Proptosis- bulging eyeball symptom of meningioma, etc in Grand Rounds presentation 2010

My Dear Meningimates around the world,

Meningiomas are an international medical issue, not limited to the United States, many of my blog readers are from other countries. I wish I could help get our world leaders more focused on providing better medical health care options for everyone with brain tumors.

I came across this link last month and I was completely fascinated by meningioma case details of this woman and other possible causes and diagnoses on page 61 explained by this ENT (eye/nose/throat) doctor in his grand rounds presentation on proptosis. Learning more from the MRI pictures and the wealth of English/Latin mix of vocabulary medical terms using "google search" might be an interesting computer brain retraining exercise. Its so important to keep learning something brand new to stimulate our brain and sharpen our mental abilities. I had to start by taking a typing course and a computer course in order to go back to work.

A small remainder of my lower left temporal lobe sphenoid wing meningioma regrew after two major craniotomies eventually causing the gradual protrusion of my left eye and pinched optic nerve in the bony optic nerve canal about 10 years ago. Over the past twenty-seven years (1st sx 1986 and 2nd sx 2000) I had a large ovid mass 5 cm of soft fibrous spindle cell tissue completely removed, during second look surgery some bony involvement (hyperostosis) was scraped away from the bony canal around the optic nerve and some thin sheeting of en plaque meningioma was removed from behind my left eye socket. I have taken Mifepristone for a combined total of 11 years to successfully block meningioma regrowth. It is commonly available in China for this purpose as you can read in this report, but sadly not yet in the USA. I was not surprised to read his expert opinion about radiation risks for meningioma tumor progression after further radiation exposure either. One of my dear friends has the pseudotumor diagnosis, and there are many other types of eye proptosis from cranial trauma and developmental facial deformities described in this report. The Tan Tock Seng Hospital centrally located in Singapore where Dr David Law presented this in 2010 is well known for accident and emergency medical care in China.


Please feel free to pass the medical presentation link below on to others online who may want to learn more. 79 pages might be more than you ever want to know, so print a few of the more important or interesting pages ( like the proptosis chart on page 61) or pass the entire link below to your current ENT doctor or NS doctors. Promoting international medical cooperation among doctors in other countries can help all people. Health care options ought to be a global and national security priority in every country.



http://www.teigrandround.com.sg/images/gallery/1273824062_20100415%20DavidLaw%20OCULO.pdf



GBYAY Anne McGinnis Breen

My old profile I just saved before it was deleted

Anne McGinnis Breen
I thought I was being a hypochondriac, I had been to an eye doctor, a female gynocologist and finally a doctor of internal medicine who gave me a complete physical and found nothing wrong, just a "mildly overweight middle aged lady" he wrote. And finally my new primary care family doctor ordered a CT scan and found the 5 cm in diameter, left temporal lobe tumor dx and sx 1986 at age 39, after a year of sudden sharp stabbing sinus headaches, occasional fainting spells and now I know the TIA'S (transient ischemic attacks) were the sudden moments of profound muscle weakness I had. I had very heavy and exhausting menstrual periods too. I was almost relieved that there really was something wrong. After it was removed and I was walking and talking just fine I was told to forget about it and get on with my life. I was back working full time one year post op and continued to raise our three young children, but I felt enormous stress and fatigue and everything seemed much harder to manage and remember. I felt strangely emotional and weird to be crying so easily over everything.

Then in 1992 I had documented brain tumor recurrence six months after my total hysterectomy for uterine fibroids and endometriosis. Then since I had no headaches and it still wasn't bothering me like the first time, 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, the progesterone receptor inhibitor, after I flunked on the placebo the first year when my tumor continued to regrow) instead of having the SW Tumor board recommended immediate second surgery and six weeks of IMRT brain radiation in 1992 or 1993.

I continued to teach at a local pre school and raise our 3 kids for eight more years and then after the NCI trial was closed as inconclusive in late 1999 (most of the other 199 participants had already had several repeat surgeries and brain radiation treatments unlike me) 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 when another recurrence was documented on MRI I started on 200mg daily Mifepristone, brand name Mifeprex again, in my own FDA approved investigational trial to current and my July 2005 head MRI compares well and my condition appears stable and unchanged in my most recent MRI in Nov 2014.

Its hard to find a doctor willing to prescribe progesterone receptor inhibitors like MIFEPREX Mifepristone off label for meningiomas, another old brand name is Corlux and now a new brand name Korlym for Cushing’s disease symptoms has been FDA approved as an orphan drug. BTW Dr. Harvey Cushing was the great neurosurgeon who named meningiomas for any 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 have progesterone receptors, like acoustic neuromas and vestibular schwannoma which also seem to have a much higher incidence in females than in male bt patients. I am also concerned that women, especially young girls, have a 50% higher risk of abnormal cells or tumors from the same "lifetime total low dose man-made" radiation exposures as REFERENCE MAN, but the EPA doesn't mention it much. There ought to be REFERENCE WOMAN and REFERENCE CHILD radiation rate scales as well. My favorite links for new readers to brain tumor info and clinical trial information are Al Musella's site www.virtualtrials.com and the American Brain Tumor Association at www.abta.org

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

Mifepristone blocks 10 types of cancer cells in laboratory

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

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

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? &;>)

ABTA.org about meningiomas

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

Compassionate use of mifepristone

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