Anne McGinnis Breen's Brain Tumor Blog

Anne McGinnis Breen's Brain Tumor Blog: Genetic links to meningioma

2012-02-11T03:35:00.000-08:00

Anne McGinnis Breen's Brain Tumor Blog: Genetic links to meningioma

MY dear Meningimates,

I'm sharing links to information I wanted to find for my own health and future wellness for me, my siblings and especially my three kids and grandson. I hope I can also help educate you and perhaps we can alert more of our doctors too.

I'm hoping these long reports below are not too much information for some at the time of medical treatment crisis. I really do not want to overwhelm anyone about potential genetic risks for our family members either.

Surfing around I found these four inherited diseases related to meningioma development. You can take these reports to your own medical team and share them with your family members if you want, or just save them for when you or your loved ones have time to read more.

From your own emails, it doesn't seem to me that very many of our doctors share this type of genetic neurofibromatosis background info with you people who might also like to keep your eyes open for symptoms in your own relatives, At the DIA conference last fall I met several young parents of little kids with neurofibromatosis NF2 and they didn't seem to know it strikes older adults like us too That apparent medical knowledge gap in the parents made me even more curious about genetic links to meningioma.

http://insciences.org/article.php?article_id=10259

This European article above says relatives of people with meningiomas are three times more likely to develop this disease than other people, Lifestyle choices and specific environmental factors besides prior radiation exposure seem to add to some individuals inherited disease risk.

I'd like to propose my own theory that prior exposure to radiation or cancer in either parent or grandparent before they have their own children might contribute to an inherited genetic cancer susceptability from DNA mutations caused by a parent's exposure, especially of nurses and ER staff during pregnancy. These genetic mutations could increase total cummulative lifetime radiation risk and explain the cancer mutations in my 3 siblings. However, neither of my parents and none of my own 5 siblings have had meningioma, but all of my sisters and my Mom have had uterine fibroids.

So far only a small proportion of meningiomas are directly linked to inherited genetic diseases and some longterm late effects of previous ionizing medical radiation exposure. These four inherited diseases can cause a wide range of low grade abnormal cell growth masses, benign lumps and bumps, cysts, adenomas, lesions, neoplasms and solid tumors or meningiomas before they progress to cancer. The first one is von Rechlinghausen disease or Neurofibromatosis Type One and Two, NF1 and NF2, and three other genetic mutations linked to meningiomas are called Cowden syndrome, Werner syndrome and Gorlin syndrome.

I added four reliable medical links below to read more about the potential disease progression of each one..
Studying about our genetic history is like studying our family history and the extra reading is good cognitive therapy too. lol

http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm

http://www.cancer.net/patient/Cancer+Types/Cowden+Syndrome

http://emedicine.medscape.com/article/1114125-clinical#a0217

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002423/

GBYAY Anne McGinnis Breen

Genetic links to meningioma

2012-02-11T02:45:00.000-08:00

MY dear Meningimates,

I'm sharing links to information I wanted to find for my own health and future wellness for me, my siblings and especially my three kids and grandson. I hope I can also help educate you and perhaps we can alert more of our doctors too.

I'm hoping these long reports below are not too much information for some at a time of medical treatment crisis. I really do not want to overwhelm anyone with potential genetic risks for our family members either.

Surfing around I found four inherited diseases related to meningioma development. You can take these reports to your own medical team and share them with your family members if you want, or just save them for when you or your loved ones have time to read.

From your own emails, it doesn't seem to me that many of our doctors share this type of genetic neurofibromatosis background info with you people who might also like to keep your eyes open for symptoms in your own relatives, At the Wash DC DIA conference last fall I met several young parents of little kids with neurofibromatosis NF2 and they didn't seem to know it strikes older adults like us too. That apparent medical knowledge gap in the parents made me even more curious about genetic links to meningioma.

http://insciences.org/article.php?article_id=10259

This European article above says relatives of people with meningiomas are three times more likely to develop this disease than other people, Lifestyle choices and specific environmental factors besides prior radiation seem to add to some individuals inherited disease risk.

I'd like to propose my own theory that prior exposure to radiation or cancer in either parent or grandparent before they have their own children might contribute to inherited genetic cancer susceptability from DNA mutations in sperm or egg. These genetic mutations could increase total cummulative lifetime radiation risk and help explain DNA cancer mutations in my 3 siblings who have cancer now. However, neither of my parents and none of my own 5 siblings have had meningioma, but all of my sisters and my Mom have had uterine fibroids and gall bladder removal.

So far only a small proportion of meningiomas are directly linked to inherited genetic diseases and some to late longterm effects of previous ionizing radiation exposure. These four inherited diseases can cause a wide range of low grade abnormal cell growth masses, benign lumps and bumps, cysts, adenomas, lesions, neoplasms and solid tumors like meningiomas before they progress to cancer.

The first one is von Rechlinghausen disease or Neurofibromatosis Type One and Two, NF1 and NF2, and three other known genetic mutations that can cause meningiomas are called Cowden syndrome, Werner syndrome and Gorlin syndrome.

I added four reliable medical links below to read more about the potential disease progression of each one..
Studying about our genetic history is like studying our family history and the extra reading is good cognitive therapy too. lol

http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm

http://www.cancer.net/patient/Cancer+Types/Cowden+Syndrome

http://emedicine.medscape.com/article/1114125-clinical#a0217

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002423/

GBYAY Anne McGinnis Breen

My House Rep Gabrielle Giffords is recovering quite well from her Aphasia

2012-01-06T02:50:00.000-08:00

This weekend January 8th our Tucson community is going to be commemorating the tragic mulitple shootings and six deaths, including a federal judge, last year outside my local Safeway grocery store. Memorial events and special activities are scheduled all over town with more than a dozen peaceful community events and prayer services as you can read about here.

http://www.kvoa.com/full-coverage/triumph-over-tragedy/

FYI Please find two articles about Gabby's aphasia condition in the MED Page Neurology Gadget in the left side column of my blog. And or check out the Brain Injury Association website for facts about mild and traumatic brain injury. I wish they would mention the correct medical word for her condition so my dear meningimates with word finding issues would know what is really happening to them and would not become as emotionally frustrated as I was when it temporarily happened to me.

Gabby was recently interviewed on the ABC Evening News by Diane Sawyer and her physical recovery has been remarkable thanks to the extended "state of the art" brain rehabilitation,speech and cognitive therapy she has been receiving daily for the past full year. Obviously Federal health insurance is much better than what most ordinary Americans receive at their job or have to pay for themselves thanks to our tax dollars. (Jan 26th Now she has resigned) Even if she resigns or loses her job in Congress, she will not lose her federal health insurance plan benefits since she has been on the job five years. The Federal insurance plan for US government employees and elected officials is the best in the land and its socialism for powerful and influential politicans. None of them seem to object to the high quality socialized national health care that we provide for each of them. I'm just saying, wouldn't it be more democratic if they would provide the rest of us ordinary 99% with the same level of quality national socialized medical care that 2 million of them get?

Some of us living with a brain injury like mild aphasia, after one or two craniotomies or brain radiation and chemo may struggle very hard home alone to get cognitively back up to speed and go back to work. IF we can walk and talk, we may not be told about treatment for mild aphasia or balance problems or how to apply for or be able to afford a few weeks or months of physical therapy and professional speech therapy with word finding problems, facial retraining exercises, organizational and social skills retraining with a neuropyschologist, occupational therapy and the vestibular balance retraining she is getting and still benefiting from every day. We may need some professional counseling support to recover to the best of our ability and may need new social coping skills to avoid depression or new bad behavior habits after major brain injury or surgery, if we can afford it, because many of us do not have medical health insurance that covers any cognitive and behavioral rehabilitation. She can bravely sing a string of words from a song, yet she has great difficulty expressing her thoughts in her own words and forming complete sentences of more than a few words.

Back to my main social issue, "Triumph over Tragedy in Tucson" is this weekend. The ongoing tragedy is that the great state of Arizona has made more massive budget cuts to mental health care services for brain injured people, troubled youth and adults in Arizona despite this recent tragedy. The young shooter bought his gun and tons of ammunition at a Walmart. He was rejected by the US Army and ejected from the Pima County Community College campus and told to seek mental health services,that information should have been used to add his name to a no buy list wherever weapons are sold, in his condition that was on record, he never should been allowed to buy any weapons. And another major event scheduled in Tucson this weekend is the Pima County Fairground GUN SHOW. How sad and ironic that Pima County officials allowed this gun show to come here on this important symbolic anniversary weekend and some of my neighbors will be buying more new guns right here in her/my Congressional House District this weekend. No funds for mental health needs, or gun sale controls, but we will spend to have a special addition election for someone to take over her spot before the general election in November. What a waste of state funds since her district borders have been changed and gerrymandered out of Pima County to eliminate the NW Tucson area of two small growing towns. My new Rep will be serving Oro Valley, Marana and all the rural areas, Navajo and Apache lands all the way to the northern AZ state border along the eastern half of the state.

Perhaps I will call the gun show for more detailed information and to express my dismay since people are not allowed to bring their pet dogs to the Pima County Fairgrounds, and of course, there is no smoking, and here in rural Republican run Arizona they can bring their own guns almost anywhere they want, even into local bars. Now the strong AZ Gun NRA fans have proposed an AZ state law to allow concealed weapons on our three AZ University campuses. Are they crazy? Jan 7-8 AZ Tucson, Pima County Fairgrounds, Crossroads of the West 801-544-9125

Drugs for unmet needs may soon get faster FDA approval

2011-11-17T05:46:00.000-08:00

http://www.bloomberg.com/news/2011-11-16/drugs-for-unmet-needs-may-get-faster-approval-under-senate-plan.html

A new FDA proposal with drug companies might help more people with meningioma and cancer get Mifeprex like I do in a FDA investigational clinical trial.

This proposal might prevent deaths like the tragic story of the real Norma Rae, Crystal Lee Sutton, a union activist who died after a two year struggle with meningioma. There is still no standard chemo for meningioma so insurance companies do not have to pay for any drug therapy for this disease. They delayed paying for any other type of brain cancer therapy for two months. She had already had brain surgery two years in a row which probably used up some type of annual insurance cap on her treatment costs.
http://crooksandliars.com/susie-madrak/norma-rae-dead-68-after-two-year-stru

Mifepristone for Meningioma 2004 and 2006 research reports

2011-11-08T21:13:00.000-08:00

MY dear Meningimates,

My main goal is to replace fear with confidence and enough medical knowledge to help the doctors of my dear meningimates, male and female, who want to try a safe effective drug therapy to possibly block low grade meningioma regrowth that has no risks of permanent brain injury or blood clots. I also want women to know it works safely to control and shrink uterine fibroids 50 % without the risks of major abdominal surgery.

This detailed longterm use research report of Mifepristone for two female meningioma patients below came out in 2004 and I have a similarly located left sphenoid recurrent meningioma tumor affecting my vision in one eye and in 2004 I had already had two craniotomies in 1986 and 2000 and I did not want the recommended six weeks of five days a week standard brain IMRT radiation, as if my non malignant low grade 2 brain tumor condition was real brain cancer.

http://www.nature.com/eye/journal/v18/n9/full/6701370a.html

My tumor had been stable for three years before in a similar US 1992 NCI SWOG 9005 trial of mifepristone for meningioma by Doctor Steven Grunberg I was in from 1996-1999 and during that time I had no new tumor symptoms or bad side effects. Dr Grunberg published another clinical trial report in 2006 below that says it also helped some male meningioma patients.

So I wanted to take this drug again, just like these two ladies above . I generally felt better while I was on the drug and I already had a total hysterectomy in 1992 for fibroids so I did not see any risk to me of endometrial hyperplasia like one lady had in this report and three in the other.

I was able to start taking this drug again in Feb 2005 after a delay of one year to complete all the FDA and IRB legal paper work to get my own individual clinical drug trial of mifepristone for meningioma. And Dr Grunberg published his additional PUB MED report below in 2006.

• Long-term administration of mifepristone (RU486): clinical tolerance ...
www.ncbi.nlm.nih.gov/pubmed/17162554
by SM Grunberg - 2006 - Cited by 47 - Related articles
2006 Dec;24(8):727-33. ... Grunberg SM, Weiss MH, Russell CA, Spitz IM, Ahmadi J, Sadun A, Sitruk-Ware R. Division of Hematology/Oncology, University of Vermont College of Medicine, Burlington, Vermont, USA. steven.grunberg@uvm.edu ...

Please feel free to take these reports to your own doctor. One of our m readers recently told me that three different doctors all told her there was an increased risk of blood clots with Mifepristone. Baloney!! None of these patients had any problem with blood clots and neither do I after taking this safe medication for six years the second time.

I have recently read it may be true of YAZ or other new drugs used for birth control, but generic Mifepristone (brand name Mifeprex the Early Option Pill) is not the same as these newer drugs. I believe all the scary possible side effects we hear about when good old Mifepistone is used as the first part of an early medical abortion are actually from the other drug usually/sometimes? given during a regular first trimester medical abortion. Certainly not when low dose Mifepristone alone is used for daily or emergency birth control. The small daily dose I take does not cause any bleeding problems, in fact I have read in the research below where very low daily dose Mifepristone fights anemia and stops uterine blood loss completely and safely when it is used to treat fibroids.

• Rochester Study Rolls Out RU-486 to Treat Uterine Fibroids - News ...
www.urmc.rochester.edu › NewsroomCached - Similar
Rochester Study Rolls Out RU-486 to Treat Uterine Fibroids. December 06, 2006. Low doses of the drug mifepristone shrink uterine fibroid tumors and greatly ...
• Pathology Study Tracks Uterine Changes with Mifepristone - News ...
www.urmc.rochester.edu › NewsroomCached
Mar 7, 2011 – URMC Research Confirms Possible Use of Drug for Painful ...
Show more results from rochester.edu
•
• Pathology study tracks uterine changes with mifepristone
www.sciencedaily.com/releases/2011/03/110307124927.htmCached
Mar 7, 2011 – Rochester Study Rolls Out RU-486 To Treat Uterine Fibroids (Dec. 7, 2006) — Low doses of the drug mifepristone shrink uterine fibroid tumors ...
These extra pathology study reports showed no pre cancerous changes to the uterus with low dose Mifepristone use.

