My old blogger profile I just saved before it was deleted

Anne McGinnis Breen My new primary care family doctor found a 5 cm in diameter, left temporal lobe tumor dx and sx 1986 at age 39, after I had been having sudden sharp sinus headaches, occasional fainting spells, TIA'S were moments of profound muscle weakness and I had very heavy asnd exhausting menstrual periods. I was working full time one year post op and continued to raise our three young children. Then upon documented tumor recurrence in 1992 after a total hysterectomy for uterine fibroids and endometriosis I chose a 1992 NCI SWOG 9005 Phase 3 clinical trial of Mifepristone for meningioma with Dr Steven Grunberg 1995-1999 (my tumor was stable for three years on the real drug after I flunked the placebo the first year) instead of the SW Tumor board recommended immediate second surgery and six weeks of IMRT brain radiation in 1992. I continued to teach and raise our 3 kids for eight more years until they were grown and then I finally agreed to my second craniotomy in 2000 at Barrows Neurological Institute in Phoenix, by Dr Robert Spetzler and his fine team where they safely debulked it. Since Feb 2005 I am on 200mg daily Mifepristone, brand name Mifeprex, again in my own FDA clinical trial to current and my July 2005 MRI compares well and my condition appears stable and unchanged to my most recent MRI in Nov 2011. Its hard to find a doctor to prescribe MIFEPREX Mifepristone for meningiomas, another brand name is Corlux and now a new brand name Korlym for Cushing’s disease symptoms has been FDA approved. BTW Dr. Harvey Cushing was the great neurosurgeon who named meningiomas for many tumors found anywhere around the brain in the three layers of meninges lining the brain and many of these low grade primary brain tumor types like acooustic neuromas and vestibular schwannoma seem to have a much higher incidence in female than male patients. Women have a 50% higher risk of abnormal cells or tumors from the same life time total low dose man made radiation exposures as REFERENCE MAN, but the EPA doesn't mention it much. My favorite links for new readers to brain tumor info and clinical trial information are Al Musella's site www.virtualtrials.com and www.abta.org

FDA approves Mifepristone for some Cushing's disease symptoms(new brand name Korlym)

Here is the link to http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm292462.htm Korlym, the new Corcept Inc brand name for Corlux and the old generic Mifepristone might also help anyone with diabetes suffering from a pituitary adenoma brain tumor or a primary brain tumor pressing on the pituitary gland which is the master gland. The FDA News report mentions the word en·dog·e·nous ( n-d j -n s). adj. 1. Produced or growing from within. 2. Originating or produced within an organism, tissue, or cell: Mifepristone or Korlym is now FDA approved for endogenous Cushing's disease. I highly recommend that my new dear meningimates (my own affectionate term for patients and caregivers) check out their own symptoms if they are badly overweight, frequently tired and out of breath and have high blood sugar levels compared to a list of Cushing's disease syndromes and get a doctors referral for a second opinion from an endocrinologist before they have either surgery or radiation therapy if possible, and if their brain tumor is or was centrally located near and/or causing internal pressure on their pituitary gland. Remember, I'm not a doctor or a nurse, just an experienced and informed brain tumor survivor. In fact, neuroendocrinology is a tough course of study, its an advanced medical specialty with these two major fields of medicine overlapping, so highly skilled neuro-endocrinologists who can dispense drug therapies are few and far between in the US today.

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

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

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

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

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

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
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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

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