tag:blogger.com,1999:blog-24955247914589513782024-02-08T01:56:23.872-08:00Anne McGinnis Breen's Brain Tumor BlogFor my own list of 28 questions to ask about bt treatments please scroll down to Jan 2009. Meningiomas are now 34% of new primary brain tumors, more than GBMs and strike twice as many women as men, yet no standard chemo exists. I take 200mg daily Mifepristone in my own FDA clinical trial (same as RU-486, Mifeprex or Corlux), since Feb 05. I need your help advocating for HR1055 to change Medicare Part D Drug Parity law for off label drug use.
Please contact me at anne91547@aol.comAnne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-2495524791458951378.post-22222526878583434932019-03-10T16:16:00.000-07:002019-03-10T16:16:28.187-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
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My Update for March 10, 2019</div>
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Dear Readers and Followers,</div>
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Just a brief dated note to let you all know I am still alive and doing well. I have regular MRI check ups every six months for head, chest and abdomen that have all remained stable with no significant changes. I stopped taking the Mifeprex in May 2015 after ten years of continuous use. I do have some daily digestive issues with diarrhea, Irritable Bowel Syndrome and a spastic colon that are inconvenient and quite annoying. However, I do manage to Keep on Keepin ON! KOKO! . </div>
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GBYAY = God Bless You and Yours</div>
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from Anne McGinnis Breen</div>
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Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-64478681865469120322017-03-12T16:40:00.001-07:002017-03-12T16:40:21.387-07:00My Update for 03/12/2017<div dir="ltr" style="text-align: left;" trbidi="on">
To my loyal blog readers and followers,<br />
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THANK YOU ! I just noticed some of my published blog posts here are still being passed on and viewed by readers around the world while I have been away from my computer especially in the USA. There were about 500 individual post views last month and 53,771 post views in this blog history since 2009, including over 5,000 post views of my list of 28 questions to ask your medical team about primary brain tumor treatments and clinical trial options..<br />
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I have not been writing new posts for my blog since I had to quit smoking after the squamous cell carcinoma lung cancer diagnosis and surgical treatment on September 5, 2014. Immediately post op it was too hard for me to sit here at my computer without smoking... I had to break away from my old habits and form more productive new ones. Even so, I'm more of a lazy couch potato than ever before and I ought to get outside more in the yard to garden and more often to walk around the block.<br />
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I still can not believe how old I am... almost 70, and we have not had a woman US President yet! My most amazing news... Thanks to my daughter, her same sex female spouse and modern reproductive medicine.. I have two fantastic little granddaughters, half sisters, who are both adorable and marvelous playmates! <br />
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Ta ta for now my dear readers. Spring is on the way! GBYAY Anne</div>
Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-71927256293678718422015-06-26T00:48:00.002-07:002015-06-26T00:48:51.733-07:00Mifepristone. Mifeprex, Corlux, Korlym, progesterone inhibitors<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="background-color: transparent;">Mifepristone: An Overview<br /> <br /> Mifepristone (RU-486) was the first antiprogesterine to be developed for clinical use</span></div>
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<span style="background-color: transparent;"> Here are two of the most recent reports I found <br /> Efficacy of the Progesterone Receptor Antagonist Mifepristone for Palliative Therapy of Patients with a Variety of Advanced Cancer Types <br /> JEROME H. CHECK, EBONY DIX, RACHAEL COHEN, DIANE CHECK and CARRIE WILSON<br /> + Author Affiliations<br /> The University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School at Camden, Cooper Hospital/University Medical Center, Department of Obstetrics and Gynecology, Division of Reproductive Endocrinology and Infertility, Camden, New Jersey, U.S.A. <br /> Correspondence to: Jerome H. Check, MD, Ph.D., 7447 Old York Road, Melrose Park, PA 19027, U.S.A. Tel: +1 2156354156, Fax: +1 2156352304, e-mail: <a href="mailto:laurie@ccivf.com" target="_blank">laurie@ccivf.com</a> </span></div>
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<span style="background-color: transparent;">Abstract Background: Mifepristone has been demonstrated to improve longevity and quality of life in mice with spontaneous murine cancer without progesterone receptors and in human colon cancer. The present study evaluated the palliative effect of mifepristone in a variety of different types of human cancer. </span></div>
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<span style="background-color: transparent;">Patients and Methods: Mifepristone was given at 200 mg daily orally with permission from the Food and Drug Administration to people with widely metastatic human cancer no longer responsive to other chemotherapy regimens. </span></div>
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<span style="background-color: transparent;">Results: Improvement in pain and energy and/or length of life was found in thymic epithelial cell carcinoma, transitional cell carcinoma of the renal pelvis, leiomyosarcoma, pancreatic carcinoma, malignant fibrous histiocytoma and another case of adenocarcinoma of the colon. </span></div>
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<span style="background-color: transparent;">Conclusion: Our data demonstrate a palliative role for the use of mifepristone in cancer therapy. Progesterone receptor antagonists(inhibitors) should be given a therapeutic trial in larger controlled studies of various malignancies in humans. <br /> <br /> Key words: Metastatic human cancer palliation progesterone receptor antagonist tumor microenvironment mifepristone<br /> --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------<br /> Antiprogestin mifepristone inhibits the growth of cancer cells of reproductive and non-reproductive origin regardless of progesterone receptor expression<br /> Chelsea R Tieszen , Alicia A Goyeneche , BreeAnn N Brandhagen , Casey T Ortbahn and Carlos M Telleria <br /> Division of Basic Biomedical Sciences, Sanford School of Medicine of The University of South Dakota, 414 East Clark Street, Vermillion, SD, USA<br /> author email corresponding author email<br /> BMC Cancer 2011, 11:207doi:10.1186/1471-2407-11-207<br /> The electronic version of this article is the complete one and can be found online at: <a href="http://www.biomedcentral.com/1471-2407/11/207" target="_blank">http://www.biomedcentral.com/1471-2407/11/207</a><br /> </span>. It is not only a progesterone inhibitor, but also acts as a glucocorticoid inhibitor The fundamental importance of progesterone for human conception and throughout pregnancy has meant that mifepristone has been used for emergency contraception :\"the morning after" and as part of a safe medical abortion in the first and second trimester of pregnancy. </div>
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<span style="background-color: transparent;">It has also been used as part of the therapy to manage fetal death in utero in the third trimester of pregnancy. There are many other uses based on its mechanism of action blocking cortisol and reducing the bleeding associated with uterine fibroids and shrinking them. </span></div>
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<span style="background-color: transparent;">According to medical pathologists meningioma cells look the same under a medical microscope as uterine fibroid cells, in a subset of meningioma patients in NCI SWOG Phase 1 and Phase 2 it worked the same way on uterine fibroids with no serious risks of neurological injury from brain surgery and/or brain radiation. It had previously been tested on aggressive recurrent and multiple meningiomas after patients had exhausted both standard treatments and other experimental chemo drug therapies that may cause serious complications, late effects of radiation and death.<br /> <br /> Key words: Cushing's syndrome, meningioma, pregnancy, progesterone, progestogen, RU486, therapeutic abortion<br /> <br /> Introduction <br /> Most health professionals will be familiar with the antioestrogens, clomiphene citrate and tamoxifen for breast cancer. These drugs have been used for years for conditions as diverse as infertility and breast cancer respectively. It was not until 1983 that a drug with antiprogestogenic activity was developed. Mifepristone was the first drug to compete and inhibit progesterone at its receptor, just like Tamoxifin the designer darling breast cancer drug competes with the estrogen .<br /> <br /> Pharmacology <br /> The progesterone receptor is one of several proteins <strike>synthesised</strike> by the action of oestradiol on the endometrium. This receptor is a dimer of two distinct proteins and binds progesterone which is a planar steroid. By contrast, mifepristone is a non-planar <strike>molecule</strike>. This bent, rigid, molecular structure seems important for anti steroid compounds. <br /> <br /> Mifepristone binds to the progesterone receptor five times more avidly than progesterone. It also binds with the glucocorticoid receptor three times more strongly than dexamethasone. By contrast, mifepristone binds to the androgen receptor with only one quarter of the affinity of testosterone and has essentially no binding to the mineralocorticoid receptor or oestradiol receptors. <br /> Approximately 85% of mifepristone is absorbed after oral administration. It has a long elimination half-life.<br /> As mifepristone has antiprogestogenic activity, it has been studied in situations where its action may alter the course of conditions related to excess cortisol like stress related depression.<br /> <br /> Meningioma<br /> Meningioma is a generally benign tumor of the central nervous system. 80% of these benign tumors contain progesterone receptors. Unlike most breast cancer, meningiomas are commonly strongly progesterone receptor positive, only the more aggressive malignant ones 10% are oestrogen receptor positive. Mifepristone inhibits growth of meningioma cells in culture and reduces the size of human meningioma implanted into nude mice. <br /> Patients with unresectable meningioma have been treated with oral mifepristone 200 mg daily for a median duration of therapy of 35 months (range 2–157 months). Several meningioma patients including myself and Doris Laird who testified in US Congress that it saved her life have safely and successfully taken it for more than 10 years. In one series there were 19 women and 9 men with persistent or recurrent unresectable meningioma who already had serious side effects from multiple surgeries and radiation. Eight patients responded to the therapy, as shown by reduced tumour size on computerized tomography or magnetic resonance imaging and improvement in visual field examination. Endometrial hyperplasia (or benign endometrial changes as documented in Rochester study of fibroid therapy 2007) did occur in three premenopausal women, but did not prove dose limiting especially in view of its long-term safety used for patients with Cushing's syndrome.