I think her three doctors are all wrong about blood clots too with old generic Mifepristone because of this FDA report I googled last week.

The CBS Evening News (10/27, story 9, 0:30, Pelley) reported, "The FDA is raising serious questions tonight about the safety of a popular birth control pill. It says the pill, called Yaz [drospirenone and ethinyl estradiol], puts women at a 75% greater risk of blood clots than older forms of birth control."
The AP (10/28) reports the FDA says "several new birth control drugs, including the Bayer pill Yaz, appear to increase the risk of dangerous blood clots more than older medications." Study results released by the FDA "reviewed the medical history of more than 800,000 American women taking different forms of birth control between 2001 and 2007."
In a separate story, the AP (10/28) reports the FDA also saw "higher complications in women using ethinyl estradiol and norelgestromin [Ortho Evra] patch from Johnson & Johnson and ethinyl estradiol and etonogestrel [Nuvaring] vaginal ring from Merck & Co. Inc." Recent studies show "differing conclusions on the risks of newer birth control pills." For example, "two studies published in 2007...did not find any difference in blood clotting between the two comparable groups."
MedPage Today (10/28, Gever) also reports, "Compared with hormonal contraceptives with relatively low estrogen doses, norelgestromin/ethinyl estradiol transdermal patch and etonogestrel/estradiol vaginal ring products were both associated with increased risk for venous thromboembolism (VTE), as were birth control pills containing drospirenone," according to the retrospective database analysis.
HealthDay (10/28) reports, "For now, the FDA is not advising that most women switch to another form of contraception." The FDA said, "If your birth control pill contains drospirenone, do not stop taking it without first talking to your health care professional." But "contact your health care professional immediately if you develop any symptoms of blood clots."
Bloomberg News (10/28, Bettelheim, Kresge) reports on study findings in Denmark published in the British Medical Journal this week, which found that "users of oral contraceptives with desogestrel, gestodene, or drospirenone were at least at twice the risk of venous thromboembolism compared with users of oral contraceptives with levonorgestrel."

We live in a free country with basic human rights for all people, therefore I want the US Congress to get out and stay out of private doctor/patient relationships. I want Congress to stop passing laws dictating to our well qualified medical doctors what FDA approved safe old generic drug they can not prescribe for their own patients to treat and improve their quality of life for rare chronic conditions.

Please ask them to stop procrastinating, ask them to read the Amendment to Medicare Part D for Drug Parity in HR 1055, then co sponsor it to get a bill in the Senate and pass HR 1055 in both houses in 2011.

And I hope you will read about HR 1055 and use my congressional zip code widget in the left sidebar to find your members of congress and tell them whether or not you want to have the freedom and right to the safest medical care from your qualified and well informed doctors without political and legal interference by others in your personal health care decisions.

GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)

Please scroll all the way down to my first two blog entries for my list of 28 questions to ask your medical team about brain tumor treatments plus my personal meningioma alternative drug therapy RU486 Mifepristone
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!

More Health Care, not Warfare, more basic human needs. not corporate greed

2011-10-30T03:20:00.000-07:00

This month of October 2011 marks the eleventh year of our country’s longest war in Afghanistan and the onset of the 2012 US federal budget, which provides unlimited funds for war and corporate greed, while withholding funds for basic human needs. On October 6th, a protest assembled at Freedom Plaza in Washington, D.C. with the goal of “nonviolently resisting the corporate machine by occupying Freedom Plaza to demand that America's resources be invested in human needs and environmental protection instead of war and exploitation.”
I agree with the Occupy Wall Street and Occupy Washington DC movements to promote peace, not war, equality not discrimination, sustainable stewardship of our planet for all humankind, with a preference for the poor, the sick and the marginalized.
GYBAY Anne McGinnis Breen

January 21,2011 I'm planning ahead to see you in Tampa again!

2011-10-30T02:59:00.000-07:00

Florida Brain Tumor Association & Moffitt Cancer Center, Tampa,Fl will be hosting
" Together in Hope". A brain tumor seminar for brain tumor survivors,families & health care professionals. Sat., Jan 21, 2012 . More information, go to: www.fbta.info, register on line. This event is designed for plenty of time to ask questions, consult room appointments will be available. Breakfast,lunch,refresh break included.
Florida Brain Tumor Association
www.fbta.info
At this bt conference I hope to see all my old bt friends and make some new ones GBYAY Anne Breen
PS Please read my dear friend Sheryl Shetsky's Top 10 point plan at fbta website

Mifepristone blocks 10 types of cancer cells

2011-08-30T18:41:00.000-07:00

Read the new research at http://www.biomedcentral.com/1471-2407/11/207

This is a political hot potato! I have been successfully taking this drug since Feb 2005 to block a recurrent meningioma primary brain tumor. It has been in remission for six years now. Thanks to FDA and IRB approval I have my own IND number and investigational clinical trial. I need your help to change our medical health care delivery system so that qualified medical doctors, not politicans from the religious right, can determine our US modern medical treatments and drug choices, not right wing investors and insurance companies.
Its the money power of the religious right in our US political system that prohibited the use of this life saving drug by cancer patients and denied our qualified medical oncology doctors in the US permission to prescribe the drug. Some people strongly object to one of its other uses as "the morning after pill" and they want to make it illegal, even though it has many other livesaving uses in medical health care like treating uterine fibroid patients too. Our health care MEDICARE/MEDICAID system could save tons of money if millions of women could take this drug to treat and shrink their fibroids instead of having a hysterectomy.
GBYAY Anne McGinnis Breen

Meningioma webinar info and patient questions

2011-04-30T03:19:00.000-07:00

My dear Meningimates,
(My personal affectionate term for us Meningioma survivors and our loved ones) This is the NBTF followup patient question section and the Meningioma webinar if you missed it.

http://my.braintumorcommunity.org/forums/Topic4463517-4610-1.aspx?cons_id=&ts=1304025413&signature=9eecdd387196dc681b98acd3fabaff6f

Great information for those whose lives have been affected by meningioma. You will find answers to some questions for which it is hard to find straight forward answers. There are also links to research articles
in response to some of the questions.

Thank you NBTS for posting this on their website and to all who submitted such good questions for the discussion.

And my special thanks to Cindi Rixey Scott who posted this on another braintrust m list GBYAY Anne

Good information about new surgeries for meningioma

2011-04-29T23:14:00.000-07:00

Except that new meningiomas are now being diagnosed in 34% to 37% of all new primary brain tumors, not 20% as this website says.

http://www.skullbaseinstitute.com/meningioma/

Meningioma Talk - KAREN CATLIN RIP

2011-04-13T23:17:00.000-07:00

Meningioma Talk - KAREN CATLIN RIP

My dear meningioma friend Karen Catlin RIP died April 9, 2011

2011-04-13T09:55:00.000-07:00

Karen Catlin, one of our formerly most active online participants since the beginning of Alan's "Meningioma Talk" online groups shared her love, her humor, her knowledge of medical things and her gentle touch and gave us her time and talent for many years. Her words were a great comfort to many of us in times of medical crisis and ongoing recovery.

I just got the call from a longterm friend of hers on Saturday ... I visited her in early February after she missed the January Florida Bt conference. She had gall bladder surgery in February which didn't eliminate her pain. Afterwards they discovered something else on her chest scans and she had major lung surgery last week. It was stage 4 lung cancer and she was not able to recover afterwards. she died after two days in hospice on Saturday.

Our dear sweet meningimate Karen Catlin, 53 from Tampa Florida will be sorely missed by many of our regular online m readers and those who met her in Florida and her many dear friends Fred, Jesse and Alan. I am very sad, my words are inadequate. Karen was my precious roommate every weekend for the past ten Florida Bt conferences since my second brain surgery. She always cheered me up, lightened my load and helped me recharge my own batteries, she was energizing, generous and caring of others, she understood their suffering. She personally helped care for our meningimate Rick Fels, Fred's son for a long time. She will be greatly missed by her own family, her husband Steve, her son Daniel and many more relatives and good friends. She was a great woman and good friend in deeds. When I get more info about their plans for her memorial service on Saturday, April 16th at 2 pm at the Hillside (or Hillsborough?) Community Baptist Church on Cortez Blvd in Brooksville, Florida I will let you know.
GBYAYours Anne Breen

Please help me and others get this HR 1055 bill for MEDICARE drug coverage

2011-04-12T03:09:00.000-07:00

Thornberry Introduces Bipartisan Bill To Let Patients Get the Medications They Need

I just got this announcement from NORD (National Organization for Rare Diseases). Some brain tumor patients need off label cancer drugs that have not been officially FDA approved in clinical trials as treatment for their condition. For example, this off label medical drug coverage is needed to get affordable mifepristone for meningioma treatment for myself and my dear meningimates. The cost of my mifepristone treatment has tripled in the past five years which seems very strange for an old generic drug that might help some specific type of cancer patients live longer and feel better.

I need brain tumor community advocates to help get this same bill introduced in the Senate as well by writing to their state senators.

Please read my blog post about the recent death from a meningioma brain tumor of the real "Norma Rae", not Sally Fields who played her in the famous movie by that name, since there is no standard drug treatment for this type of primary brain tumor.

Please write to your state senators, tell other brain tumor patients, doctors and other cancer organizations about this new bill HR 1055.

Washington, Mar 18, 2011
U.S. Representatives Mac Thornberry (R-TX) and Russ Carnahan (D-MO) today announced introduction of the bipartisan Part D Off-Label Prescription Parity Act. The bill, H.R. 1055, would allow Medicare Part D carriers to cover the "off-label" use of drugs prescribed to people living with chronic diseases when its use is supported by medical experts.
Currently, many Medicare consumers with serious and sometimes life-threatening conditions are unable to access safe and effective medications under Medicare Part D. Only Medicare Part B and Part D medications used to treat cancer, but not other medical conditions, are eligible for coverage.
“Doctors and patients should be able to choose the safest and most effective medications for their treatments,” said Rep. Thornberry. “Right now, the requirements for coverage of the off-label use of a drug are burdensome and often result in Medicare patients not being able to get the drug coverage they need. Our bill helps fix that problem,” continued Thornberry.
The bill would give Part D plans the same flexibility allowed under other parts of the Medicare program and in the commercial insurance market.
“When we talk about setting aside our differences to solve problems, this is exactly what we mean,” said Rep. Carnahan. “This common-sense bipartisan legislation will get life-saving medicines to those who need them.”
Off-label prescribing is widespread in the medical community as an essential means of providing patients with optimal medical care. Under Medicare Part B, CMS allows carriers to consider “the major drug compendia, authoritative medical literature and/or accepted standards of medical practice” in determining whether an off-label use is medically accepted. In 2008, through the Medicare Improvements for Patients and Providers Act (MIPPA), Congress required CMS to apply the Part B standard to Part D cancer drugs used off-label.
“The Part D Off-Label Prescription Parity Act takes a balanced approach to keeping patients safe from improper prescribing while allowing access to the most up-to-date treatments available, “ said Joe Baker, President of the Medicare Rights Center. “Doctors routinely prescribe medications for uses other than those on the FDA label, according to their professional judgment and evidence in the medical literature. We are grateful Congressmen Thornberry and Carnahan have re-introduced this important bill,” he continued.
The bill is also supported by the National Multiple Sclerosis Society, the Medicare Access for Patients-Rx (MAPRx), as well as:
The AIDS Institute
The ALS Association
The Alzheimer’s Association
American Academy of Neurology
American Autoimmune Related Diseases Association
American Society of Consultant Pharmacists
Arthritis Foundation
Center for Medicare Advocacy
Easter Seals
Hemophilia Federation of America
The Lupus Foundation of America
Men’s Health Network
Mental Health America
National Alliance on Mental Illness
National Council for Community Behavioral Healthcare
National Grange of the Order of Patrons of Husbandry
National Health Council
National Spinal Cord Injury Association
National Organization for Rare Disorders (NORD)
RetireSafe
United Spinal Association

# # #
Additional reading about Medicare news
http://www.medpagetoday.com/PublicHealthPolicy/Medicare/

GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)

Please get independent second opinons before any treatment

2011-03-23T06:39:00.000-07:00

Please check out Al Musellas bt website found at
http://www.virtual.trials.com/

His list of brain tumor centers of excellence is a blue hyperlink at the bottom of the opening page,
Some of them give free second opinions on MRI scans, some of them want to see the bt patient in person.
http://virtualtrials.com/btcenters.cfm

All newly diagnosed brain tumor patients should at least get a second opinion from a good brain tumor center before any initial treatment and before any follow up plan and always ask for annual MRI scan follow up either before or after any additional treatment plan.
It also makes good sense to get independent second opinions on pathology reports from neuropathology experts before additional treatment.

To be included on Al Musellas list, the brain tumor center must have treated at least 50 brain tumor patients in the past year.
I recommend finding a young neurosurgeon who has done at least 50 a year with a skilled medical team at a neurosurgery unit with a special NICU.
If its elective surgery because you just want it out, please be sure your insurance will pay for all the extra bills like the anesthesiologist.

Al's btc list is not yet complete. If you know of a brain tumor center that is not on his list yet, have one of your doctors contact Al Musella.
Centers marked with a red star (*) offer bt patients a free scan review which means they are willing to have you contact them.
They have you send your scans by Federal Express or on computer discs, and will let you know what treatment options may be available.

When you contact them, tell them that you were referred by The Musella
Foundation - and ask for a free scan review.
If you want your MRI scans back please include a pre-paid return mailer for them and a note that you want them returned.
When you send the MRi scans, include a page with your name, contact information, your recent medical history and a copy of your surgical pathology report if you have one...
Click on the bt center name to get the contact information.
Centers are listed in order of State, then City and some are in other countries.
Some bt centers may be listed twice if some doctors do, and others do not offer free MRI scan reviews.
Click on the bt center to get the details on which doctor at that bt center offers the free MRI scan reviews.

