Tuesday, January 13, 2009

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

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.

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.

Sunday, January 4, 2009


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
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). ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------


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!

Saturday, January 3, 2009

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

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.

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

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