<br /> <br /> Uterine fibroids <br /> Uterine fibroids, or leiomyomata, are the most common tumours in women. The fibroids and their nourishing blood vessels are rich in progesterone receptors. Several trials have shown that mifepristone can reduce the size of uterine fibroids by 50% and effectively reduce menstrual blood loss. A recent randomised double-blind clinical trial of 10 mg mifepristone or placebo found that mifepristone reduced uterine and fibroid size and reduced menstrual blood loss. It also increased haemoglobin concentration so the female patients were no longer anemic and many did not need a hysterectomy as long as they took the drug. <br /> <br /> Intrauterine fetal death <br /> Progesterone is critical for establishing and maintaining pregnancy. The first WHO study in Australia used mifepristone to manage fetal death in late pregnancy. In these cases, the baby has died, but the placenta has not and it continues to synthesise progesterone for some weeks. This prevents labour and continues the pregnancy in very difficult emotional circumstances for any woman carrying a dead baby. For women with an unexplained fetal death in utero, and who have an unripe cervix, mifepristone typically induces delivery within 72 hours which can also eliminate the medical neccessity of a c section. I think most women would prefer not to be cut open. <br /> <br /> Contraception <br /> Mifepristone has been used as an emergency contraceptive. In randomised controlled studies, it is as effective as other regimens, such as those using levonorgestrel and saver than some of the new added hormone bith control pills. In WHO studies of emergency contraception within seven days of unprotected intercourse, mifepristone was effective at doses of 600 mg, 50 mg and even does as low as 10 mg. This is important in low income countries with limited health care, few pharmaceutical resources and frequent early childhood death from malnutrition or human diseases like malaria. <br /> <br /> Cushing's syndrome <br /> As mifepristone is a glucocorticoid receptor antagonist, it has been studied in Cushing's syndrome. The first patient to be treated received mifepristone doses of up to 1500 mg daily for nine weeks. No adverse effects were observed. Some patients with Cushing's syndrome have been successfully treated with mifepristone for up to 10 years. <br /> <br /> Recently, (SPRMs) selective progesterone receptor modulators have been developed. These drugs are the 'bio chemical successors' to mifepristone. They show partial agonist and partial antagonist effects on various progesterone target tissues. For example, Asoprisnil has antiproliferative effects on the endometrium and can decrease the size and growth of uterine fibroids by reducing uterine artery blood flow. Corlux is another brand name of Mifepristone that is being used to treat major depression. It could help brain tumor survivors in two ways, those suffering from clinical depression post op which is quite common after the medical crisis is over and those at risk of gradual progression of residual tumor if every single bad cell was not surgically removed before they have to take the risks of completely zapping it with radiation.. <br /> <br /> Conclusion <br /> In the 25 years since its safe effective use was first reported, mifepristone has been registered and widely used for safe medical abortion in many countries. These include the United Kingdom (since 1991), Sweden (1992), USA (2000) New Zealand (2001) and Australia (2006) Many other documented evidence based lifesaving uses are still off label uses. There has been so much political furor over its abortion and morning after pill use in the US that it is not easily available to other types of qualified medical specialists in this country, like endocrinologists, gynocologists and oncology doctors. They do not use it for medically beneficial uses in women's health care like meningiomas or fibroids simply because it is extra FDA paperwork hassle and the cost is not covered by insurance. The American health insurance accountants and hospital lobbyists that follow the bucks are missing the boat here, In fact for private health insurers, Medicare and Medicaid it would be much cheaper to provide this drug than approximately 20 thousand brain surgeries a year and millions of hysterectomies 1/3 of all women eventually need to have for uterine fibroids. It could reduce US hospital costs immensely for all of us. <br /> <br /> I used a 2009 Australian medical report on Mifepristone as a template for some additional text in my own words I added above. According to recent 2010-2011 research I think it blocks further tumor growth and shrink thousands of low grade pituitary adenomas, acoustic neuromas and vestibular shwannomas and some subset of ovarian cancers. Some cancer patients, male and female would certainly benefit from this old generic drug in terms of improving their overall quality of life and longterm survival rate as Doris Laird, I and 40 others have done thanks to the Feminist Majority Foundation and the FDA . To fight rising cancer rates on a global scale, it could be produced cost effectively and FDA approved sooner than any other new drugs. <br /> <br /> Again here are two of the most recent reports I found, there are many in PUB MED and I list them in other posts<br /> Efficacy of the Progesterone Receptor Antagonist Mifepristone for Palliative Therapy of Patients with a Variety of Advanced Cancer Types <br /> JEROME H. CHECK, EBONY DIX, RACHAEL COHEN, DIANE CHECK and CARRIE WILSON<br /> + Author Affiliations<br /> The University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School at Camden, Cooper Hospital/University Medical Center, Department of Obstetrics and Gynecology, Division of Reproductive Endocrinology and Infertility, Camden, New Jersey, U.S.A. <br /> Correspondence to: Jerome H. Check, MD, Ph.D., 7447 Old York Road, Melrose Park, PA 19027, U.S.A. Tel: +1 2156354156, Fax: +1 2156352304, e-mail: <a href="mailto:laurie@ccivf.com" target="_blank">laurie@ccivf.com</a><br /> </span></div>
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<span style="background-color: transparent;">Abstract Background: Mifepristone has been demonstrated to improve longevity and quality of life in mice with spontaneous murine cancer without progesterone receptors and in human colon cancer. The present study evaluated the palliative effect of mifepristone in a variety of different types of human cancer. </span></div>
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<span style="background-color: transparent;">Patients and Methods: Mifepristone was given at 200 mg daily orally with permission from the Food and Drug Administration to people with widely metastatic human cancer no longer responsive to other chemotherapy regimens. </span></div>
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<span style="background-color: transparent;">Results: Improvement in pain and energy and/or length of life was found in thymic epithelial cell carcinoma, transitional cell carcinoma of the renal pelvis, leiomyosarcoma, pancreatic carcinoma, malignant fibrous histiocytoma and another case of adenocarcinoma of the colon. </span></div>
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<span style="background-color: transparent;">Conclusion: Our data demonstrate a palliative role for the use of mifepristone in cancer therapy. Progesterone receptor antagonists(inhibitors) should be given a therapeutic trial in larger controlled studies of various malignancies in humans. <br /> <br /> Key words: Metastatic human cancer palliation progesterone receptor antagonist tumor microenvironment mifepristone<br /> --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------<br /> Antiprogestin mifepristone inhibits the growth of cancer cells of reproductive and non-reproductive origin regardless of progesterone receptor expression<br /> Chelsea R Tieszen , Alicia A Goyeneche , BreeAnn N Brandhagen , Casey T Ortbahn and Carlos M Telleria <br /> Division of Basic Biomedical Sciences, Sanford School of Medicine of The University of South Dakota, 414 East Clark Street, Vermillion, SD, USA<br /> author email corresponding author email<br /> BMC Cancer 2011, 11:207doi:10.1186/1471-2407-11-207<br /> The electronic version of this article is the complete one and can be found online at: <a href="http://www.biomedcentral.com/1471-2407/11/207" target="_blank">http://www.biomedcentral.com/1471-2407/11/207</a><br /> </span></div>
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<a href="https://mail.aol.com/IM/?sn=anne91547&locale=en_US&pd=0" style="color: black; font-size-adjust: none; font-stretch: normal; font: lighter 10px/normal Verdana, Arial;" target="_blank"><img align="absmiddle" border="0" src="https://api.aim.net/presence/icon?k=sr1DFCvn2e83VRmK&t=anne91547" /></a> GBYAY Anne McGinnis Breen <br /> See my ponytail bouncing and my smiley face winking at you? &;>) </div>
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Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-33213011087113417552015-06-26T00:24:00.000-07:002015-06-26T00:24:11.367-07:002014-2015 Facts about Meningioma Survival<div dir="ltr" style="text-align: left;" trbidi="on">
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Meningioma</h4>
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Meningiomas have the highest number of estimated new cases of all primary brain tumors in the US, with 24,980 cases in 2014 and 25,190 in 2015. I think California has 6 or 7,000 per yr and Arizona has about 900 per yr. </div>
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Meningiomas are the most frequently reported tumors in the US, accounting for 36.1% of brain tumors overall (Figure <a class="xref-fig" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#F8" id="xref-fig-8-1" target="_blank">8a</a>). </div>
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Non-malignant meningiomas with behavior codes /0 (benign) or /1 (uncertain) account for 98.5% of meningiomas reported to CBTRUS (Table <a class="xref-table" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#T11" id="xref-table-wrap-11-4" target="_blank">9</a>). </div>
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Meningiomas are most common in older adults and least common in children (Table <a class="xref-table" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#T12" id="xref-table-wrap-12-2" target="_blank">10</a>). </div>
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Incidence of meningiomas increases with age, with a dramatic increase after age 65. Even among the population aged 85 years and older, these rates continue to be high (Table <a class="xref-table" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#T12" id="xref-table-wrap-12-3" target="_blank">10</a>). </div>
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Non-malignant meningiomas are 2.3 times more common in females as compared to males (Figure <a class="xref-fig" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#F12" id="xref-fig-12-2" target="_blank">12</a>). </div>
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Incidence of meningioma is significantly higher in blacks than in whites (Figure <a class="xref-fig" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#F13" id="xref-fig-13-3" target="_blank">13</a>). </div>
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Ten-year relative survival for malignant meningioma is 57.2% (Table <a class="xref-table" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#T24" id="xref-table-wrap-24-2" target="_blank">22</a>). </div>
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Age had a large effect on relative survival after diagnosis with malignant meningioma: 10-year survival was 84.4% for ages 24–44, and 33.5% for 75+ (Table <a class="xref-table" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#T25" id="xref-table-wrap-25-3" target="_blank">23</a>). </div>
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Incidence of meningioma varies significantly among regions of the United States (Figure <a class="xref-fig" href="http://neuro-oncology.oxfordjournals.org/content/16/suppl_4/iv1.full#F33" id="xref-fig-33-1" target="_blank">21</a>). The highest incidence is found in the Middle Atlantic, while the lowest is in the West North Central region (I think California has 6 or 7,000 per yr and Arizona has about 950 per yr).</div>