Triangulation, getting second or third opinions helps you get enough information to make an informed treatment decision for your specific case.
Attending a regional brain tumor conference is also a great way to get educated about brain tumors and the various treatment options and meet a wonderful bunch of bt patients, parents and caregivers who know what it is like to live with a brain tumor in the family.

Please send for the basic primers and brain tumor handbooks and brochures from the two major brain tumor organizations, the ABTA.org in Chicago and NBTS in San Francisco and Boston for more reading material to give to others who care about you.
The BSF in Boston also has good brochures about meningioma by Nancy Conn Levin and Lori Levy, both meningioma survivors.

GBYAY Anne Breen, an experienced meningioma patient...25 years next October, my medical history bio below

DX and first orbital zygomatic approach craniotomy, October 1986, Tucson,
Arizona
Lower left temporal lobe tumor, near medial sphenoid ridge/wing,
Pathology benign fibrous meningioma grade 2, now called atypical bundles of long spindle cells,
Large 5 cm in diameter solid oval tumor mass behind left eye below the left optic nerve, age 39,
Discovered after several fainting spells like TIAs and terrible sinus headaches for 6 months
Driving and even skiing slowly again in three months, off all meds in six
months, full recovery in 6 months
Employed fulltime work one year post op as Assistant to Museum Director and Volunteer Coordinator and continued to raise our three kids

Recurrence documented by MRI in 1992 six months after a total hysterectomy and HRT,and six years after annual clean MRI scans since first surgery in 1986
I switched jobs to academic preschool teacher position and continued to work part time until 1999
In 1992 I declined tumr board recommended second surgery and follow-up linac accelerator brain radiation and found a SWOG oncologist willing to participate in the 1992 clinical trial NCI SWOG 9005 Phase III Mifepristone for Meningioma
1995-1999 three years of the real drug Mifeprex with no change in tumor size, it was stable on MRI for three years.
I figured, it wasn't bothering me, so why bother it as long as I had no new symptoms and it was still much smaller than the first occurence
Eight years later, in 2000 I finally decided to have a second orbital zygomatic approach craniotomy to "safely debulk" the tumor again because of new puffiness visible around my left eye and bony involvement documented on a October 1999 CT scan,
In January 2000 Dr. Robert Spetzler and his fine team at Barrow Neurological Institute, St. Joseph's Hospital, Phoenix, Arizona
Removed most of my 2cm by 3 cm long thin recurrence along the sphenoid bone and optic canal bone
I had the same question mark shaped incision from above my eye up in the hairline to my left ear, same bone flap replaced with only a 1 inch strip of hair shaved and I was home after 3 days and 2 nights in the hospital, no other drugs needed except 10 days of percodet for jaw pain.
Full recovery of all neurological function and return to normal activities and regularly walking two miles a day in two months,
I was driving again and at the LA BT conference in the spring of 2000
Some small remainder of residual tumor, first thought to be scar tissue became documented recurrence in 2004, I had further gradual loss and blurring of vision in left eye in 2004 so I applied to the FDA Compassionate Care program for Mifepristone
WAWA = Watching and waiting again, not whining, lol while I still actively postpone recommended IMRT now age 63,
Every year the new brain radiation machines get more accurate if I ever decide to have more treatment.
I am back on daily Mifepristone 200mg since Feb 2005 and my condition is stable and so am I.
KOKO= Keep on Keepin on!!!!!!

GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)

Please scroll all the way down to my first two blog entries for my list of 28 questions to ask your medical team about brain tumor treatments plus my personal meningioma alternative drug therapy Mifeprex RU486 Mifepristone and my blog comments about the obsolete 1990s EPA radiation risk calculations for women and children which are twice as high as average reference man are found at http://gbyay.blogspot.com

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!

Nursing training teaching tool on meningiomas

2010-10-17T22:59:00.000-07:00

This website is for nursing students to learn about meningiomas especially since 30%of the general population may have one, yet only a small percentage will ever be discovered during their lifetime or have any serious symptoms. It includes references to medical research articles about meningiomas. Today many are found early while they are still very small because of the enormous increase in routine medical MRI and CAT scans in the past two decades.

http://www.nursingcenter.com/prodev/ce_article.asp?tid=865149

GBYAY Anne McGinnis Breen

Women of the World want Peace on Earth

2010-08-09T01:29:00.000-07:00

The United Nations goals of this 1325 UN Resolution and new start up website ought to be addressed by all men and women. I want to be part of the Women's Peace Movement around the World and promote conflict resolution without military force. It all starts at home in the family or lack therof in early education and family support. Poverty and discrimination create tensions that must be diplomatically defused. Everyone's lives are interdependent and we all need social support and ongoing educational opportunites. It takes a village to raise a child, and women need to be heard and more actively involved in the actual decision making process for their own family, their own community and their own country.

Please read the history of women of peace

http://www.ja1325.org/main/AWP.htm
GBYAY Anne

ABTA.org about meningiomas

2010-05-28T15:58:00.000-07:00

http://www.abta.org/tumor_treatement/129-2

This 2009 good initial diagnosis article explains some genetic mutations of meningiomas without mentioning that previous ionizing radiation exposure is a known contributing factor to meningioma growth.(just google the term (radiation induced meningioma for proof) Or the established medical fact that 70-80% of low grade meningiomas and some other low grade brain tumors have high progesterone receptor levels. Or that the use of this safe anti progesterone agent Mifepristone has the potential to block the growth of benign meningiomas with high progesterone receptor levels, especially if given before radiation therapy, if hormone receptor level testing is done on the tumor tissue after surgery or biopsy and included in the pathology report. Sadly, you may still have to ask for this hormone receptor testing for brain tumors, I did in 2000. So far, hormone therapy is only popular in more advanced medical research done in breast cancer. (Makes me wonder if they care more about our boobs than our brains LOL) I sure wish I could pay for Phase 3 clinical trial testing needed to get this safe drug FDA approved for standard initial and/or recurrent meningioma treatment. Then it would no longer be an off label use in the US. I sure wish our Congress and the Executive branch would respect the FDA and NIH government research done at the University of Rochester Hospital in NY State 2006 that has proven mifepristone is safe and effective for all women for longterm low dose use for uterine fibroid tumors, instead continuing to overrule FDA results. Years ago one excellent former Director of the FDA Womens Health Department, Susan Woods resigned in protest over this political power struggle, yet it still continues.
GBYAY Anne McGinnis Breen

A sample patient letter reply I wrote that was blocked

2010-05-19T11:30:00.000-07:00

Welcome to our meningioma online support group,
Especially new readers, like Karen and Bernadine(your emails included below)

Sorry I didn’t see any other email from either of you or from anyone on this entire site for several weeks, until I sent in the Florida January conference notice yesterday. So sorry you have to be here, but so glad you came to ask us any questions you may have. I really like to share my own opinions, and I don't expect everyone else to agree with me. I am not a doctor or a nurse, just another meningioma patient who has been around online a long time and read tons of emails about what their doctors said or didn't say to my dear meningimates, especially about a small tumor less than 2 cm.

Bernadine, honey,there are almost as many medical opinions about our brain tumors and how to treat them, as there are surgeons, radiologists and neurology doctors too LOL &;>)
Especially if we happen to remind them of their first wife or their former mother-in law! LOL
Always ask them what if it was your own son or daughter what would you do?
I had a complete physical by a doctor of internal medicine three weeks before discovering I had a solid mass 5 cm lower wing temporal lobe tumor at age 39. He wrote I was a mildly overweight middle aged lady and he could not find anything wrong with me....I think I reminded him of his first wife LOL

IA few of our meningimates (my personal affectionate term for all of us and our loved ones) have waited ten years before having any treatment because it was small, less than 1 cm , wasn't growing after six months or a year and they didn't have any major visible symptom. The risks of major side effects from both standard treatments can be worse than the original tumor symptoms sometimes depending on your age, your general health and your other medical conditions etc
IF they are like multiple warts or small like a tiny cyst, less than 1 cm and was/were found incidentally on MRI while checking for something else, you may want to monitor your condition for a while. My headeaches were not the same increasing growing pain cycle that lasts for hours like the migraine headaches my sister always had, I had no aura, no bad reaction to bright light like she had, I had fast sharp stabbing sinus pain and sudden fainting spells, several moments of profound muscle weakness and temporary complete loss of vision. And symptoms and treatment options do vary depending on the tumor size and its location in the brain

I suggest you each get another independent medical opinion from another excellent specialist in brain tumor removal, not simply another very nice local neurosurgeon who mostly does back or spine surgery at your local community hospital, not another neurologist either.
Do you have copies of your own MRI films to send to another brain tumor center of excellence for a free consultation?
The website www.virtualtrials.com has a list of these places marked with a red star where you can send your medical records to an experienced bt doctor for a free consultation and second or third opinion.

DEAR Karen. IMHO MRIS are sort of a doctor's guessing game they get it right and win about 80% of the time guessing what type of tumor it is by its location and appearance on MRI. Have it checked again in the first six months or year or two to see if it is growing or changing at all, if it doesn't change much at all, or only a few mm it is probably a low grade primary brain tumor like a meningioma or acoustic neuroma or vestibular shwannoma, but there are over 120 different primary brain tumor types.
You are right a needle biopsy or brain surgery is the only way to know the exact type and grade of tumor for sure documented in a pathology report, and "finally, although your Ehlers-Danlos Syndrome (EDS) can be more than enough to cope with, however it does not protect patients from anything else anyone can get. Since many Rheumatologists also practice internal medicine, EDS patients would be well advised to consider finding an internist as a primary car physician who is also a Rheumatologist. This way, there will be perfect integration of general and specialty care" quote I have taken from an EDS website.

So, at some level the Rheumatologist has a lot to offer a patient like you with Ehlers-Danlos Syndrome including proper nutrition or alternative ways to exercise and do other things.

I think we ought to get second opinions on our pathology reports from a skilled neuropathologist, not just a local general pathologist who may not have seen all the different primary brain tumor types under a microscope before... and by the way, most low grade meningiomas look alot like uterine fibroids to pathologists, and unless the slide is marked abdomen or skull they might not be able to tell the difference with microscopic visual comparison alone.

DEAR Bernadine,
I went back to full time work a year after my first surgery back in 1986 If you have multiple brain tumors like meningiomas, you might need to read more yourself and google an inherited condition called Neurofibromatosis 1 and 2 called NF1 or NF2 Did your doctor mention anything about that? The NINDS US government website is a good resource of reliable medical information on Neurofibromatosis 1and 2.

And you can ask for vestibular therapy exercises for your dizziness and balance problems right now, you don't have to wait for it to get worse hon I think that is pretty disgusting, if they do not offer you immediate rehab and information about local places to get physical therapy for balance retraining exercises that can help you improve your balance in a few weeks, if you do the daily exercises they teach you regularly every single day for a month at many outpatient physical rehabilitation centers.

Some good doctors are very cautious, some good doctors are very aggressive, both kinds of doctors might be good and/or the right one at one time or another for each one of us...We are each so unique, all different ages, some with diabetes or some another health condition which may complicate or change the treatment plan for anyone of us. Did you have any seizures before, is that what the neurontin is for hon? Some tranqulizers and/or seizure control meds do overlap with mood regulating drugs be sure to check the side effects or interactions of all your meds at rxlist.com.

Surgery is the most frequent and generally the best way to find out what type and what grade of tumor it is first, but some people are just not good candidates for surgery or radiation.
and doing a needle biospy is almost just like surgery anyway, they still have to drill a hole in your head, so, some docs say they might as well only drill that hole once so you only take the surgery risk once... ,

Move onward and forward with hope in your heart, KOKO Keep on keepin on !!! even if you have to take baby steps at first, regular walking exercise is absolutely the very best thing we can do for our brains at any age, even if we have to start over again with a walker, we can improve if we work hard enough . I really ought to being doing it more daily myself. I used to feel better when I did walk briskly even three days a week, and drink more water, and eat well washed apples, grapes and especially bananas LOL
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
"Hope has two daughters--anger and courage: anger at the way things are and the courage to work to make things other than they are." -- Saint Augustine

Courage in women is often mistaken for insanity.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!

-----Original Message-----
From:
To: meningioma@listproc.hcf.jhu.edu
Sent: Tue, 30 Dec 2008 5:16 pm
Subject: [meningioma] Re: b enign meningioma
dearkaren,Ihave beendealing withbenign meningiomas for 5 years now. I am not happy with John Hopkins. I still am dizzy,imbalance,andheadaches,I takeNeurontindaily.Ido doctor with myentandear hospital too.Believe it or not I still teach. y husband has had 2 open heart surgeries.I get so discussed sometimes because my neurologist says he's not sure if the meningiomas are causing these symptoms.He's blaming the symptoms on migraines. MeantimePittsburgh Ear wanted to do surgery when I first found out.5 years ago I went deaf in my right ear .I was sent for an MRI and found 3 meningiomas.who do i believe?really discussed.
bernadine
--- On Tue, 10/16/07, Karen < >
Subject: benign meningioma
To: meningioma@listproc.hcf.jhu.edu
Date: Tuesday, October 16, 2007, 2:56 AM
After complaining of headaches and dizziness for many months, my ENT sent me for
an MRI. The radiologist said it showed a small benign meningioma. I was
referred to a neurotologist at the House Ear Clinic in Los Angeles. My hearing
and balance tests were within normal limits, but I am still symptomatic.
the doctor said that he has many patients with meningiomas that he just keeps
an eye on. After I left the appointment, I started to google!
Can a doctor tell for sure by looking at the films that a tumor is benign
without a biopsy.
I have Ehlers Danlos Syndrome which is a lack of collagen in the connective
tissues and am not sure if this plays a role in it.
Any advice is greatly appreciated.
Karen

Please keep track of your medical Cat scan tests

2010-04-28T18:06:00.000-07:00

Here is a link to a trusted webmd website warning for all patients

http://www.webmd.com/cancer/news/20100331/faq-radiation-risk-from-medical-imaging?src=RSS_PUBLIC

Norma Rae's real story ends with meningioma

2010-02-26T12:16:00.000-08:00

Dear Good People
The real Norma Rae, Crystal Lee Sutton's life ends with more insurance and treatment questions than answers, The fine print in the health care legal documents are too complex for most of us to figure out and it depends on how smart you are, who you are, or how much money you have, or your family has connections to good doctors or, what medical attorneys know to help people navigate the health care system to figure out how to get an exception to almost any exemption. The two party system of government is not protecting ordinary working people, it is protecting the wealthy investors who hide behind corporate shields so they are not personally responsible for the damage and death they cause and/or allow to happen. Senators are not working for all Americans or unemployed people who do not have a union job or employee benefits. I have heard even union workers might not get enough hours and coverage paid if they do not follow the party line.

