Thursday, February 23, 2012

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 and the American Brain Tumor Association at

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

Here is the link to 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.

Saturday, February 11, 2012

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.

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

GBYAY Anne McGinnis Breen