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NY and NJ have the most m cases on the east coast. There is a CBTRUS Table for each state</div>
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My notes AMB </div>
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They have not yet published any actual 3, 5 or 10 year survival rates for low grade meningioma. It was about 67% survival at 5 yr which is worse than the survival rate for breast cancer. And a meningioma diagnosis is linked to an increased risk for breast cancer. </div>
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<span style="font-size: small;">CBTRUS Statistical Report: Primary Brain and Central Nervous System Tumors Diagnosed in the United States in 2007–2011</span></h1>
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<span class="table-label">From Table 18.</span> <br />
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Estimated Number of Cases<sup><span style="font-size: x-small;">a,b</span></sup> of Brain and Central Nervous System Tumors Overall and by Behavior by Major Histology Groupings and Histology, 2014, 2015 </div>
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<a href="https://mail.aol.com/IM/?sn=anne91547&locale=en_US&pd=0" style="color: black; font-size-adjust: none; font-stretch: normal; font: lighter 10px/normal Verdana, Arial;" target="_blank"><img align="absmiddle" border="0" src="https://api.aim.net/presence/icon?k=sr1DFCvn2e83VRmK&t=anne91547" /></a> GBYAY Anne McGinnis Breen </div>
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1st bt surgery 1986, recurrence 1992, 2nd bt surgery2001, </div>
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NCI 1992 SWOG 9005 Phase 3 clinical trial FDA approved safe for longterm use<br />
Mifeprex for meningioma 1996 to 1999 and again Feb 2005 to present day<br />
Squamous cell carcinoma, half of upper left lung removed, Sept 2014 </div>
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See my ponytail bouncing and my smiley face winking at you? &;>) </div>
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Please scroll all the way down for my list of 28 questions (more like 150 items) to ask your medical team about brain tumor treatments plus facts about my successful individual NCI clinical trial experience with an alternative drug therapy RU486 Mifepristone generic (Brand names: MIFEPREX, CORLUX, KORLYM) Progesterone inhibitor for recurrent meningioma, my thoughts about depression and recurrence and my blog arguments about obsolete REFERENCE MAN 1990s EPA radiation risk calculations for women and children found at <a href="http://gbyay.blogspot.com/" target="_blank">http://gbyay.blogspot.com</a> <br />
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Keep your faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!</div>
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Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-85897767641730122262015-05-16T02:11:00.000-07:002015-05-16T02:11:01.931-07:00Corlux (same as Mifeprex) for Cushing syndrome 2007<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="http://www.cushings-help.com/endo_news2007.htm">Endo and Health News from 2007 / Cushing's Help and Support</a><br />
...tumor on the pituitary gland at the base of the brain... This Topic on the Message Boards Washington Post August 14, 2007 CORLUX for the treatment of Cushing's Syndrome, orphan drug designation Corcept is still determining its...<br />
http://www.cushings-help.com/endo_news2007.htm - Dec 20, 2008 - Relevance: 100.00%<br />
<a href="http://www.cushings-help.com/current_trials.htm">Current Clinical Trials / Cushing's Help and Support</a><br />
...Drug: C2L-OCT-01 PR, 10 or 20 mg; Drug: C2L-OCT-01 PR, 20 mg 53 Recruiting A Study of the Efficacy and Safety of CORLUX in the Treatment of Endogenous Cushing's Syndrome Condition: Cushing's Syndrome Intervention: Drug:...<br />
http://www.cushings-help.com/current_trials.htm - Dec 20, 2008 - Relevance: 76.00%</div>
Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-87510211441474259612015-05-16T02:07:00.004-07:002015-05-16T02:07:52.298-07:00My old treatment update draft as of Jan 2009<div dir="ltr" style="text-align: left;" trbidi="on">
I have been taking <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Mifepristone</span> again a second time in an independent <span class="blsp-spelling-error" id="SPELLING_ERROR_1">investigational</span> study approved by the FDA to control my recurrent <span class="blsp-spelling-error" id="SPELLING_ERROR_2">meningioma</span> since Feb 2005 and according to my documented six month <span class="blsp-spelling-error" id="SPELLING_ERROR_3">MRIs</span> at the University of Arizona MRI Imaging Center my low grade 2 brain tumor is still stable, no change in Jan 2009.<br />
It took a full year from March 04 to Feb 05 to get all the legal paperwork approved by the FDA, the Institutional Review board at the U of AZ and the brand name product <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Mifepex</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">distributed</span> by <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Danco</span> Inc in NYC which has increased the cost of my off label use of the medicine from $5 a day to $15 a day in the past three years.<br />
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David Dunlap, who I met online in the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">JHU</span> m email list many years ago, generously sent me his dear Linda Dunlap's extra month of daily doses of <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Mifeprex</span> instead of throwing it away, after she passed away in August of 2008. she had been taking it successfully to control her <span class="blsp-spelling-error" id="SPELLING_ERROR_9">meningioma</span> regrowth without any serious <span class="blsp-spelling-error" id="SPELLING_ERROR_10">longterm</span> side effects since 1987. She was truly a great lady who helped many other people during her lifetime and is <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">sorely</span> missed by her many dear friends in California and those who read her website.<br />
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In 2007 the FDA approved <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Mifepristone</span> in an orphan drug brand name <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Corlux</span> for <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Cushing</span> disease symptoms. (caused by a pituitary <span class="blsp-spelling-error" id="SPELLING_ERROR_15">adenoma</span> or compression of the pituitary gland which is centrally located in the brain by an adjacent low grade tumor of any kind)<br />
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Please look up <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Cushing</span> disease symptoms to compare to your own current symptoms which was named after Dr. Harvey <span class="blsp-spelling-error" id="SPELLING_ERROR_17">Cushing</span>, the same great neurosurgeon who discovered and named <span class="blsp-spelling-error" id="SPELLING_ERROR_18">meningioma</span> brain tumors many years ago.</div>
Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-4237134152905853592015-05-16T01:24:00.002-07:002015-05-16T01:24:55.832-07:00I highly recommend the ABTA publications and support services to all brain tumor patients and their loved ones.<div dir="ltr" style="text-align: left;" trbidi="on"><br />
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To my dear bt family online and all my Meningimates, <br />
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I had a good time in Florida at the ABTA conference in Tampa and just handed out the rest of the free ABTA literature (BT Primer handbook and BT Medical Dictionary) from the American Brain Tumor Association I picked up in Florida to the new members of our local monthly BT support group in Tucson at UMC/AZCC, now a Banner Hospital where I had my successful left lung tumor removal surgery for squamous cell carcinoma lung cancer last fall, September, 2014. (It was found early and there was no lymph node involvement.)<br />
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I think these ABTA publications are a very informative gift for many of our fine doctors who may not have had a chance to read them either. Topics include a dozen specific brain tumor types and various surgery, radiation and chemo treatment options, comprehensive brain tumor support services, fund raising events and volunteer opportunities everyone should be made aware of as soon as possible. For the past twenty years the ABTA.org in Chicago and the National Brain Tumor Society on both the east and west coast have been my GO TO non profit organizations for individual support, regional events and educational resources for the complex needs and advocacy issues of all brain tumor patients and their caregivers. <br />
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For example, the ABTA Meningioma brochure lists eight less invasive drug treatment options (not standard surgery and radiation therapy) that have been used with some success and/or are being further explored and investigated in recent years for meningiomas. Some of you might want to ask your doctors about these clinical trial and investigational drugs. Hydroxyurea, and progesterone receptor inhibitors like the Mifepristone I take, Somatostatin analogs, Targeted molecular agents, Epidermal growth factor inhibitors (EGFR), Platelet derived growth factor receptors (PDGFR), Vascular endothelial growth factor inhibitors (VEGF), and Immunotherapy/the use of biological agents to stimulate your immune system. <br />
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For more information and printed materials contact the ABTA Careline at 1-800-886-2282 or visit their website at www.abta.org<br />
Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-48391854139829540282013-07-05T20:10:00.002-07:002013-07-05T20:10:36.682-07:00Lost and Found: What brain injury survivors want you to know:<div dir="ltr" style="text-align: left;" trbidi="on"><br />
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One of our dear Meningimates, Karen Armentani, shared this link from Brainline.org last summer and it says exactly what I still have to deal with every day socially and emotionally since two major craniotomies, first in 1986 and then again in 2000. Please share this handout with your family and friends.<br />
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Lost & Found: What Brain Injury Survivors Want You to Know <br />
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I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.<br />
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My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.<br />
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Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.<br />
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I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.<br />
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If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!<br />
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If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.<br />
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Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.<br />
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Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.<br />
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Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.<br />
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Please have patience with my memory. Know that not remembering does not mean that I don’t care.<br />
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Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.<br />