I hope responsible investigative reporters and "truthseekers like me" will continue look for more details on her treatment plan and her insurance company.

What kind of health insurance policy did she have? I read online somewhere that it had an annual cap of $100.000 per year and she was 67 years old when she was first diagnosed. I wonder why not, or if she was actually on MEDICARE? We need more facts instead of the typical media hype for dummies that we get even from senators on both sides, because they are not our our side.
There is no approved FDA chemotherapy for malignant meningioma because the mega big corporations of the pharma industry and the NCI Adult Brain Tumor Consortium have decided not spent our tax money on research studying this usually slow growing brain tumor that strikes women teice as often as men, because it is generally considered rare and benign. But our meningiomas are twice as common as the deadly type that killed Ted Kennedy and they hasppen twice as often to women. And surviving two brain surgeries exactly a year apart is a remarkable feat for anyone, especially someone her age. I would have expected that once her doctor found out it was malignant after her first surgery she would have been treated with brain radiation therapy and chemo right away, why wait a year and why another surgery at her age? Why didn't she get radiation therapy and some chemo a year earlier, like other malignant brain tunor patients? Did she chose not to have brain radiation? Was it recommended for her case? I would like to know waht actually happened here before Democrats try to use her as a poster child for Obamacare. According to her age, she was medicare eligible for the past three years. Secondly, We do not have enough information. What was the chemo drug she was offered? Was it experimental? or not normally used or considered effective for this type of tumor? Or was it a simple coding error?

Do we know what drug she would have been given if she was on MEDICARE? Could she even get an investigational drug like I am on, if she was on MEDICARE or if she had a private policy, I doubt the drug I take was even mentioned to her by her doctors. I can't get it from my private insurance UNITED HEALTH CARE and will our government pay for it once I do get on MEDICARE? I got it for free from the NCI in the 1990's. Or will I have to stop taking it, if we can no longer afford an extra $6,000 a year for my care? And I had to wait a whole year for the paperwork while my vision got worse before I could get for myself, not just two months. IS it big mega corporation profit? bribes and/or bonuses? I wish I knew all the answers, but I want the federal government plan that retired employees like Dick Cheney has, he got such good care he has survived 5 heart attacks intact, although I thought he had some brain cells missing even when he shot that guy while out hunting, many people do not even survive one.

Yes, this is very personal for me, that's why I am such a fanatic about health care issues and education and information. Reading is fundamental to survive in the world today. I guess they will probably try to deny me approval again, but if I only have to wait two months to get it that will be better than the situation while I was on private insurance. I certainly do not have all the answers, but I can keep on asking probing questions because this is so vital to my own health and my future, because inquiring minds want to know more. I believe there is no such thing as a dumb question as long as we are polite, and some times we might need to be persistent. It is incorrect answers or silence without any answer that hurts us the most. GBYAY Anne McGinnis Breen

Journaling After Brain Injury

2010-02-26T09:55:00.000-08:00

Journal After Brain Injury
Thinking about yourself and/or your loved one after a brain injury can get emotional, writing down your thoughts can help you to cope. Here Barbara Stahura suggests some topics to get you started on coping with your new feelings.

How to Stop Worrying: Self-Help for Anxiety Relief

2010-02-24T14:20:00.000-08:00

How to Stop Worrying: Self-Help for Anxiety Relief

CT and Pet scans have risks

2010-02-24T11:18:00.000-08:00

Granted this 2009 article below is new and not officially approved yet, but based on the fact that the EPA office staff wrote back to me that its Federal Guidance and Protection Diagnostic Radiology Report (FGR 9) is thirty years old. Or at least twenty years out of date according to other scientific documentation in BEIR VII since 1990 and needs updating and revision because it does not take all the CT/PET scans fully into account. And a EPA working group with the Interagency Steering Committe on Radiation Standards (ISCORS) plans to discuss the need for reference levels and dose optimization, new dose metrics, guidelines and standards to reduce unnessessary radiation exposure due to increasing medical use. I wonder if any of it has been implemented yet?

Because this article below is so scary, please don't share it with anyone who needs an immediate diagnostic CT or PET scan to save their life unless you are sure doctors will approve a more expensive MRI scan instead. Some doctors think the MRIs show too much "tiny" detail of possible lumps that may never need to be treated in the person's lifetime. Please try to remember the balance and duality of risk vers reward. Its like flipping a coin, heads you win, tails you lose. The luck of the draw. For example, we all love to watch the Olympic winter sports, yet at the same time thousands more young people are taking extreme risks of possible physical or emotional injury while practicing their sport and hoping someday to compete to win a gold metal and the highest honors. Only a very few ever acomplish their goals without significant physical or psychological wounds as they actually risk their life for extreme sport. Everything in life has an up side and a down side, we all need to try to go with the flow up to some point beyond which we may falter or sacrifice too much of oursleves to recover our balance.

http://www.medpagetoday.com/Radiology/DiagnosticRadiology/17530

Potential indolent tumors from lifetime repeated low dose radiation exposures

2009-12-21T10:42:00.000-08:00

The need to immediately update Radiation Risk Calculations for women and children and specific organs, like the brain. Please ask the EPA to stop procrastinating.

Did you know that the risk of non cancerous complications and benign radiation induced tumors from multiple low dose radiation exposures is 50% higher for women than for men? The most commonly used standard EPA REFERENCE MAN is obsolete. After twenty to thirty year latency periods today the risks are even higher for children, not only because their growing bodies are more vulnerable, but because they hope to live 60-80 years, twice as long as any 30 year old male adult that the now obsolete 1990 REFERENCE MAN was based on starting in the early 1970s after Nixon declared WAR ON CANCER.

I am wondering if the 50% higher impact on women may explain why more than twice as many women have meningioma brain tumors than men and why the most common benign braintumor meningioma is twice as common as the more aggressive glioma brain tumors. Almost a third of middle aged women have benign fibroids which look the same as meningioma cells under a microscope. I was just reading about the thousands of radiation induced abdominal tumors from many multiple Ct scans reported in 2007. Each CT scan is equal to several hundred plain x-rays today. And this is scary and folks used to ignore me when I said the many multiple full mouth dental xrays I had fifty years ago from three different types of dentists contributed to my meningioma brain tumor, plus a decade of cordless analog home phone use before my brain tumor was discovered on the same side of my head that I hold the phone. And I wondered WHY the number of new meningioma brain tumor cases in 2004-2005 was so many more than were anticipated by the Central Brain Tumor Registry of the United States(www.CBTRUS.org) Now CBTRUS onine reports that meningiomas are 37% of all primary brain tumors, more than twice as many as the 17% more aggressive glioma brain tumors like Sen Ted Kennedy died from recently. Yet there is still no effective chemotherapy agent FDA approved specifically for classic benign, atypical, recurrent or malignant meningiomas.

Did you hear about the reduction in recommended mammograms from the Prevention Task Force? Have you seen the new FDA warning about limiting Ct scans and potential accidental overdoses? Or the recent news story of possible radiation induced benign tumor or cancer from multiple Ct scans in your lifetime? Reducing medical costs for our health care is not the major reason to reduce our total cummulative life time low dose man made diagnostic and therapeutic radiation exposures.

No one wants to scare any of us, but inquiring minds might want to know more about mammograms, if so please go to http://www.iop.org/EJ/abstract/0952-4746/29/2A/S08/
and there are many more research articles in the side bar

It is scary to me that proven results of the 2005 BEIR VII National Academies of Science reports have not been fully implemented by all government agencies to protect the public, especially women and children. In 2008, then Senators Obama and Henry Waxman thought it was important to publically list the additional risk levels for women and children separately as REFERENCE WOMAN and REFERENCE CHILD not just the old obsolete 1990's REFERENCE MAN and wrote to the EPA a short 2 page letter requesting published RAD RISK info for women and children. They were told it was still in the works by former EPA Adninstrator Stephan Johnson who wrote that REFERENCE MAN was totally obsolete in his reply to them.
http://www.ieer.org/sdafiles/16-1.pdf

And in October 2009, still nothing has been done by the new EPA Administrator Lisa Jackson to make the public more aware of the additional vulnerability of women and children and our grandchildren and the higher overall risk for young women, especially pregnant women with their early first trimester fetus at greater risk.
This longer 5 page letter from Honorable Rep Ed Markey MA is the most recent communication I can find, he was requesting a response from EPA Administrator Lisa Jackson by Nov, 17, 2009, I do not know if he got one yet,but her EPA office staff could not provide me with a copy of her reply to him and suggested I contact his office, but I am not in his district or state.

http://www.ieer.org/campaign/Markey_102709_epa_radiation_letterfn.pdf

This is a brief summary of the campaign and major talking points for a healthy start RAD protection program for the US
http://www.ieer.org/campaign/talkingpoints2.pdf

You can find more solid information from this organization at http://www.ieer.org

And below are two good background resource articles I found earlier that further document this obsolete and inadequate REFERENCE MAN risk calculator still being used by other government agencies.
http://www.womensenews.org/story/health/071113/reference-man-may-lose-radiation-modeling-job
http://blog.cleveland.com/health/2009/01/feds_too_slow_in_revising_canc.html (This is an article I was prohibited from passing on to our braintrust,org meningioma list because I was told it is too scary. I believe they have a right to know what is going on and I felt an obligation to warn them to be more careful about how many CT scans they have, and would have suggested they ask for MRIs instead)

What can ordinary citizens like you and I do about this issue?

Please contact President Obama, the new Environmental Protection Agency Administrator Lisa Jackson, and Massachusetts House Rep Ed Markey with your own thoughts and opinions.

Simply ask them to make sure the most current scientific radiation risk data from BEIR VII 2005 is being used and published in all EPA materials on their website and in FDA medical device warnings about CT scans and in the radiation control standards used by all other government agencies relating to water, soil and air pollution particles from medical and industrial radioactive waste, including old xray equipment in dental offices and local community hospitals and other private medical facilities. Not just more piecemeal political patches and continuous procrastination with long draft revisions being passed around behind the scenes between advisory councils and committees etc as was done in the past. It is not being fully implemented by all other federal and state radiation control agencies like OSHA, FDA, FCC, NIOSH and NTIA hoping not to rock the boat for past administrations and now for the current administration.
The EPA recognized in a private response to me that their Radiation Protection Guidance report for diagnostic medical x rays FRG 9 is now thirty years old and they plan to revise it soon. Isn't that great news? (My sarcasm here) CT scans were not used by most doctors thirty years ago, and now almost every doctor uses them regularly for all their patients. And the federal and state government agencies responsible have still not solved the long term storage and transportion issues of removing radioactive waste from military, medical and industrial uses. How long has congress been discussing, debating and procrastinating on Yucca Mountain storage possiblities? And now they want to fund more nuclear reactors because we need more electricity, IMHO they like boys are playing with fire.

You can also copy your request and opinions to other Energy and Commerce Committee leaders, the Honorable Chairman Henry Waxman, the Honorable Joe Barton and the Subcommittee on Energy and Environment leader, the Honorable Fred Upton.

For congressional contact information go to www.congress.org or use the congressional widget located on my blog page. The mailing address for EPA Headquarters in Washington, D.C. is:

Administrator Lisa P. Jackson HQ
Environmental Protection Agency
Ariel Rios Bldg
1200 Pennsylvania Ave NW
Washington, DC 20460
HQ Phone 202-564-4700 Fax her office at 202-501-1450
To send email: Jackson.LisaP@epa.gov

A support Healthcare, not Warfare Fax to your elected officals

2009-10-28T16:28:00.000-07:00

http://pdamerica.org/misc/RESOLUTION%20LANGUAGE.pdf

Ask our US Congress to pass Health care for all Americans, not endless warfare in other countries.

Meningioma fatality or insurance company death panel?

2009-10-24T17:51:00.000-07:00

Please read all about the real Norma Rae, you can google her name for a ton of articles about her life, her work, her marriages and her children and her fight for the working poor, especially women in this country, remember cute Sally Fields as the female union organizer in the movie?
The real Norma Rae, Crystal Lee Sutton died two years after being told she had a meningioma, turned out to be a malignant brain tumor. For more information you can start right here

http://www.crystalleesutton.com/tn_article.html

MORE HEALTH CARE, NOT MORE WARFARE

2009-10-20T01:15:00.000-07:00

"First they ignore you, then they ridicule you, then they fight you, then you win." -- Mahatma Gandhi

I'm ready to win this time, first I was told it was all in my head, then in 1992-3 congress ignored all women including me and Hillary, then one dotor ridiculed me by calling me a brain tumor damaged survivor and a naive pathetic pawn of the evil feminists. Now I am being asked
not to write any political comments and personal suspicions about longterm brain radiation injury are too scary. LOL I'm an old lady, I wouldn't scare anyone lol
I was asked not to write even about vital changes underway in our health care system on the main serious meningioma www.brain trust.org email list, but really everything is political, especially the safe non-invasive drug I use to control meningioma tumor regrowth instead of radiation treatment.

After reading the October 2009 "Thats Outrageous" article in Readers Digest about the
billions in waste, abuse and fraud in our current health care system. Eliminating waste fraud and abuse of the health care system saves60 billion a year lost to fraudulent practices and scam artists.

I think if they water down the current bill without any additional coverage option for unemployed, self employed, private contractors, and small business owners, it will not bring costs down or be worth voting for. We have to get some public government plan passed and get a bulk discount for common drugs from pharma and
so we could see from elected officials vote where they stand, whether they are seriously voting for ordinary peoples best interst instead of their own. Medicare even made payments to deceased doctors in some medical scams and we all end up paying for expensive emergency room care unless everyone can sign up for a primary care center. Some doctors and ERs are recommending defensive excessive medical tests to avoid lawsuits from patients and some professionally criminal doctors who scare people into unneccessary expensive and dangerous procedures.

We can win with HR 676 with either a single payer to private providers or a public option for an affordable health care plan like Medicare for the working class who want to sign up. We have been paying all elected politians, 2 million federal employees and public policy decision makers billions for years
to recommend national plans and cost effective public health maangement issues for twenty years and this information as been available to all. This is not rushing into anything new. Approximately 40% of Americans get federal health care, Medicare, medicaid or VAMilitarycare or SCHIPS childrens health care already, extending a public option to currently unemployed and working adults who do not get it as a benefit with their job, (mostly low paid women workers and hourly part timers or independent contractors)will not bankrupt the private insurance industry.

Please read the bill HR 676 and read the list of your house members who supported it early on and have now backed down for some reason, compare that with how they voted on endless war supplmental funding,the bailout funding and stimulus package.
If they voted to use our tax dollars to save Wall street firms with bonuses and big banks and the insurance giant AIG and the auto makers plus package to big government spending, they are just not voting for ordinary working people, or the least of these without a job that currently lack health care coverage.

IF they are still voting for the special corporate interests that got them elected, if they can stay in for two terms they get life time benefits and retirement plans while the poor and unemployable like me who can not help them in return get nothing. Not an end to the deadly military guerilla fighting abroad that kills so many innocent civilians,destroys their communities, and not even decent health care for our legal citizens and their family members here, if they ever get really sick.

Affordable care must be an option for all those wise enough to realize they need to have coverage in case of emergencies or serious illness. We pay for all the others anyway, no one gets turned away at the emergency room, or charity hospitlas, but that is a very expensive way to provide health care and it denies prompt ER treatment to tax paying insured citizens, if the uninsured can have access to a local public clinic or urgent care center we would all have saved everyone some money.

From what I have read so far, I think HR 676 is the best bill to attempt to provide national health care coverage for Americans that guarantees the Patient Bill OF Rights and has:

a .No exclusions for pre-existing conditions,
b. Guarantees access to essential services and benefits,
including appropriate cognitive rehabilitation for stroke, any brain injury etc
c. Places limits on cost sharing and provides drug discounts
d. Satisfactory local or out of network provider services for specific specialityfor brain tumors and other specialists and home nursing care if they need it
e. No annual or lifetime limits on coverage
f. Consumer protections, medical minimium standard regulations and more public
transparent accountability to eliminate medical errors and poor quality service.

I hope some of these issues will be effective immediately, but if we don't speak up none of them will happen for 3 or 4 years on a good day, if they pass some bill.

Basic coverage of cognitive rehabilitation for brain injury has been recently implemented by United Health Care and Anthem Insurance Companies, Anthem Health Plans, Anthem BC/BS and we need to make sure it is added to TRICARE for our returning service members and included in our national public plan to foster improved behavioral remediation especially for younger adults surviving tramatic brain injury and maternity care for pregnant young women and reproductve rights for all women. IF men can get viagra included for themselves,they ought to give women the pills they need to protect themselves.
To see more legislative brain injury issues and take action
You can go to http://capwiz.com/bia/issues/

I have not met anyone who pays as much in monthly premiums as my husband and I.
I suspect no health plan will come or be implemented soon enough to help us, there maybe a few years before it takes effect even if it passes this fall. Now my husband pays 24,000 a yr for both our good private individual plans, mine is $960 a month from United Health care and his Aetna is up to $1235.00 a month in October 2009 which is triple what we paid ten years ago, He had to change his Aetna to a $5000 deductibe in order to get back under $1000 a month premium. the investigational, off-label use of Mifepristone=Mifeprex to control meningioma regrowth is not covered by any prescription coverage plan and costs him $6,000 a year which is triple what it cost just four years ago. The first time I took it for three years in the 90's it was free in a NCI SWOG trial. and United Health Care dropped all my prescription coverage years ago.

Rising medical health care costs have made the current private insurance system unaffordable for most middle class American couples, no kids at home and no family plan for us, because my tumor condition and between 55 and 65,self-employed with pre existing conditions. (Oh who can afford $30,000 a year to buy a brand new car??)for health insurance, when we are both healthy right now. He never had a heart attack, but had a stent put in near his heart about six years ago as a preventative measure after one of those high priced corporate executive physical exams before he switched jobs

Its how how we spend money, its about regional geographic variations in medical costs
differences in retail medical costs without insurance, and health insurance
discount contracts for large companies and unions etc high specialty costs, or generalists costs, money is fungible, but the radiation doctors are getting rich and often they do not care for their own patients in the infusion centers or radiation treatment rooms.

Dr Andrew Weil, a famous Az doc of nutrition writes most radiation docs make a million a year, while primary care docs and general surgeons often make only enough to cover their office costs and malpractice insurance, not real profits. I think we could do the math and balance the medical\hospital costs more evenly if we wanted to by averaging regional differences state by state. SOme states cost much less, but opening up the state systems to giant corporations without having any anti trust laws seems stupid to me. Unless ironically it may mean someday we will all owe our souls to the comapny store all over again.

(This is my original rough draft, if you send me your comments I may be able to revise anything that seems offense to someone else, at least I have found my own voice again and have been able to speak up loud enough to be heard. THANK YOU FOR READING THIS FAR

Mary Lauder's experience in Australia

2009-08-19T15:07:00.000-07:00

http://www.mja.com.au/public/issues/187_11_031207/lan10997_fm.html

Bill Moyers Journal on PBS Friday night, 7/24/09 on health care reform http://www.truthout.org/072209V

2009-07-23T05:19:00.000-07:00

And please read the article at http://www.truthout.org/072209V

Meningioma Talk - women's medical rights

2009-07-21T01:38:00.001-07:00

Meningioma Talk - women's medical rights

Shared via AddThis

Compassionate use of mifepristone

2009-02-03T02:06:00.000-08:00

http://clinicaltrials.gov/ct2/show/NCT00832871?intr=Mifepristone&rank=6

Dear Good People,
I hope you can find an experienced medical specialist (a well read, up to date doctor) willing and able to prescribe this drug for your investigational use for small meningioma brain tumor growth control. It is well tolerated and I know several women including myself who have taken it for many years. Maybe now under President Obama's new federal administration guidelines your doctor could prescribe either drug brand name Mifeprex or Corlux for your own current neurological condition. If you look at the other national clinical trial locations where it is currently being tested for other conditions like fibroids, endometeriosis, pituitary tumors/adenomas and cushings disease symptoms, you would find a qualified clinical trial investigator geographically nearer to you who can prescribe it and you would not have to ask this doctor in the New Mexico clinical trial newly listed above.

In the near future I hope and pray it will finally be covered as a less toxic cancer drug for more people by our health insurance plans, if might already be approved as a cancer drug in California. Perhaps if you copy and printout this recruiting Jan 09 clinical trial information above for mifepristone and take the FMFoundation article medical notes on my blog to your own qualified doctor of neurology or neuro-oncology, he will look into it and seriously consider it for you once he is more informed of its other modern beneficial medical uses especially for women that have been ignored and/or dismissed for many years by many people and established medical institutions because of all its negative publicity as a "baby killer" by anti-abortion advocates.
Drugs themselves are not immoral, they are chemical objects and medical tools in the proper haands, it is their use and/or adult abuse by some doctors and people that we make laws to control. Any cancer drug, even aspirin could kill YOU or your baby, if YOU abused them or gave someone else too much, but we do not make them illegal, prevent the sale or deny a qualified doctors prescription use for those who benefit from standard accepted medical uses of them. Mifepristone is still not available at most pharmacies for any use.

Please ask your doctor to look up the medical research on Mifeprex and Corlux, both are Mifepristone, a safe, effective non-surgical women's emergency contraceptive for the first 50 days of pregnancy and the "morning after" emergency birth control pill that has been around for thirty years, but mostly illegal and unapproved in the USA today because of the media hype of powerful anti-abortionists. I believe it is morally wrong to deny this modern medical drug care to brain tumor patients, mostly women, who would benefit without medical harm from its use.
GBYAY Anne McGinnis Breen

Mifepristone for meningioma brain tumors, breast cancer, cushings disease,

2009-01-13T23:03:00.000-08:00

Some Other Beneficial Medical Uses of Mifepristone from the FMFoundation website
In addition to its use in terminating unwanted pregnancies, MIFEPRISTONE (formerly known as RU-486) also may be effective in treating a range of serious diseases and medical conditions, many of which particularly affect women. Yet U.S. clinical trials for most of these uses have come to a standstill due to anti-abortion politics.

A B O R T I O N & F E R T I L I T Y C O N T R O L
Available to women in many countries, mifepristone was the first in a new generation of fertility control agents that can terminate an early pregnancy. Mifepristone works by blocking the action of progesterone, which is necessary to sustain a pregnancy.
Mifepristone, taken along with a prostaglandin, has been used by millions of women worldwide and has found to be safe and effective as an early abortion method during the first nine weeks of a pregnancy.
A woman can take mifepristone as soon as she knows she is pregnant. Mifepristone is administered orally, is non-invasive, requires no anesthesia, and bears little risk of infection. Many women prefer mifepristone because the procedure is more private and allows them greater psychological control in ending a pregnancy. Administered with a single dose of a misoprostol (a prostaglandin given either orally or as a vaginal suppository), mifepristone has been proven to be highly effective in successfully terminating pregnancy. [1]
Studies also show that mifepristone is a safe, effective form of emergency contraception. [2] [3] Preliminary studies show, as well, that mifepristone can act as both a male and female contraceptive.

M E N I N G I O M A S
Solid tumors of the lining of the brain called the meninges, account for 29% of all primary brain tumors and 12% of all spinal cord tumors. (CBTRUS 2004, pg 17,18 Figure 6.) Meningiomas occur two times more frequently in women than men. [4]
Meningiomas may enlarge or become symptomatic during the menstrual cycle or pregnancy, and are also associated with breast cancer. These indications suggest that the hormones estrogen and progesterone influence tumor growth. By binding with progesterone receptors, mifepristone may inhibit the growth of, or actually reduce meningiomas size.
In one study, mifepristone was found to have some efficacy in the treatment of patients with inoperable meningioma. [5] Another study showed that mifepristone interfered with the steroid action that influences the growth of meningiomas, further demonstrating mifepristone's treatment potential with this type of tumor. [6] Meningioma patients have testified before Congress that mifepristone has helped them battle their disease. The Feminist Majority Foundation currently operates a Compassionate Use Program in which 33 meningioma patients, with special FDA approval, are being treated with mifepristone under their physician's care. Many of these patients report that mifepristone has eased their pain and suffering. Some have said the drug is saving their lives.

E N D O M E T R I O S I S & F I B R O I D T U M O R S
Ten to twenty percent of American women of childbearing age have endometriosis. [7] Mifepristone shows promise as a treatment for endometriosis, which is a chronic, painful, long-term disease that can affect women throughout their entire reproductive years.
In addition to its anti-progestin and anti-glucocorticoid properties, mifepristone is a non-competitive anti-estrogen. As such, mifepristone blocks the capacity of the endometrial tissue to grow in response to estrogen, making mifepristone a possible hormonal treatment for endometriosis. [8]
Similarly, researchers believe mifepristone is a promising treatment option for uterine fibroid tumors. [9] Fibroid tumors, which are present in approximately 70% of women and cause symptoms in 25% , are a leading cause of the more than 600,000 hysterectomies performed annually in the U.S. [10]In one recent clinical study, researchers found that mifepristone reduced the average size of uterine fibroid tumors by 50% within six months of low-dose mifepristone therapy and that the drug was well tolerated by the women who participated in the study. [11]

B R E A S T & O V A R I A N C A N C E R S
The American Cancer Society estimates 211,240 cases of breast cancer will be diagnosed in 2005, with 40,410 deaths expected. Since 1990, the death rate has declined steadily, the result of improved treatment and early detection . However, since 1987, breast cancer incidence has increased by 0.3% per year. Breast cancer continues to be the second leading cause of cancer death among women of all ages, and 2.3 million women living in the US have been diagnosed with breast cancer. [12]
Mifepristone is an anti-progestin, which blocks the action of progesterone, and may be effective in treating progesterone-dependent forms of breast cancer. [13] [14] Experts estimate that mifepristone may be an effective treatment in 60% of breast cancer tumors, according to the National Surgical Adjuvant Breast and Bowel Project.
In animal studies in the Netherlands, mifepristone reduced breast cancer tumors as effectively as Tamoxifen, one of the most common and effective breast cancer treatments drugs. In that research, the administration of both Tamoxifen and mifepristone reduced tumors size more than each drug alone. [15]
A French clinical trial found that mifepristone might also be a treatment for tumors that have become resistant to Tamoxifen. In addition, this study reported that mifepristone reduced the pain caused by the metastasis of cancer cells to the bones. Trials have also been conducted in Canada and California to assess mifepristone as a treatment option for women who have breast cancer recurrences.
In 2000, ovarian cancer was diagnosed in approximately 23,000, and caused the death of more than 14,000 women. Ovarian cancer causes the most deaths of all gynecologic cancers and is responsible for five percent of all cancers in women. [16] A U.S. study reported in 2000 that for women with persistent ovarian cancer despite standard chemotherapy and radiation, treatment with mifepristone showed benefits in halting the disease in 26% of patients studied. [17]