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If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.<br />
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If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)<br />
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You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.<br />
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If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)<br />
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If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.<br />
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We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.<br />
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Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.<br />
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Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.<br />
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Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission. http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html<br />
Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-32479893924942908602013-06-17T18:19:00.001-07:002013-06-19T16:26:55.334-07:00Recovery from mild brain injury is a process<div dir="ltr" style="text-align: left;" trbidi="on"><br />
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My dear readers,<br />
This essay may help you and your loved ones learn to cope with any post treatment effects of brain surgery or brain radiation. I copied and adapted my own remix from the brain injury websites I listed below.<br />
A sudden medical crisis, like a stroke or a heart attack, is a brain attack. Any serious brain injury, gun shot wound to the head or brain tumor diagnosis can be like a stroke and requires an amazing ability to embrace extreme contradictions both in the minds of those undergoing treatment and those trying to understand it from afar. In each case and with every different diagnosis, there is human suffering, there are psychic and emotional scars that will be felt and remain long after any medical intervention is over. Sometimes they, the patients will die and sometimes they will have permanent, mild or severe brain injuries, or a variety of functional mental ability losses that gradually progress over time. Once the immediate medical crisis is over, some satisfactions, some newborn social bonds, and some liberation from tired old routines are also often quite profound and meaningful. Change is the only constant and recovery is a process with many ups and downs.<br />
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One major gap I see between accounts of brain recovery and actual experiences are the focus on the percentage of people who live or die, like from gun shots or car accidents, not focusing on those who are permanently harmed and otherwise devastated by their remaining chronic condition and their constant need for assistance and on going medical care, often the patient is no longer the epicenter of the social disaster that has been created, as long term financial burdens and emotional effects spread to the other family members and their significant others. Surrounding them, often living in the same neighborhood, is a periphery of friends and co workers who are largely undamaged, but can also be profoundly disrupted by the suffering of brain injury patients and their caregivers no matter what caused the brain injury. It is the huge disruptive force of these powerful emotional and financial issues that matter here to me today. <br />
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I am amazed by the remarkable online communication abilities of human communities today to topple old orders and open up new possibilities for the future. This broader effect and its ripples are the same as what a natural disaster does to any society. In the moment of disaster, the old social order no longer exists and people improvise their own rescues, find new shelters, and form new communities. Thereafter, a struggle takes place in the entire social structure over whether the old order with all its shortcomings and financial injustices will be reinstalled or a new one, perhaps hopefully a more just and open one for all, like universal background checks for gun sales or perhaps a universal health care safety net system, will arise.<br />
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For example, as a person recovers from their meningioma brain tumor treatment, their brain cells attempt to re-establish the precise balance needed to ensure effective information processing and physical mobility, but this may mean some compensations or adjustments to their neural cell’s original alignments. Neural cells must compensate or adjust to the prior tumor compression, decompression and injury. Some times after large low grade brain tumor removal treatments any task or skill may take longer and memory may not be as complete until all the neural networks realign themselves with time, practice, patience and constant repetition. Mild aphasia or "word finding" problems like my former US Rep Gabby Giffords aphasia might be a social problem too. Neurogenesis is the birth of new adult brain cells and it continues throughout our adult life.<br />
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For example, when a person sprains or fractures an ankle, professionals recommend cold/heat treatments, rest and supports (i.e., cast, brace) and specific exercises to help the ankle adjust to the injury and recover maximal function. Depending on the severity of the ankle injury (i.e., sprain, fracture) and what is required after recovery (i.e., long distance running, ballet), the injury to the ankle can disrupt a person’s life.<br />
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Obviously, a human brain is much more complicated than an ankle. Yet, similarly, rest, supports (i.e., compensations, modifications) and “exercises” (i.e., cognitive therapies, educational tools and brain retraining) for the brain may be recommended to rehabilitate and restore useful physical function and memory skills. Depending on the severity of the injury and what the person needs to do and wants to do (i.e., care for a family, return to work or school, manage a large company), a mild brain injury can disrupt a person’s lifestyle for a short period of time or even longer.<br />
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Diagnosis of Mild Brain Injury<br />
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Due to the diffuse and subtle nature of mild brain injury, it is common for typical neuroimaging (CT scan or MRI’s) to show little or no evidence of injury. Believe you me, The damage to the brain is a real injury. One limitation of these brain imaging technologies is they often cannot detect mild brain injury or mild stroke like symptoms. Mild brain injury can often damage the "white matter" of the brain. "White matter" consists of the axons of neurons (connections) in the brain. This injury is much harder to capture or visualize using common types of brain imaging.<br />
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There are newer, more sophisticated imaging technologies that show promise in more effectively capturing the damage that occurs in a mild brain injury. However these imaging technologies are currently much more expensive, and are not as readily available. Some of the newer imaging techniques include:<br />
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Positron Emission Tomography (PET)<br />
Single Photon Emission Computerized Tomography (SPECT)<br />
Functional Magnetic Resonance Imaging (fMRI)<br />
Diffuse Tensor Imaging (DTI) <br />
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Neuropsychological assessment is typically used to assess the functional impact of a mild brain injury or brain tumor. It may also be done while the meningioma patient is on "watch and wait" as part of an active surveillance monitoring plan. This holistic assessment is normally done when some type of brain dysfunction is suspected. A mild brain injury is often initially diagnosed by evaluation of the physical symptoms a person reports after sustaining a brain injury or after treatment. <br />
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A neuropsychological assessment is comprised of a wide range of tests that objectively measure specific brain functions. Testing includes a variety of different methods for evaluating areas like attention span, orientation, memory, concentration, language (receptive and expressive), new learning, mathematical reasoning, spatial perception, abstract and organizational thinking, problem solving, social judgment, motor abilities, sensory awareness and emotional characteristics and general psychological adjustment. <br />
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The neuropsychological evaluation can be used as a good starting point for a plan of rehabilitation. It can assist brain injury professionals in identifying specific cognitive areas that have been damaged, as well as those areas still intact. You can read more about neuropsychological evaluations and brain injury rehabilitation from the American Psychological Association. Many health insurance plans do not adequately cover additional brain repairing therapies, especially if the person looks "fine". <br />
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What can I do if I have a mild brain injury?<br />
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Understanding the changes that may have occurred from a brain injury is an important part of the recovery process. This makes public education and awareness crucial for both the person with a brain injury as well as their family and friends. The person with an injury and others need to understand that a “mild” brain injury can result in changes in thinking processes and memory that can affect the person’s ability to return to their former life. While a person can “look fine,” their brain injury is an invisible injury. <br />
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Research has shown that education and information about possible consequences and side effects can be helpful to the person with an injury and their family members. Some basic symptoms for family and friends to be aware of include:<br />
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Early Symptoms:<br />
•Headache <br />
•Dizziness or vertigo <br />
•Lack of awareness of surroundings <br />
•Nausea with or without memory dysfunction <br />
•Vomiting <br />
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Later Symptoms:<br />
•Persistent low grade headache <br />
•Lightheadedness <br />
•Poor attention and concentration <br />
•Excessiveness or obsessiveness and easy fatigue <br />
•Intolerance of bright light or difficulty focusing vision <br />
•Intolerance of loud noises <br />
•Ringing in the ears <br />
•Anxiety and depressed mood <br />
•Irritability and low frustration tolerance <br />
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If you suspect you or your loved one may have a mild brain injury or personality changes, please contact a brain injury professional to help with the diagnosis and inital treatment plan, no matter how long ago the injury occurred. Also contact the Brain Injury Association in your state. State Brain Injury Associations and national brain tumor organizations will have information to share and can connect you with support groups, programs and professionals who understand the injury.<br />
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Mild Brain Injury Issues<br />
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Some important information to share, from families and people who have sustained a mild brain injury:<br />
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The recovery from a mild injury is not always quick.<br />
For mild brain injury, the issues are the same as moderate to severe brain injury. While there are general guidelines for recovery, there can be wide individual variations in the timetable for recovery. It can take several weeks, or several months for symptoms to fully resolve and to learn new coping techniques. It takes longer to break old habits and form more constructive new ones.<br />
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Recovery is often uneven. <br />
There will be “good days” and “bad days.” This is normal in recovering from a brain injury. An important thing to keep in mind: on the “good days”, people want to get as much done as they can. Often, this can lead to overdoing it, which can bring back symptoms that were previously gone. Even on the good days, it is important to give yourself more time to complete tasks, and to listen to your body. You cannot “tough out” a brain injury.<br />
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Create the best possible environment for recovery. <br />
Substances like caffeine, alcohol and nicotine can affect a person with a brain injury much more than they did before the injury. Be aware of the possible negative consequences of alcohol on recovery post injury especially if impulse control is an issue. It is recommended to abstain from alcohol consumption during the recovery period. One place you can read more about alcohol use and recovery from a brain injury is at the Ohio Valley Center for Brain Injury Prevention and Rehabilitation.<br />
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Give yourself or your loved ones more time to complete things. <br />
Issues like fatigue, attention and memory issues can cause delays in completing tasks that were more easily and accurately done before the injury. Allowing additional time to do things like laundry, menu planning, shopping, bill paying can help. Thinking out the steps in order needed to complete tasks and writing them down can be helpful too. Better planning ahead can decrease stress and anxiety for both the survivor and the caregiver.<br />
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Professional help is important. <br />
It is important to understand the effects of any brain injury. The injury itself can impair the ability of a person to accurately assess their abilities or personality changes. And once problems are identified, often a person with a mild brain injury struggles with figuring out effective strategies to compensate for problem areas. Working with a trained brain injury professional can help identify specific problem areas, and objective adults who can then help them implement effective strategies. You do not need to figure out brain injury and short term or long term memory losses all on your own. There are useful books and many resources available about different types of memory skills that impact who we are and who others think we are. <br />
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Support groups can be helpful. <br />
Brain injury, stoke or any illness like a brain tumor can be isolating. People say things like “you look fine,” with the implication that you should be fine. It is an invisible injury. Sometimes just talking with others who have had similar experiences can help a person with a brain injury understand they are not the only one dealing with these issues. Contact the Brain Injury Associations in your state and the four major US brain tumor organizations to find out about support groups or other resources that may be useful to you.<br />
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Mild Brain Injury, Stroke and Concussion<br />
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It is important to understand that a stroke, or a concussion is a physical injury to the brain that causes a disruption of normal functioning just like any other physical injury disrupts your normal functioning. For example, some ankle injuries (i.e., sprains and fractures) are more disruptive than others, just as some brain injuries are more disruptive than others. The better we understand any injury, the better our chances are for a speedier and healthier recovery. <br />
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There maybe some confusion as to the definitions of head injury, stroke and the definition of a mild traumatic brain injury (mTBI). Brain injury can be viewed along a continuum that incorporates concussion, mild brain injury, moderate brain injury and severe brain injury. Each type of brain injury varies depending upon: (1) whether the person was unconscious; (2) how long he/she was unconscious; (3) the length of their amnesia; (4) the resulting cognitive, behavioral and physical problems; and (5) the recovery process. <br />
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The definition for a concussion and a mTBI tend to overlap and brain surgery and brain radiation therapy can have mild and/or serious long term stroke-like effects too.<br />
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To further clarify, a concussion is defined as a trauma (i.e., a blow to the head or a serious whiplash) that induces an alteration in mental status (physical or cognitive abilities) that may or may not involve a loss of consciousness. Concussion as detailed by guidelines developed by the American Academy of Neurology (AAN) and the Brain Injury Association (BIA), commonly is divided into three different types.<br />
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Grade 1 Concussion<br />
•Person is confused but remains conscious <br />
•SIGNS: Temporarily confused, dazed, unable to think clearly, has trouble following directions <br />
•TIME: Symptoms clear within 15 minutes <br />
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Grade 2 Concussion<br />
•Person remains conscious, but develops amnesia <br />
•SIGNS: Similar to Grade 1 <br />
•TIME: Symptoms last more than 15 minutes <br />
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Grade 3 Concussion<br />
•Person loses consciousness <br />
•SIGNS: Noticeable disruption of brain function exhibited in physical, cognitive and behavioral ways. <br />
•TIME: Unconsciousness for seconds or minutes <br />
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If concussion, stroke and mTBI are seen as part of the brain injury continuum, with Grade 3 concussion and mTBI overlapping, one can get a better understanding of how these definitions compliment each other and enhance our understanding. The Brain Injury Association estimates that approximately 75% of all brain injuries fall in the “concussion-mTBI continuum.”<br />
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For the majority of people who sustain a mild stroke, a concussion or have brain surgery, a full recovery is possible with appropriate diagnosis and management, but side effects may also lead to additional head injuries or falls. The effects of repeated multiple head injuries can be cumulative over a lifetime. <br />
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For kids and parents the CDC has information available about concussion management from falls for elderly folks and for safe return to play guidelines for sports. Additionally, the Brain Injury Association supports legislation like "Zach’s Law," enacted in Washington State, that requires any school athlete to obtain medical clearance to safely return to play following a concussion. Information about this legislation is available from your state Brain Injury Association.<br />
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Additional Resources<br />
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CDC Concussion Booklet<br />
Road to Rehabilitation Series Part 3 - Concussion and Memory<br />
Road to Rehabilitation Series Part 8 - Concussion and Mild Brain Injury<br />
TBI Guide, an online book about brain injury and recovery written by a neuropsychologist.<br />
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There are several books available in the Brain Injury Association Marketplace:<br />
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Brain Injury Survival Kit<br />
In Search of Wings<br />
Remind Me Why I'm Here<br />
Brainlash: Maximize Your Recovery from Mild Brain Injury<br />
Brain on a String<br />
Shaken but not Stirred<br />
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My Sources: <br />
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Road to Rehabilitation Series, Part 8 - Concussion and Mild Brain Injury, Brain Injury Association of America, 2006.<br />
Brain Injury Medicine: Principles and Practice, Nathan D. Zasler, MD, Editor, Douglas I Katz, MD, Editor, Ross D. Zafonte, DO, Editor, 2007, Demos Medical Publishing.<br />
Mild Traumatic Brain Injury: A Therapy and Resource Manual Green, B, Singular Publishing, 1997 <br />
Textbook of Traumatic Brain Injury Jonathan M. Silver (Editor), Stuart C. Yudofsky (Editor), Thomas W. McAllister (Editor), 2004 American Psychiatric Press<br />
Horn, L.J. & Zasler, N. (1996). Medical Rehabilitation of Traumatic Brain Injury. Hanley & Belfus, Inc: Philadelphia, PA.<br />
Kay, T. Brain Injury Association of America. Mild traumatic brain injury, 1999.<br />
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GBYAY Anne McGinnis Breen <br />
See my ponytail bouncing and my smiley face winking at you? &;>) <br />
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Keep your faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-89734782135000736642013-06-17T16:31:00.002-07:002013-06-19T16:28:35.156-07:00Proptosis- bulging eyeball symptom of meningioma, etc in Grand Rounds presentation 2010 <div dir="ltr" style="text-align: left;" trbidi="on"><br />
</div>My Dear Meningimates around the world,<br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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http://www.teigrandround.com.sg/images/gallery/1273824062_20100415%20DavidLaw%20OCULO.pdf<br />
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GBYAY Anne McGinnis Breen Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-10038994928320385282012-04-06T01:04:00.000-07:002012-04-29T16:18:33.112-07:00Limit and Count the lifetime number of your CAT scans and dental xraysMy dear Meningimates and our beloved significant others,<br />
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YOU may remember my frequently shared anecdotal personal medical history about having multiple full mouth dental xrays by three different dentists as a child before I was 19 for regular pediatric dental care, for three years of braces and two broken front teeth in high school and for removal of all my wisdom teeth. Twenty years later in 1986 I was diagnosed with a large lower wing of the left temporal lobe 5 cm grade 2 meningioma primary brain tumor.<br />
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I believe am still alive, adjusted to my "new normal" and doing well because I frequently decided to postpone additional highly recommended brain radiation therapy early in my brain tumor journey several times in 1992, 2000, and 2004 and participated in a 1992 NCI SWOG 9005 clinical trial of a safe effective investigational study of an old generic drug Mifepristone instead . Please take this informative report to your medical doctor and limit your future cumulative radiation exposures from Cat scans by asking your doctor to please use MRI scans whenever possible.<br />
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Finally forty years later in 2012 you can believe what I suspected and told anyone who would listen to a brain tumor lady since 1992. LOL <br />
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Now please believe this recent report by Dr. Elizabeth Claus and a team of well known respected meningioma researchers. <br />
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http://thegazette.com/2012/04/05/study-frequent-dental-x-rays-linked-to-most-common-brain-tumor/<br />
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Today I believe a major risk factor for cancer is multiple Cat scans, please be careful to limit the life time number of CAT scans, especially for your children or if someone has epilepsy or serious head injury or any condition that is monitored by cat scans. Please see if you can switch to MRIs. <br />