C U S H I N G ' S S Y N D R O M E, P S YC H O T I C D E P R E S S I O N, & T H E H I V V I R U S
Cushing's Syndrome results from an over-production of the cortisol hormone. Too much cortisol can be fatal. The vast majority of Cushing's Syndrome victims are women, primarily in their 20s to 40s. [18]
Some forms of the deadly Cushing's Syndrome can be treated with mifepristone.(Brand name Corlux) The mifepristone compound is an anti-glucocorticoid: it binds to glucocorticoid receptors in the body and prevents the cortisol from binding. One important National Institutes of Health (NIH) study has shown that when persons gravely ill with inoperable Cushing's Syndrome tumors, more than 50% experienced reversal and control of the disease as well as complete regression of the Syndrome's physical features. [19]
Mifepristone has already helped patients suffering from advanced Cushing's Syndrome. Two of those survivors testified before Congress in 1990 that mifepristone saved their lives. [20]
Some studies indicate that the cortisol hormone plays a key role in the replication of the HIV virus. Elevated serum cortisol has been found at all stages of HIV-infection, particularly in late-stage HIV (AIDS) patients.
The anti-glucocorticoid properties of mifepristone make it a possible treatment for HIV and other cortisol related conditions and diseases. One in vitro study showed that by blocking cortisol, mifepristone lessened the infectivity of HIV and reduced the production of HIV by the already infected cells by 70%. [21]
As an anti-glucocorticoid, mifepristone is proving to be effective in treating several additional conditions and diseases that are caused by elevated levels of cortisol. These health problems include depression [22] , alcoholism, substance abuse, anorexia nervosa, ulcers, diabetes, Parkinson's, multiple sclerosis, and Alzheimer's. [23] Acute Psychotic Depression, which is manifest in 15% of patients with severe generalized depression causes symptoms such as hallucinations and paranoia. It is a disease for which no easy or readily effective treatment presently exists or is FDA approved. Patients are typically treated with either electric shock therapy (which carries considerable stigmatization), or dual drug therapy with anti-psychotic and anti-depressant medications. Unfortunately, both treatments can take weeks to months to have any significant effect. Because mifepristone can rapidly bring down the elevated cortisol levels associated with this form of depression, researchers at Stanford have been conducting clinical trials treating acute psychotic depression patients with mifepristone and the results have been very successful. Alan Schatzberg, MD, Chair of Stanford's psychiatry department likens mifepristone to "the equivalent to shock therapy in a pill" because in more than two-thirds of patients who took medium or high doses showed significant reductions in psychotic symptoms within seven days. [24] Because of these results, the U.S. Food and Drug Administration has put mifepristone on fast-track approval as a treatment for psychotic depression-it is the first drug for a psychiatric condition to be fast-tracked. [25]
You can find more overseas current research studies on mifepristone and cancer, chlamydia pneumonia, Epstein-Barr virus-immortalized B lymphocytes, and Hepatitsis C at PUB MED

Click Here to View a Brief Chronology of the Fight to Get Mifepristone Approved in the US.
[1] Spitz IM, et al. Early pregnancy termination with mifepristone and misoprostol in the United States. New England J of Medicine, 4/30/98.
[2] Baird DT, Dewar M, Glasier A et al. Mifepristone (RU486) compared with high-dose estrogen and progestogen for emergency postcoital contraception. New England J of Medicine, 10/8/92.
[3] Bygdeman M, Danielsson KG, et al. Contraceptive use of antiprogestin. European J of Contraception and Reproductive Health Care, 6/99.
[4] Association for Brain Tumor Research.
[5] Grunberg SM, et al. Role of antiprogestational therapy for meningiomas. Human Reproduction, 1994.
[6] De-Motta LA, de-Motta LD. Endocrine treatment of meningiomas: a review. Arq-Neuropsiquiatr. 6/95.
[7] Endometriosis Alliance.
[8] Kettel M, Murphy AA, et al. Clinical efficacy of the antiprogesterone RU-486 in the treatment of endometriosis and uterine fibroids. Human Reproduction, 1994.
[9] Eldar-Geva T; Healy DL . Other medical management of uterine fibroids. Baillieres Clin Obstet Gynaecol, 6/12/98.
[10] American College of Obstetricians and Gynecologists.
[11] Eisinger, Meldrum, et al. Low-Dose Mifepristone for Uterine Leiomyomata, Journal of the American College of Obstetricians and Gynecologists, February 2003.
[12] American Cancer Society. Breast Cancer Facts and Figures 2005-2006, 9/22/05.
[13] Martin JH, et al. Reduced expression of endothelial and inducible nitric oxide synthase in a human breast cancer cell line which has acquired estrogen independence. Cancer Letters, 9/20/99.
[14] Norris JD, Paige LA et al. Peptide antagonists of the human estrogen receptor. Science, 7/30/99.
[15] Klijn JGM, et al. Pre-clinical and clinical treatment of breast cancer with antiprogestins. Human Reproduction, 1994.
[16] Centers for Disease Control and Prevention.
[17] Rocereto, T. et al. Phase II study of Mifepristone in Refractory Ovarian Cancer. Gynecologic Oncology, 2000.
[18] Cushing's Syndrome Association.
[19] Nieman LK et al. Successful treatment of Cushing's Syndrome with the glucocorticoid antagonist RU-486. J of Endocrinology and Metabolism. 1985.
[20] U.S. House of Representatives, Subcommittee on Regulation, Business Opportunities, and Energy, Committee on Small Business. RU-486: The import ban and its effects on medical research. 11/19/90.
[21] Weiner et al. The glucocorticoid receptor type II complex is a target of the HIV-1 vpr gene product. Proc. Natl. Acad. Science, USA, 4/95.
[22] Wolkowitz OM, Reus VI. Treatment of Depression with antiglucocorticoid drugs. Psychosomatic Medicine, 9/99.
[23] Wolkowitz OM, Reus VI. Treatment of Depression with antiglucocorticoid drugs. Psychosomatic Medicine, 9/99.
[24] Wolkowitz OM, Reus VI. Treatment of Depression with antiglucocorticoid drugs. Psychosomatic Medicine, 9/99.
[25] Wolkowitz OM, Reus VI. Treatment of Depression with antiglucocorticoid drugs. Psychosomatic Medicine, 9/99.

PLEASE NO MORE HRT FOR MOST OF US

2009-01-04T02:24:00.000-08:00

My Dear Meningimates and other mildly overweight middle aged and peri-and pre menopausal women everywhere,

I believe the research study below part of the Womans Health Initiative confirms my medical experiences with a low grade 2 recurrent meningioma brain tumor and the documented potential harm of estrogen hormone replacement therapy HRT for others with meningioma and the beneficial effects of a selective progesterone receptor blocking compound called Mifepristone, if they include all the past the collected clinical trial data on women like me who had early hysterectomies, other women with meningiomas. pituitary adenomas or progesterone driven fibroblastic or fibrocystic type breast cancer.

In 1986 at age 39, I had a large 5 cm meningioma brain tumor surgically removed and gradually returned to an active fulltime working lifestyle one year post-op. I had clean MRI head scans for five years and I walked regularly everyday in the art museum in the mall where I worked. And I know it is not all about me, but... In mid 1992 at age 45 I was given premarin pills (dosages now greatly reduced) and a large estrogen shot right after a total hysterectomy for large uterine fibroids and endometriosis resulting in "my instant menopause". My MRI head scan later on, the end of 1992, the sixth year after the first craniotomy, suddenly showed a rapid visible enlargement of my small remainder of residual tumor in the six months I was on combined estrogen and progesterone HRT. I immediately stopped taking the Premarin and began to read everything I could find about our hormones and other types of abnormal fibrous spindle type bundles of cell tissue in female bodies like mine. Subsequently in 1993, I found a investigational clinical trial in California SWOG 9005 Phase 3 using Mifepristone which had already shown some success in French research on meningioma and in Phase 1 and Phase 2 of this US national trial by Dr Steven Grunberg, a progesterone blocking agent Mifepristone had been used to treat recurrent meningioma without any serious side effects. I felt it must have had some success to pass the first two levels of clinical investigation in the US. So it seemed like a good alternative drug option for a younger woman like me.

I believe if I had been able to legally to get this drug in the US right after my first brain surgery in 1986 I might never have had a significant recurrence of brain tumor or needed a second craniotomy or a total hysterectomy for fibroids either, but because of religious political views limiting access to the drug for early medical emergency contraception and the newly inflated rights of pharmacists and medical doctors to refuse to supply all women with information about all known modern safe drug therapies, many other women and I were denied this drug's other major beneficial lifesaving uses for women. This compound was illegal in this country for many years and this basic medical right and individual freedom to control our own bodily reproductive system is still politically at risk today. Bush and his political allies call this drug a baby killer, but for me it has been a safe prolife medical remedy for a common low grade brain tumor. And in 2007, Corlux, another brand name of this same drug Mifepristone was given FDA orphan drug approval for other women with small pituitary brain tumors called adenomas and other Cushings disease like symptoms like weight gain around the middle, shortness of breath, weakness and fatigue.

I finally had brain surgery again in 2000 for the recurrent tumor because they told me what had formerly been a soft tumor had invaded my skull bone and the clinical trial was also closed by the NCI Data and Safety Monitoring Committee as inconclusive in late 1999, but even my AZ State Rep Jim Kolbe couldn't get me the names of those committee people from anyone to answer my questions. However while I was on the Mifepristone, brand name Mifeprex, an early option pill, my recurrent tumor remained stable for three years as documented by head MRIs in the investigational study, but an Oct 99 Ct headscan showed extensive bony involvement not mentioned in my most recent August 1999 MRI so I decided to have it removed again although it was still small and not bothering me at the time. I was scared that the bony involvement meant it had progressed to a higher grade cancer, like breast cancer that gets into the bone. Now some docs seem to write that meningioma calcification in the bone may mean it has slowed down or stopped growing... but during 2003-2004 it began to steal more vision in the bony optic nerve canal of my left eye a few years after my 2000 surgery but my condition had not shown any medically written reported change in size on the August 2004 MRI. So I spoke to my doctors again and decided to take Mifepristone again in an individual investigational study approved by the FDA since Feb 05 and I have still not had standard brain radiation which was first recommended in 1992 by the southwest tumor board and repeatedly since then by several other well known excellent male doctors around the country after my second surgery in 2000 and again in 2004.

Procrastinating and being a little bit late is one of the things I always do better than most people anyway, LOL but better late than never and safer than sorry, I usually say...especially about my health care and driving, I still get there OK without speeding and I believe my attitude has actually helped me go more slowly through current brain tumor treatments and husbands (I'm still married to the same good guy after almost 40 years) than most other good women I know. I am still foolishly postponing (or wisely saving) some new type of brain radiation therapy for later on in my life, when/and if I am too old to have brain surgery a third time, especially if my vision gets worse. I know every year I procrastinate brain radiation equipment usually gets more accurate and safer in the trained hands of skilled radiation technologists. I wonder if repeated mammography can contribute much to the total life time cummulative radiation dose, probably not anymore, but it may have in the past.

Please, after you read this article below, do not let a doctor automatically put you on HRT unless it is a medical emergency, we are each genetically unique on a normal bell curve, it is "not one size fits all" and don't let your health insurance representative or any other doctor deny you at least annual MRI head checkups after a few years of clean MRI head scans after treatment for any brain tumor condition like meningioma, pituitary adenoma, acoustic neuroma, vestibular shwannoma, Cushings disease or Neurofibromatomas 1 and NF2 which might all have some involvement with progesterone hormone growth levels IMHO, and I am not a doctor or a nurse, but some women with progesterone sensitve breast cancer with high levels of progesterone in their tumor tissue samples might do as well to ask their doctors about a selective progesterone receptor modulating compound, similar to the blocking action of the anti-estrogen agent Tamoxifin, a old "designer drug darling" of breast cancer a decade ago and the newer ones like a drug called Avistan they use now for breast cancer, which I am guessing might help control meningioma tumor growth too, at least before radiation is given.

Some of my dear meningimates seem to have a higher risk for breast cancer according to research indicating a hormone level relationship there too, and having children and more progesterone reduces the risk of some types of breast cancer. Two of my sisters, me and my Mom have all had uterine fibroids removed, one sister now has lymphoma and another one has breast cancer, so we probably inherited some type of abnormal DNA cell growth from my Dad who died of cancer or Mom who also had a rare low grade large ovarian tumor successfully removed at 80 years of age, 4 of us girls have also had gall bladder removals, I know, I know, just too much good rich food and sugar, lol. My MOM was a great cook!

Please read this recent article below....and please write back to me about your personal experiences with HRT use and if you have had breast cancer to share what you know... Many thanks in advance before I go...GBYAY Anne McGinnis Breen

New study firmly ties hormone use to breast cancer
By MARILYNN MARCHIONE,
AP
posted: 10 HOURS 17 MINUTES AGO (OPHS the date is gone, sorry I must have lost it somewhere in translation from email to blog, please always check the dates on what you read )

SAN ANTONIO -Taking menopause hormones for five years doubles the risk for breast cancer, according to a new analysis of a big federal study that reveals the most dramatic evidence yet of the dangers of these still-popular pills.
Even women who took estrogen and progestin pills for as little as a couple of years had a greater chance of getting cancer. And when they stopped taking them, their odds quickly improved, returning to a normal risk level roughly two years after quitting.
Collectively, these new findings are likely to end any doubt that the risks outweigh the benefits for most women.
It is clear that breast cancer rates plunged in recent years mainly because millions of women quit hormone therapy and fewer newly menopausal women started on it, said the study's leader, Dr. Rowan Chlebowski of Harbor-UCLA Medical Center in Los Angeles.
"It's an excellent message for women: You can still diminish risk (by quitting), even if you've been on hormones for a long time," said Dr. Claudine Isaacs of Georgetown University's Lombardi Comprehensive Cancer Center. "It's not like smoking where you have to wait 10 or 15 years for the risk to come down."
Study results were given Saturday at the San Antonio Breast Cancer Symposium.
They are from the Women's Health Initiative, which tested estrogen and progestin pills that doctors long believed would prevent heart disease, bone loss and many other problems in women after menopause. The main part of the study was stopped in 2002 when researchers saw surprisingly higher risks of heart problems and breast cancer in hormone users.
Since then, experts have debated whether these risks apply to women who start on hormones when they enter menopause, usually in their 50s, and take them for shorter periods of time. Most of the women in the federal study were in their 60s and well past menopause.
So the advice has been to use hormones only if symptoms like hot flashes are severe, and at the lowest dose and shortest time possible.