http://www.huffingtonpost.com/leo-galland-md/radiation-risks_b_843282.html<br />
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GBYAY Anne McGinnis Breen <br />
See my ponytail bouncing and my smiley face winking at you? &;>) <br />
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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 originally composed in 1997 plus my personal meningioma alternative drug therapy RU486 Mifepristone and my blog comments about the obsolete 1990s EPA radiation risk calculations for women and children are found at http://gbyay.blogspot.com <br />
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Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-22827590800854429412012-03-29T02:51:00.000-07:002012-03-29T02:51:46.365-07:00Towards a Global Ethic in 1993 :an Initial Declaration by Dr Hans Kung and othersTowards a Global Ethic: An Initial Declaration is an interfaith community declaration, drafted initially by Dr. Hans Küng, in cooperation with the Council for a Parliament of the World's Religions staff and Trustees and experts. Drawing on many of the world's religious and spiritual traditions, the community declaration identifies four essential human affirmations as shared principles essential to a fair global ethic.<br />
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Commitment to a culture of non-violence and respect for life <br />
Commitment to a culture of solidarity and a just economic order <br />
Commitment to a culture of tolerance and a life of truthfulness <br />
Commitment to a culture of equal rights and partnership between men and women <br />
This Declaration was signed at the Parliament of the World's Religions gathering in 1993 by more than 200 leaders from 40+ different faith traditions and spiritual communities. Since 1993 it has been signed by thousands more leaders and individuals around the world. As such, it offers common ground for people to agree and to cooperate for the good of all humankind and the sustainability of our planet. <br />
Because of unequal geographic population growth and international economic inequalities I would add another commitment to a civic priority to serve and respect the human rights of the most vulnerable populations living among us around the globe. Especially financial aid and community support for refugees and survivors of natural disasters, to provide clean water, eliminate extreme poverty, educate the poor, care for the sick, and protect people marginalized and/or discriminated against by established societies and megacorporate international interests.
I thought we were making real progress until the problems with human rights violations started after 9/11 because our economic priorties shifted. The pre emptive military strikes loudly condemned by both Catholic Popes and practically ignored by our American Bishops were carried out by American leaders bombing in 4 soverign countries. They have wasted our tax money on massive death and destruction, human rights violations and environmental damage to our fragile planet's sustainabilty than at any other time since the Vietnam war.
We want more affordable health care, not more warfare or destruction of our earth's natural resources and raw materials.Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-49046440257685549952012-03-29T01:55:00.003-07:002015-04-22T18:02:28.480-07:00Welcome to my blog I'm trying to update again, by learning how to use google chrome as my new dashboardI'm so glad you found my blog, welcome to all, especially our dear new readers and my old bt friends, both caregivers and patients. <br />
(Anyone with a newly diagnosed or recurrent brain tumor after a radiologist doctor has read MRI or CT scans of the head is probably in shock right now) <br />
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Sorry to be so blunt with you dear new bt readers... but we are all blown away at first and I became very depressed for a while when they told me it had returned in the same place six years later after a successful total resection the first time. Second look surgery is becoming more common especially for younger people.<br />
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GK (Gamma Knife)Cyberknife, Trilogy or any linac brain radiation therapy is not an non-invasive option or cure in the usual sense of that word, except in the medical business marketing departments of a new GK unit for profit facilities before they treat you. Radiation therapy is basically pallative care for terminal conditions and some very aggressive brain tumors can and do come right back after either surgery or radiation. The smaller medical facilities that have recently invested in GK machines do want you to be their customer or patient client IMMEDIATELY, but they will not be able to help you if it comes back more aggressively in the unknown future. <br />
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Please get second opinions from a neurosurgeon, an endocrinologist and a skilled neuro oncology doctor before you are treated by anyone for a primary brain tumor. There is a new FDA approved drug therapy Korlym available now for primary brain tumors centrally located inside your brain, on or near the pituitary master gland. They are often called pituitary adenomas and can cause Cushings syndrome. <br />
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Brain surgery to remove the tumor is generally considered the best method of care by most neurosurgeons, then they can find out exactly which one of 120 or 150 brain tumor types you may have. Some places do a needle biopsy and a neuropathology report of your original tumor tissue to design an individualized treatment plan for you to receive specific personalized medications instead of an established standard of care for your follow up plan. <br />
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The exact size/type and tumor grade you may have can not always be reliably determined by MRI or CT Scans alone (they get it right about 80% of the time) and after brain radiation therapy if it comes back, the original tumor type may never be known because of additional DNA mutations and tissue changes after radiation treatment. Radiation therapy destroys the original tumor histology. I think that's a fancy marketing way not to say radiation therapy can cause cancer later on in life. I do not say I have brain cancer out loud or even to myself... Based on my belief that where there is a will there is a way, I trust God's will to provide for my future safety, I'm sort of a bit more childlike and more emotional than was normal for me. God knows and he must have planned it that way for a reason. Its not going be my way or the highway,so much as God's will expressed in his own way. And I am certainly not in control or in charge of anything much beyond my own behavior anymore. Nor am I the first person to use mind over matter to help my brain heal itself. <br />
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Neurogenesis, the birth of new adult brain cells is a proven fact now. Its not just an overly optimistic neuroscientific theory anymore, like it was twenty years ago the first time I read about it. Adults can grow tiny brand new brain cells with cognitive retraining and structured motivational guidance to avoid depression or apathy in about 4 to 6 weeks using good habit patterns and holistic cognitive, social and physical techniques. The human mind/body/spirit biochemical interconnections for self improvement and self control are also known biomedical facts now. Encouraging daily habitual practice and various types of physical repetition, like walking exercise and music therapy are essential ingredients most bt patients can add to their own persistence and determination to finish a task without becoming totally frustrated. Therapists and loved ones can encourage new learning by cueing and prompts to start with individual baby steps, breaking tasks down into smaller individual goals just like a toddler beginning to walk. <br />
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You may want and/or need to go to a major regional city medical center or excellent university hospital for brain tumor care. Some meningioma brain tumors which are usually low grade tumors are caused by cummulative radiation injury after short or long latency periods of many years. I hope I didn't scare you when I sent the neuroscientists research report about longterm brain injury from prior radiation exposure. If it is very small, less than 1 or 2 cm, or if they say it is inoperable they may recommend having GK radiation without having any needle biopsy. Some may want to operate right away or watch it by MRI for three to six months or a year to see if it grows at all.<br />
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I advise active monitoring by MRI "watching and waiting" especially if you do not have any serious symptoms yet. Some people may have other serious health conditions which make surgery impossible, or it maybe located deep in the brain in a location that is too difficult for some cautious local neurosurgeon who mostly does back and spine surgery. To have the tumor removed completely you want to find the best facility that has a neurosurgery department w/speciality team of doctors and trained staff to remove brain tumors and give intensive neurological care post op. Not a nice popular local back and spine surgeon. Please check to find out if he removes at least fifty brain tumors each year so he has had plenty of practice. A needle biopsy can identify a small more aggressive type of brain tumor that probably will reoccur in less than a year or two after either surgery or brain radiation anyway. However there is no way to be sure what type of tumor it was by pathology after radiation treatment scrambles the DNA if it comes back again in 5 to 10 years and you might need more surgery anyway. There maybe other longterm side effects from radiation necrosis or swelling called brain edema, and other drugs you may need for the rest of your life, if the master pituitary gland receives any scattered radiation injury from exposure to radiation hot spots, if it hits bone or is deflected by small bony surfaces inside the brain. <br />
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GK may seem like a sure quick fix right now, and you may still be fine in a few years, but the longterm survival results are not guaranteed to be any better than actual brain surgery, we have had meningioma patients online here before who have had recurrence or other new mulitple tumors discovered either after GK therapy or after surgery, I do hope some of them who are still online here with more than 5 or 10 years since their GK treatment or surgery will write back to you I do not mean to scare you, but I do suggest you get other independent second and/or third medical opinions from major brain tumor centers where the doctors treat hundreds of brain tumor patients each year of all types and grades with surgery first, so they know exactly what it is before they radiate your precious remaining brain cells, because any radation therapy has to go through healthy brain tissue to get to the tumor area. And some brain tumor patients need anti seizure drugs for the rest of their life or hormone supplements if their pituitary gland is damaged by radiation. <br />
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Please read my list of 28 questions to ask your medical team and discuss with your significant others, with each second opinion doctor visit you will learn more about your specific condition and possible drug treatment options for some without surgery or radiation therapy. Currently mifepristone is being made in other countries for birth control, like China and India where it is very popular and very cheap, here in the US the brand names Mifeprex, Corlux and now Korlyn, are very expensive and only used for oral contraception and Cushing's disease after testing it for safety for more than ten years. <br />
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Please send for educational handbooks of brain tumor treatment from the major not-for-profit bt support organizations in Boston, NYC, Chicago and San Francisco, it only takes a few minutes to google, call or email all of them for their free literature and then you and your family will have well organized printed material to read and plan together at your own pace and determine the best way for you to proceed in the beginning, or if you have a recurrence like I did. I was able to get my own FDA approved investigational clinical trial after I volunteered for a NCI clinical trial meningioma drug therapy instead of either standard surgery or radiation. I'm still fully alive, fully human and dancing and singing, reading and writing, walking and talking 29years after my first surgical removal and I have postponed the standard tumor board recommended brain radiation therapy for more than 20 and I had my gradual slow growing reccurence safely debulked 15 years ago. I'vebeen on the drug Mifepristone for a total of 12 years with no noticeable permanent side effects from the safe non toxic drug. <br />
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GBYAY Anne McGinnis Breen, a 29year survivor of a grade 2 meningioma which has regrown a bit each time after two surgeries couldn't get every single bad tumor cell from behind my left eyeball, but it has not progressed to a higher grade tumor as some other patients tumors do, especially after brain radiation therapy. See my ponytail bouncing and my smiley face winking at you? &;>)<br />
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Hope is a free gift I want everyone to have at each step of their journey in life. <br />
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"Hope has two daughters--anger and courage: anger at the way things are and the courage to work to make things other than they are." -- Saint Augustine<br />
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Keep your faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-37469139082128947922012-02-23T05:36:00.001-08:002015-04-22T19:10:08.715-07:00My old profile I just saved before it was deletedAnne McGinnis Breen<br />
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. <br />
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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.<br />
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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. <br />
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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.orgAnne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-13143425958816086552012-02-23T04:39:00.000-08:002012-02-23T06:21:02.783-08:00FDA approves Mifepristone for some Cushing's disease symptoms(new brand name Korlym)Here is the link to http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm292462.htm
Korlym, the new Corcept Inc brand name for Corlux and the old generic Mifepristone might also help anyone with diabetes suffering from a pituitary adenoma brain tumor or a primary brain tumor pressing on the pituitary gland which is the master gland. The FDA News report mentions the word en·dog·e·nous ( n-d j -n s). adj. 1. Produced or growing from within. 2. Originating or produced within an organism, tissue, or cell: Mifepristone or Korlym is now FDA approved for endogenous Cushing's disease.
I highly recommend that my new dear meningimates (my own affectionate term for patients and caregivers) check out their own symptoms if they are badly overweight, frequently tired and out of breath and have high blood sugar levels compared to a list of Cushing's disease syndromes and get a doctors referral for a second opinion from an endocrinologist before they have either surgery or radiation therapy if possible, and if their brain tumor is or was centrally located near and/or causing internal pressure on their pituitary gland. Remember, I'm not a doctor or a nurse, just an experienced and informed brain tumor survivor.
In fact, neuroendocrinology is a tough course of study, its an advanced medical specialty with these two major fields of medicine overlapping, so highly skilled neuro-endocrinologists who can dispense drug therapies are few and far between in the US today.Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-43230974768116087612012-02-11T03:35:00.000-08:002013-06-19T16:33:02.116-07:00Anne McGinnis Breen's Brain Tumor Blog: Genetic links to meningioma<a href="http://gbyay.blogspot.com/2012/02/genetic-links-to-meningioma.html">Anne McGinnis Breen's Brain Tumor Blog: Genetic links to meningioma</a><br />
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MY dear Meningimates,<br />
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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.<br />
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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. <br />
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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.<br />
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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. <br />
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http://insciences.org/article.php?article_id=10259<br />
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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.<br />
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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. <br />
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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. <br />
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I added four reliable medical links below to read more about the potential disease progression of each one.. <br />
Studying about our genetic history is like studying our family history and the extra reading is good cognitive therapy too. lol<br />
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http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm<br />
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http://www.cancer.net/patient/Cancer+Types/Cowden+Syndrome<br />
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http://emedicine.medscape.com/article/1114125-clinical#a0217<br />
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http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002423/<br />
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GBYAY Anne McGinnis BreenAnne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-28641108981472377072012-01-06T02:50:00.000-08:002012-02-11T03:26:46.551-08:00My House Rep Gabrielle Giffords is recovering quite well from her AphasiaThis weekend January 8th our Tucson community is going to be commemorating the tragic mulitple shootings and six deaths, including a federal judge, last year outside my local Safeway grocery store. Memorial events and special activities are scheduled all over town with more than a dozen peaceful community events and prayer services as you can read about here. <br />
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http://www.kvoa.com/full-coverage/triumph-over-tragedy/<br />
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FYI Please find two articles about Gabby's aphasia condition in the MED Page Neurology Gadget in the left side column of my blog. And or check out the Brain Injury Association website for facts about mild and traumatic brain injury. I wish they would mention the correct medical word for her condition so my dear meningimates with word finding issues would know what is really happening to them and would not become as emotionally frustrated as I was when it temporarily happened to me. <br />
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Gabby was recently interviewed on the ABC Evening News by Diane Sawyer and her physical recovery has been remarkable thanks to the extended "state of the art" brain rehabilitation,speech and cognitive therapy she has been receiving daily for the past full year. Obviously Federal health insurance is much better than what most ordinary Americans receive at their job or have to pay for themselves thanks to our tax dollars. (Jan 26th Now she has resigned) Even if she resigns or loses her job in Congress, she will not lose her federal health insurance plan benefits since she has been on the job five years. The Federal insurance plan for US government employees and elected officials is the best in the land and its socialism for powerful and influential politicans. None of them seem to object to the high quality socialized national health care that we provide for each of them. I'm just saying, wouldn't it be more democratic if they would provide the rest of us ordinary 99% with the same level of quality national socialized medical care that 2 million of them get? <br />
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Some of us living with a brain injury like mild aphasia, after one or two craniotomies or brain radiation and chemo may struggle very hard home alone to get cognitively back up to speed and go back to work. IF we can walk and talk, we may not be told about treatment for mild aphasia or balance problems or how to apply for or be able to afford a few weeks or months of physical therapy and professional speech therapy with word finding problems, facial retraining exercises, organizational and social skills retraining with a neuropyschologist, occupational therapy and the vestibular balance retraining she is getting and still benefiting from every day. We may need some professional counseling support to recover to the best of our ability and may need new social coping skills to avoid depression or new bad behavior habits after major brain injury or surgery, if we can afford it, because many of us do not have medical health insurance that covers any cognitive and behavioral rehabilitation. She can bravely sing a string of words from a song, yet she has great difficulty expressing her thoughts in her own words and forming complete sentences of more than a few words. <br />
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Back to my main social issue, "Triumph over Tragedy in Tucson" is this weekend. The ongoing tragedy is that the great state of Arizona has made more massive budget cuts to mental health care services for brain injured people, troubled youth and adults in Arizona despite this recent tragedy. The young shooter bought his gun and tons of ammunition at a Walmart. He was rejected by the US Army and ejected from the Pima County Community College campus and told to seek mental health services,that information should have been used to add his name to a no buy list wherever weapons are sold, in his condition that was on record, he never should been allowed to buy any weapons. And another major event scheduled in Tucson this weekend is the Pima County Fairground GUN SHOW. How sad and ironic that Pima County officials allowed this gun show to come here on this important symbolic anniversary weekend and some of my neighbors will be buying more new guns right here in her/my Congressional House District this weekend. No funds for mental health needs, or gun sale controls, but we will spend to have a special addition election for someone to take over her spot before the general election in November. What a waste of state funds since her district borders have been changed and gerrymandered out of Pima County to eliminate the NW Tucson area of two small growing towns. My new Rep will be serving Oro Valley, Marana and all the rural areas, Navajo and Apache lands all the way to the northern AZ state border along the eastern half of the state. <br />