The new study sharpens that message, Chlebowski said. "It does change the balance" on whether to start on treatment at all, he said. Even so, most women will not get breast cancer by taking the pills short-term. The increased cancer risk from a couple of years of hormone use translates to a few extra cases of breast cancer a year for every 1,000 women on hormones. This risk accumulates with each year of use, though.
The Women's Health Initiative study had two parts. In one, 16,608 women closely matched for age, weight and other health factors were randomly assigned to take either Wyeth Pharmaceuticals' Prempro — estrogen and progestin — or dummy pills.
This part was halted when researchers saw a 26 percent higher risk of breast cancer in those on Prempro.
But that was an average over the 5 1/2 years women were on the pills. For the new study, researchers tracked 15,387 of these women through July 2005, and plotted breast cancer cases as they occurred over time.
They saw a clear trend: Risk rose with the start of use, peaked when the study ended and fell as nearly all hormone users stopped taking their pills. At the peak, the breast cancer risk for pill takers was twice that of the others.
Think of it as President Bush's public approval rating, said another study leader, Dr. Peter Ravdin of the University of Texas M.D. Anderson Cancer Center in Houston.
"Bush's popularity may be 50 percent on average, but it might have been descending the whole time he was president," Ravdin said.
In the second part of the federal study, researchers observed just 16,121 women who had already been on hormones for an average of seven years and another group of 25,328 women who had never used them. No results on breast cancer risk in these women have been given until now.
Plotting cases over time, researchers saw in retrospect that hormone users had started out with twice the risk of breast cancer as the others, and it fell as use declined. Among those taking hormones at the start of the study, use dropped to 41 percent in 2003, the year after the main results made news.
In the general population, use of hormone products has dropped 70 percent since the study, said another of its leaders, Dr. JoAnn Manson, preventive medicine chief at Harvard's Brigham and Women's Hospital in Boston.
That corresponds with big drops in breast cancer cases, but some scientists have said this could be due to a fall-off in mammograms, which would mean fewer cancers were being detected, not necessarily that fewer were occurring.
The new study puts that theory to rest. Mammography rates were virtually the same among those taking hormones and those not.
"It is clear that changing mammography patterns cannot explain the dramatic reductions in breast cancer risk," Manson said.
"The data are getting stronger," said Dr. C. Kent Osborne, a breast cancer specialist at Baylor College of Medicine in Houston.
Women who do need the pills should not panic, though the doubling of risk — a 100 percent increase — for long-term users is quite worrisome, cancer specialists say. Although the new study does not calculate risks in terms of actual cases, previous research showed that the average increased risk of 26 percent meant a difference of a few extra cases a year for every 1,000 women on hormone replacement pills, compared with nonusers.
"Hormone replacement therapy remains a good health care choice to relieve moderate to severe menopausal symptoms," says a statement from Wyeth, which made the pills used in the study.
"Most women should be able to discontinue hormone replacement pills in three to four years," or at least reduce their dose, Manson said.
A future analysis will look at other women in the study who took only estrogen, generally women who have had hysterectomies.
—
On the Net:
Cancer conference: http://www.sabcs.org/
Hormone study: http://www.nhlbi.nih.gov/whi/estro_pro.htm
(This version CORRECTS that risk increased 100 percent, not 200). ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

DEAR GOOD AND WISE WOMEN,

You might also want to read the websites they mention above and my guess is that some of those who took old high dose birth control pills or extra estrogen alone after their hysterectomies might have an even higher risk of breast cancer or meningioma in some cases because I strongly suspect from what I have read that estrogen driven abnormal cell growth is more aggressive than progesterone related abnormal cell growth. But I may be wrong and we may all need some estrogen to help us feel sexy. Remember we are all normal across a gradual bell curve that has equal numbers weighing on both sides of normal either way and progesterone levels are highest in our bodies when we are pregnant in the third trimester. I don't need to worry about that anymore. I have 3 grown kids and I never took birth control pills which also contain extra hormones. I think it is pretty surprising they do not mention birth control pills at all in this report above since most women today have taken them for some significant length of time in their busy lives and for other medical reasons.

PS BTW girlfriends, I just went and had my mammies grammed again and they were OK, I only got squeezed twice for two ### sets, but my sister had a brutal experience last month while her breast was still tender from her first surgery, because they took three sets of punishing tight pictures in a row while she was crying and then bluntly told her she needs another surgery right away, after her initial report was more positively all clear in her lymph nodes. I really do object when the routine mass produced medical system becomes so uncaring, impersonal, and uncompassionate when/if they are taking out their own frustrations at work on the people they are supposed to be serving. My head was checked by Nov 08 MRI too and "the uninvited guest in my attic" to steal the exact words of another meningioma survivor I read about, and I are both as stable as it gets at my age, in more ways than one....LOL Please forgive my 'sick" sense of humor, I'm a real granny now 61 So go get your MAMMies grammed before you forget. That begins to happen normally at my age too...whether I am like Maxine or like Martha, actually most of the time I am some of each, a period of hot flashes and/or cold sweats without hormone replacement therapy didn't bother me, or my mother for long. Maybe we have them for a reason? We still live longer than men and besides we women are all sisters in my mind.

GBYAY Anne McGinnis Breen

See my ponytail bouncing and my smiley face winking at you? &;>)

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Courage in women is often mistaken for insanity.
~ ~ ~ ~ ~ ~ ~ ~ ~
Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!

28 questions to ask your medical team about a brain tumor diagnosis

2009-01-03T12:03:00.000-08:00

28 Questions to ask your medical team, maybe 150 things really, to think about and talk over with your significant others and a social worker over a period of weeks or months.

Take your time, and go slowly, especially if your symptoms are non-existent or still manageable, if it was found accidentally and is going to be elective surgery, it may not be a medical emergency and you probably have more time to check with other doctors and make sure you have full coverage for the anesthesiologist before elective surgery. If you just want it zapped quickly before you have any symptoms or seizures, you won’t ever know for sure what type of tumor it was without some surgery or at least a needle biopsy. These are questions to ask especially if he/she is recommending IMMEDIATE surgery or radiation for your apparent brain tumor, meningioma, acoustic neuroma, vestibular schwannoma. pituitary adenoma or any other presumed to be solely by visual MRI diagnosis a low-grade brain tumor etc. (meningiomas often have dural tails, a visible attachment to the middle layer of the lining of meninges called the dura matter) The post-op pathology report or a surgical biopsy will be more accurate. Initial misdiagnosis of tumor type (there are 120 types) is a common problem with MRI film readings.
. No one gets or needs answers to all these questions below at their first few appointments.

Many are things to think about discussing and planning ahead with family and loved ones or to discuss with a hospital social worker. Please bring someone you trust with you to take notes at all your appointments, no one hears or remember the entire doctor's words exactly the same way once he says probably low grade or benign. Please write down and make copies of all your current medications, supplemments and any known medical drug allergies you have to give to your doctors and have with you at all times. This information is way too important to trust to your memory alone on this issue right now.

You can get plenty of additional reading material about brain tumors and/or your planned treatment online from your search engine or at www.google.com You can easily get all the valuable free printed literature from the major national brain tumor (spelled tumour in Oz, UK or Canada) associations for your family to read and share together or read alone at their own pace.
Click on http://www.virtualtrials.com/ to see the list of brain tumor centers that give free consultations and free second opinions marked with a red star. Scroll way down to the very bottom of the first page. There is a contact list of fine doctors there too.

Please get Nancy Conn Levin and Lori Levy's excellent meningioma brochures ( they are both long-term meningioma survivors) and other meningioma resources online from the Brain Science Foundation website and Dr Paul Zelter and Dr Steven Brem and Dr Peter Black all have new brain tumor treatment planning books.

ASK YOUR MEDICAL TEAM
1. What specific operational approach, medications or procedure are you recommending for my condition? a. If it was your son or daughter what would you do? Not your first wife, or your mother-in law LOL (that’s my sick tumor humor, please forgive me)… b. Who would you recommend I go to for a second opinion? (BE SURE to get another opinion if you are not satisfied with your doctor or the hospital system and your symptoms are still manageable. Perhaps two or more if you want, men often like to triangulate, 3 can be a magic number, if two different doctors or two different brain tumor boards agree you are really good to go AHEAD
This is YOUR brain, YOU AND YOUR LOVED ONES ALL want to be fully satisfied with YOUR OWN treatment and the doctor afterwards, as well as before.

2. Ask what kind of medical equipment do you use? Do you have 3D MRI etc and computer guided treatment equipment? How old is your equipment and the radiation element? Can you explain how much radiation exposure my healthy brain will get? What are hot spots? How skilled and experienced is your staff? (There are different types of radiation, FSR, IMRT and many brand names of specific brain radiation machines now like Gamma knife, Electra knife, the Linac Accelerator, Proton Beam, Cyberknife, Novalis, Trilogy etc.) They count units called rads and greys, GK is generally one direct shot, IMRT is generally given over five weeks, and some others are in between or a few multiple doses.

3. Can I have free copies of my printed MRI report, surgical report and pathology report? a. Can I get a free copy or computer disc of my MRI film and my records? (You can send them to other major medical brain tumor centers that have free evaluations and consulting services.) b. Can I get my complete medical records on a CD? c. Can I get my post-op pathology report and send it for a second opinion to a recognized neuropathology specialist before I decide about more treatment if neededafter this treament? Many folks have written to me since I first put this list of 28 questions together in 1998 thanking me for the tip about getting a second opinion of their pathology report by sending out their tumor tissue sample slides to a national neuropathology expert after their surgery. (Note: If you ask for some personal MRI copies BEFORE the scan appointment, it maybe easier to get them for free or at a reasonable cost, if you keep your own previous annual MRI films, you are always ready for your next appointment, they can not say they lost them, and you can learn to compare MRI films yourself with your doctor on his light box if you want.

4. How many different ways of treating my condition and other craniotomy approaches are there for my tumor location? a. Will a biopsy be done first? b.Will hormone receptor tests be included in the pathology report? c.What other brain tumor pathology testing do you do currently do here? d.Why does your doctor want to do the operation or procedure one way instead of another? (Note: There are several different ways to gain access inside your skull and tiny endoscopic tools through the nose and other skull attached equipment (with screws or face masks) depending on various tumor locations and brand name equipment available) Treatment options and outcomes do vary based on your general health, age, tumor location, the hospital treatment facilities and the experience and skill of the doctors and their neurology ICU staff and nurses. Just like buying real estate, location, location, location.

5. Why do you think I need this operation or procedure now? To relieve my pain? To reduce my symptoms? To improve my body functions? To diagnose my condition/problem? To save my life? (One doctor may say you need surgery immediately, another one may say you have a few weeks to fit into his operating schedule, maybe 6 months or even a year or more to consider any future treatment if it is still small, less than 1 or 2 cms and to see if it changes or grows at all, especially if you don’t have any symptoms.

You can choose what you are going to be most comfortable with based on the medical information you have gathered and been given and your own life situation. Please do not let any nice local back and spine neurosurgeon working alone, (who may be a very smart, sweet guy, but has not done plenty of brain tumor removals) operate or radiate you or your loved one. Dr Paul Zelter says at least 50 a year, that's one a week, some good brain removal neurosurgeons at large hospitals work in teams and do several hundred cases a year )

6.What are the risks/side effects/complications or neurological deficits associated with my condition or this procedure and/or medications? And afterwards? a. Is it written down anywhere for me in printed materials? b.How common are these risks/side effects/complications? c.What is the current location and size of my tumor? What functions and parts of my brain or spinal cord may be injured temporarily or permanently by this tumor or this treatment? How will you monitor any of my mental and cognitive changes? Can I have a full neuropsychology evaluation before my treatment as a future baseline indicator of cognitive and emotional function?

7. What are the advantages and benefits of this particular surgery or procedure? a. What is the next most frequently used treatment? Its advantages or disadvantages to standard treatment? b. How much hair will you shave? (Don’t worry it grows back). But will I lose any hair permanently from radiation? What will my followup care be and who will I go to? What if I have or develop seizures afterwards? c. Will it include annual MRI's for the rest of my life? I hope so for your own health and future security.

8. How long do you anticipate the surgery or this procedure will take? How long will my family and loved ones have to wait? Where can they wait? It may only be a few hours, or many more or even daily for five weeks depending on treatment type and possible outcomes. Hospitals often have special rates at nearby motels or Hope Houses, and free medical air flights are available if there is any real financial need. The National Cancer Institute in Bethesda, Maryland has a brain tumor study treatment program run by Dr Howard Fine that can help financially,. if they take your case, like they did Bonnie Lovetts case.

9. Is this surgery/procedure considered novel or experimental in any way? a. How many times is it performed in the US each year? b.Is there any good reason to try something that is not standard surgical care or a biopsy first so you get a pathology? Some people like to be the first for something new, how about you? Its your choice.

10. How many meningioma patients with this specific type or location of brain tumor do YOU treat each month? Annually? Can I meet or talk to some of your previous BT patients? Are any of your BT patients recovering in the hospital today? Can I visit with them? a. How does that compare to other doctors/facilities/teaching institutions in this area? Regionally? Nationally? (Maybe 11,000 to 15,000 M's were diagnosed annually fairly recently and the numbers keep growing from 4,000 a year a decade ago, before they were actually counting them at all) b.What are my own priorities now? Cost wise too, should I travel far away to a national medical center for the most well known doctor or fastest treatment and be away from home, family and friends, or is the major regional medical center or state university teaching hospital going to have skilled, competent physicians, a good neurology intensive care dept and experienced medical nursing team and be more convenient for me and my family and closer for follow-up visits in the future? Or the nearest local hospital or local GK center? Your choice.

11. What are YOUR final results with this condition and this type of surgery or treatment? (Note: Choose a neurosurgeon, radiologist, neuro-oncologist and/or oncologist and staff who have plenty of experience with removing and treating brain tumors, not just back or spine surgery.. Ask and find out how familiar they and their medical team and technicians are with their newer computerized radiation treatments and their new surgical equipment too)

12.What kind of anesthesia and pain killers will be used? Is there a choice? What are they? How long will I need them? What about anti-seizure meds? How long will I need to take them? When can I wean off of them? , When do my state laws let me drive again if I do have a documented seizure? Some doctors prefer to give anti-seizure drugs as a precautionary preventive measure. Always check with your doctor before stopping any medications, especially any anti-seizure drugs, and ask what side effects to lookout for...

13.Are there new chemotherapy treatments and clinical trial treatments available at this hospital that you know of? ( You can see a regular oncologist to ask about other drugs and chemos like hydroxyurea, tamoxifen, thalidomide, alpha interferon II, Temodol(temodar)Mifeprex [mifepristone] Corlux for Cushings symptoms,some meningioma and pituitary adenoma treatment too, (IF it is small less than 1 or2 cm or inoperable, if you do not want brain surgery or brain radiation yet for a slow growing 2 to 4 mm per year benign brain tumor with a few minor or no new symptoms)

14. Should I continue to take all my regular medications, including thyroid medicines, hormone replacement therapy? What about birth control? Would an oral contraceptive or birth control pill like Ru-486, or another selective progesterone receptor modulating compound help stop my tumor from growing or returning? 80% of benign meningiomas have high levels of progesterone receptors. (You may ask for a needle biopsy of unradiated tumor tissue sample or maybe soon some new diagnostic blood tests) What about Norplant? NO Norplant, it is contraindicated for people with intracranial lesions! NO Hormone replacement therapy, it may also contribute to tumor growth. What if I am pregnant? Or want to get pregnant? OR need extra hormones because of another condition? Some doctors do not advise pregnancy, some young women have successfully had children before and after meningioma treatment, if this is an issue, please visit the Meningioma Mommas website (Note: These tumors are often thought to be growth hormone related, some medical researchers say stimulated by pregnancy, progesterone, estrogen and/or perhaps peri-menopause hormone fluctuations and the use of HRT for menopause)

15.If I don't do anything about this problem, what's likely to happen? I know several m patients who have waited up to 10 years before they had to take any risks of surgery or radiation therapy because it didn't grow and they had no serious symptoms. Watch and wait again (WAWA) does not automatically mean whining! It means check with MRI annually, but please make sure they compare it directly to your first one, not just the most recent previous one.

16. Is one alternative to immediate invasive surgery or radiation treatment "watchful waiting"? What are the risks for me if I choose to watch and wait for a while? What if I really want to wait until I finish school, move closer to family or do some other financial planning for my family? What if I just want it done right away to avoid an agonizing wait? Make the personal decision you think you can live with and then let go and let GOD.

17. How might this surgery or treatment option affect me and my family--financially? Physically? Mentally? And last but not least, emotionally? Can I get a complete neuropsychological evaluation right now, for comparison purposes later on? Especially later on if I need ant cognitive retraining or cognitive dissonance brain rehabilitation for my mental health, not just for physical or occupational therapy.

18. What is your follow -up plan if this surgery or radiation treatment does NOT work? HOW important is this to know ahead of time? We really need to see more large published longterm patient "quality of life" records of their quality of survivorship, not just 2 to 5 years post treatment and not meaningless reports that they are still alive and the tumor shrank a bit or didn't grow anymore. We need to know what previously treated BT patients are still able to do, and how well they function in daily living, work environments and their personal relationships much later on. How many doctors continue to see their former patients? How often? Not many, not much. You are lucky if you find one that does, you may need to find a good neurologist and/or an endocrinologist, an ENT, Ear, nose and throat specialist or a neuroendocrinologist afterwards We move and they move around geographically now more than ever.

19. How much of the cost of this treatment will my own insurance/Medicare cover? How much will I have to pay out of pocket? Is the best anesthesiologist also fully covered? When or will any new employers health insurance ever cover my preexisting condition? Try not to lose the health insurance you have, look into cobra if you lose your job (Note: You may also have to call your insurance company or HMO for more information, especially if you want to go out-of-network and out of town for treatment.)

20. What effect will this surgery/procedure have on my other medical problems and medications? Double check all your drug interactions including supplements and natural products. Do you have a special Neuro ICU department and staff? It is hard to say how long anyone will be hospitalized in the Neuro ICU.(The first time I was in there for two days, the second time just for a few hours)

21. What other medical costs or medications will there be after the surgery or this procedure? a. Will I need cognitive therapy? Physical therapy, or a neurophyscologist afterwards? b. Will I still need radiation as follow-up to a careful, cautious partial surgery (called debulking) who will pay for my health care if I lose my job and my health insurance? What if they think I am lazy or indolent, or just malingering or incompetent because of some cognitive changes? Or what if they let me go because I am such a business liability? Some folks decide not to tell their new employer, but that was too stressful for me to maintain such dishonesty.

22. Can I donate blood before surgery to have on hand in case I need it? a. Can others donate blood for me too? B.Do I have time to think about this? (Donating your own blood several weeks before surgery is called "autologous donation" not often needed, but each case is different depending on tumor location and size or if it is near a major artery or not, sometimes a procedure to block some blood capillaries is performed pre-op as a first step .)

23. How much medical care and housekeeping assistance might be needed when I first return home? a. Can my family care for me? Can I get other extra nursing help if needed? b. When can I drive again? Who can drive me or my kids in the meantime? Who can bring in some meals or can I plan some frozen dinners ahead of my recovery time? You may be home in two or three days or a week, you might want to keep your head elevated or sleep in a chair, you might not be comfortable bending over and putting your head down right away, a few maybe hospitalized for several weeks and some may need vestibular balance therapy for a month or two, you may be driving again in a few weeks or not for six months or a year. Get to know the hospital social workers; they can answer a lot of questions about health insurance coverage and disability laws.

24. When will I be able to return to work, full-time, part time, and handle everyday activities by myself again? Who will help me with filling out disability insurance paperwork and social security payments if not? No one gets answers to all these questions ahead of time, but some discussion, planning and preparation just in case, might be wise to discuss and share with your significant others.

25. How long will I need medications for treatment side effects afterwards? a. What kind and how many meds? What are their longterm side effects? b. What if I am allergic to them? What allergic symptoms and/or drug interactions should I look for while on these drugs? (Last time in 2000 I just needed percodet for pain for a week. Back in 1986 I needed several anti-inflammatory drugs for swelling and antiseizure drugs for six months, the steroids made me think I was superwoman and. I was allergic to dilantin, and I got a red skin rash from it)

26. Do you have a copy of your Advance Directives? (Note: This is about life support decisions. This is a legal must before any hospital procedure and/or biopsy -- no matter how minor. Usually at large hospitals they have a notary available when you are admitted at 5:00 or 6 am ugh!) Do you have a living will, a legal power of attorney designated and health care proxy? Have you spoken to a few of your family members about how long you would want to remain on life support systems like breathing or feeding tubes if needed for your recovery? Each state has different laws; do you know what the laws are in your state? In some states, once they start with feeding tubes and respirators , it is hard to legally stop them.

27. After your treatment, please remember there is no guarantee they can prevent this condition from happening to you again. After any successful treatment we are in remission, but there is no known cure. How often will your doctor monitor your condition and give you follow-up MRI's? Semi-annual? Annual? It often depends on your doctor and your current insurance plan. Contrary to many current medical opinions, it still seems to me from available national statistics that the longer you have without any regrowth or any new recurrence, the more essential it is to carefully monitor your condition beyond 5 years into the unknown and unpredictable future.

As much as we would like to forget about it and get on with our lives like I did in 1986. It was finally documented again at 2 cm in 1992, six years later, after a few years of good clean MRI scans. Either they didn't accurately report its gradual regrowth from one year to the next, or the small residual tumor had a sudden growth spurt in late 1992, the same year I had a total hysterectomy for large fibroids and was automatically given estrogen shots and the old Premarin HRT for “ instant menopause" in those days.

28. Where can I get a SECOND and third opinion about all this? (Note: Many HMO insurance companies and Medicare required to pay for the second opinion, but you must often ask specifically for a second opinion from your insurance company. If a doctor protests, instead of agreeing and/or even recommending another highly respected INDEPENDENT, OUTSIDE doctor for a second opinion, you probably don't want him anyway!)

Go to www.virtualtrials.com to see the brain tumor centers list marked with red stars that still give free consultations. We used to all get free individual consultations from BT experts who volunteered at major national brain tumor conferences,, but that is not quite as common now either. EXCEPT IN NYC call Dr Patrick Kelly about early detection with MRI methods This is my short version, NOT REALLY, but without all my feisty editorial comments about glossy medical marketing brochures, the short term results, some medical insurance executives who try to practice medicine by rewarding doctors for not prescribing as many tests and the radiation brand name advertising materials. Etc, etc

Please read some of my other old posts before they disappear and become history which is always a mystery. The drug Mifepristone, a progesterone modulating compound I am taking since Feb 05 was used on meningiomas in France almost thirty years ago now, but its still not offered as a reasonable alternative drug therapy in the US because of FDA policy and political issues of male DENIAL and DOMINATION of women's health issues and reproductive health service options in full swing, or should I say still in a spin cycle of control and claims denial.

DENIAL is not just a river in Egypt. Reminds me of the incredible 12 year GBM survivor David Bailey singing a lovely song about the life-giving waters of the "Lost River" on one of his old cds, but the river wasn't lost at all he says, it was the people who were lost in the desert and several tribes didn't find the river again for many generations. It still happens today.My original 1998 version graciously shortened by Alan to one page of 28 questions to ask is currently on Alan's M pages at http://groups.msn.com/Meningioma/yourwebpage.msnw

This document is based on a list of ten general hospital admittance questions send in to the JHU m list by another dear meningimate from a 1997 Seattle Heart Hospital newsletter and my personal experiences.I have continuously updated it and revised it for the past ten years as excellent additional suggestions were sent in by survivors and loved ones to the JHU m list. I sent it out individually to many loved ones for their particular family member because it is too long for one email and I was told it was too scary, but I believe it is realistic . There are always more horror stories from friends of my friends who knew of my own brain tumor history; suddenly brain tumor patients seem to be everywhere!

The JHU m list was the first of its kind specifically for meningioma patients and their loved ones. The Healing Exchange Brain Trust m list was the very first of its kind and is the only one run by a group of BT survivors Believe you me, you should have seen the original standard online meningioma patient consultation form that dear Dr Williams posted online in those early days. Dr Williams, 50, died suddenly working out in the gym at JHU. He was a great man, one of the very few neuro-oncology doctors to have advanced medical degrees in both neurosurgery and brain radiation oncology treatment. In 1997 his standard patient form at JHU was a long list with rows and rows of boxes and spaces to list the individual dates of diagnosis and treatment of multiple tumors and multiple surgeries and radiation treatments the patient had previously had before coming to the experts at JHU. But that inadvertant warning form is long gone now, and the best neurosurgeons can often safely remove the entire tumor now without causing any permanent brain injury or recurrence Seeing that form scared me good into becoming my very own best medical health care advocate, doing my own medical meningioma research reading for homework.

And I still try to share what I think, so that others will have the incentive to carefully organize their own best treatment plan and avoid the “ambulance chasers” so they can continue to function and live successfully with this now more often chronic longterm condition. KISS, keep it simple sweetie, or keep it simple stupid, but always KISS, use whichever interpretation really self-motivates you to keep on keepin on!. You can try motivating yourself and others either way one time or another lol LOL We catch more bees with honey and if reverse psychology becomes much more popular we might all become bipolar lol KOKO Keep on Keepin on!

Just Never give up. GOD LOVES YOU ! KOKO I love you too my online M friends, guys and dolls. Drink lots of plain water all right? Eat right and sleep right too of course, it might be hard to find your new normal for a while. Just remember three lefts can make a right lol and please keep an open mind, lol that shouldn't be too hard after brain surgery, at least none of us are real airheads, there is CSF fluid in the gaps between ventricles. (Sick tumor humor, forgive me) Keep on walking, and talking and writing to those you meet along this spectacular journey we all share called life. It is a very precious gift for me to still be functional and able to share new hope, my layperson’s understanding and a few words of caution to others.

Please email me at anne91547@aol.com if you have any concerns, questions or comments and be not afraid.GBYAY Anne McGinnis Breen, now a twenty two year survivor of recurrent meningioma, diagnosed in 1986 at age 39, 5 cm in diameter in my left temporal lobe, orbital zygomatic approach craniotomy in Oct 1986, working full time one year later, and raising our three young kids, then a SWOG 9005 Phase 3 clinical drug trial of Mifepristone with Dr Steven Grunberg for four years and then a second craniotomy in 2000 at Barrows Neurological Institute in Phoenix,Az by Dr Robert Spetzler and his fine team of doctors, now on Mifepristone, brand name Mifeprex again since Feb 05.to current Dec 08 It is hard to find a doctor willing to prescribe Mifepristone for meningiomas,. But it now has another brand name Corlux also for Cushing’s disease symptoms of tumors or adenomas in or near the pituitary gland, BTW Dr. Cushing was the great neurosurgeon who named meningioma tumors many years ago and both of these tumor types have a much higher ratio of female cases..

Hello Good People

2009-01-03T11:48:00.000-08:00

Welcome to my blog I will return with some of my previously saved rambling articles and the list of questions to ask your medical team about brain tumors Ta Ta for now GBYAY Anne