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Perhaps I will call the gun show for more detailed information and to express my dismay since people are not allowed to bring their pet dogs to the Pima County Fairgrounds, and of course, there is no smoking, and here in rural Republican run Arizona they can bring their own guns almost anywhere they want, even into local bars. Now the strong AZ Gun NRA fans have proposed an AZ state law to allow concealed weapons on our three AZ University campuses. Are they crazy? Jan 7-8 AZ Tucson, Pima County Fairgrounds, Crossroads of the West 801-544-9125Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-20613099912850939952011-11-17T05:46:00.000-08:002012-02-11T03:44:21.501-08:00Drugs for unmet needs may soon get faster FDA approvalhttp://www.bloomberg.com/news/2011-11-16/drugs-for-unmet-needs-may-get-faster-approval-under-senate-plan.html<br />
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A new FDA proposal with drug companies might help more people with meningioma and cancer get Mifeprex like I do in a FDA investigational clinical trial.<br />
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This proposal might prevent deaths like the tragic story of the real Norma Rae, Crystal Lee Sutton, a union activist who died after a two year struggle with meningioma. There is still no standard chemo for meningioma so insurance companies do not have to pay for any drug therapy for this disease. They delayed paying for any other type of brain cancer therapy for two months. She had already had brain surgery two years in a row which probably used up some type of annual insurance cap on her treatment costs. <br />
http://crooksandliars.com/susie-madrak/norma-rae-dead-68-after-two-year-struAnne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-29435869649831968442011-11-08T21:13:00.000-08:002011-11-17T03:03:22.566-08:00Mifepristone for Meningioma 2004 and 2006 research reportsMY dear Meningimates,<br />
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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. <br />
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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. <br />
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http://www.nature.com/eye/journal/v18/n9/full/6701370a.html<br />
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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. <br />
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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. <br />
<br />
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.<br />
<br />
• Long-term administration of mifepristone (RU486): clinical tolerance ...<br />
www.ncbi.nlm.nih.gov/pubmed/17162554<br />
by SM Grunberg - 2006 - Cited by 47 - Related articles<br />
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 ...<br />
<br />
<br />
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.<br />
<br />
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. <br />
<br />
• Rochester Study Rolls Out RU-486 to Treat Uterine Fibroids - News ...<br />
www.urmc.rochester.edu › NewsroomCached - Similar<br />
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 ...<br />
• Pathology Study Tracks Uterine Changes with Mifepristone - News ...<br />
www.urmc.rochester.edu › NewsroomCached<br />
Mar 7, 2011 – URMC Research Confirms Possible Use of Drug for Painful ...<br />
Show more results from rochester.edu<br />
• <br />
• Pathology study tracks uterine changes with mifepristone<br />
www.sciencedaily.com/releases/2011/03/110307124927.htmCached<br />
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 ...<br />
These extra pathology study reports showed no pre cancerous changes to the uterus with low dose Mifepristone use. <br />
<br />
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.<br />
<br />
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." <br />
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." <br />
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." <br />
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. <br />
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." <br />
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." <br />
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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.<br />
<br />
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. <br />
<br />
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. <br />
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GBYAY Anne McGinnis Breen <br />
See my ponytail bouncing and my smiley face winking at you? &;>) <br />
<br />
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 <br />
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Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-50487385245340623412011-10-30T03:20:00.000-07:002011-10-30T03:20:55.916-07:00More Health Care, not Warfare, more basic human needs. not corporate greedThis month of October 2011 marks the eleventh year of our country’s longest war in Afghanistan and the onset of the 2012 US federal budget, which provides unlimited funds for war and corporate greed, while withholding funds for basic human needs. On October 6th, a protest assembled at Freedom Plaza in Washington, D.C. with the goal of “nonviolently resisting the corporate machine by occupying Freedom Plaza to demand that America's resources be invested in human needs and environmental protection instead of war and exploitation.” <br />
I agree with the Occupy Wall Street and Occupy Washington DC movements to promote peace, not war, equality not discrimination, sustainable stewardship of our planet for all humankind, with a preference for the poor, the sick and the marginalized.<br />
GYBAY Anne McGinnis BreenAnne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-18767477755611502962011-08-30T18:41:00.000-07:002011-10-19T21:02:06.836-07:00Mifepristone blocks 10 types of cancer cells in laboratoryRead the new research at http://www.biomedcentral.com/1471-2407/11/207<br />
<br />
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. <br />
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.<br />
GBYAY Anne McGinnis BreenAnne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-42599833233760425252011-04-30T03:19:00.000-07:002011-11-17T05:55:30.719-08:00Meningioma webinar info and patient questionsMy dear Meningimates, <br />
(My personal affectionate term for us Meningioma survivors and our loved ones) This is the NBTF followup patient question section and the Meningioma webinar if you missed it.<br />
<br />
http://my.braintumorcommunity.org/forums/Topic4463517-4610-1.aspx?cons_id=&ts=1304025413&signature=9eecdd387196dc681b98acd3fabaff6f<br />
<br />
Great information for those whose lives have been affected by meningioma. You will find answers to some questions for which it is hard to find straight forward answers. There are also links to research articles<br />
in response to some of the questions.<br />
<br />
Thank you NBTS for posting this on their website and to all who submitted such good questions for the discussion.<br />
<br />
And my special thanks to Cindi Rixey Scott who posted this on another braintrust m list GBYAY AnneAnne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-47789394116328074592011-04-29T23:14:00.000-07:002011-04-29T23:14:34.268-07:00Good information about new surgeries for meningiomaExcept that new meningiomas are now being diagnosed in 34% to 37% of all new primary brain tumors, not 20% as this website says.<br />
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http://www.skullbaseinstitute.com/meningioma/Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-5480069168801272592011-04-13T09:55:00.000-07:002015-04-22T18:08:43.566-07:00My dear meningioma friend Karen Catlin RIP died April 9, 2011Karen Catlin, one of our formerly most active online participants since the beginning of Alan's "Meningioma Talk" online groups shared her love, her humor, her knowledge of medical things and her gentle touch and gave us her time and talent for many years after her inital brain radiation therapy in Florida . Her words were a great comfort to many of us in times of medical crisis and during our ongoing bt recovery process.<br />
<br />
I just got the call from a longterm friend of hers on Saturday April 9,2012 ... I visited her in early February after she missed the January Florida Bt conference. She was suffering from alot of pain. She had gall bladder surgery in February which didn't eliminate her pain. Afterwards they discovered something else on her chest scans and she had major lung surgery in April. They said it was stage 4 lung cancer and she was not able to recover afterwards, she died after two days in hospice on Saturday. <br />
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Our dear sweet meningimate Karen Catlin, 53 from Tampa Florida will be sorely missed by many of our regular online m readers and those who met her frequently in Florida and her many dear friends Fred, Jesse and Alan. I am very sad, my words are inadequate. Karen was my precious roommate every weekend for the past ten Florida Bt conferences since my second brain surgery and her one shot radiation therapy in Florida for her meningioma brain tumor. She always cheered me up, lightened my load and helped me recharge my own batteries, she was energizing, generous and caring of others, she understood their suffering and was comforting. She personally helped care for our meningimate Rick Fels, Fred's son for a long time. She will be greatly missed by her own family, her husband Steve, her son Daniel and many more relatives and good friends. She was a great woman and a good friend in deeds.Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.comtag:blogger.com,1999:blog-2495524791458951378.post-6687912321046506042011-04-12T03:09:00.000-07:002013-06-19T16:42:06.904-07:00Please help me and others get this HR 1055 bill for MEDICARE drug coverageThornberry Introduces Bipartisan Bill To Let Patients Get the Medications They Need <br />
<br />
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. <br />
<br />
I need brain tumor community advocates to help get this same bill introduced in the Senate as well by writing to their state senators. <br />
<br />
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. <br />
<br />
Please write to your state senators, tell other brain tumor patients, doctors and other cancer organizations about this new bill HR 1055. <br />
<br />
Washington, Mar 18, 2011 <br />
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.<br />
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. <br />
“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.<br />
The bill would give Part D plans the same flexibility allowed under other parts of the Medicare program and in the commercial insurance market.<br />
“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.”<br />
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. <br />
“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. <br />
The bill is also supported by the National Multiple Sclerosis Society, the Medicare Access for Patients-Rx (MAPRx), as well as:<br />
The AIDS Institute<br />
The ALS Association<br />
The Alzheimer’s Association<br />
American Academy of Neurology<br />
American Autoimmune Related Diseases Association<br />
American Society of Consultant Pharmacists<br />
Arthritis Foundation<br />
Center for Medicare Advocacy<br />
Easter Seals<br />
Hemophilia Federation of America<br />
The Lupus Foundation of America<br />
Men’s Health Network<br />
Mental Health America<br />
National Alliance on Mental Illness<br />
National Council for Community Behavioral Healthcare<br />
National Grange of the Order of Patrons of Husbandry<br />
National Health Council<br />
National Spinal Cord Injury Association<br />
National Organization for Rare Disorders (NORD)<br />
RetireSafe<br />
United Spinal Association<br />
<br />
# # #<br />
Additional reading about Medicare news<br />
http://www.medpagetoday.com/PublicHealthPolicy/Medicare/ <br />
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GBYAY Anne McGinnis Breen <br />
See my ponytail bouncing and my smiley face winking at you? &;>)Anne McGinnis Breenhttp://www.blogger.com/profile/16858705430213981370noreply@blogger.com