How do I tell cancer patients about a side effect ... - Breast Cancer

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How do I tell cancer patients about a side effect of gemcitabine chemotherapy called ?TMA??For anyone who may use gemcitabine chemotherapy, brand name: Gemzar, which is used to treat metastatic breast cancer, ovarian, lung, pancreatic, and other cancers. I started a yahoo group with info and medical journal articles on a little known side effect called TMA that is deadly but preventable and treatable.

http://health.groups.yahoo.com/group/Gemcitabine_induced_TMA

My mother lived for six years after being diagnosed with metastatic breast cancer. She still had a good quality of life, and required only a relatively low dose of pain medication. She didn?t die of her cancer, but of a little-known side effect of her chemotherapy, gemcitabine-induced TMA. This side effect occurs more frequently than thought, and is diagnosable and treatable. All gemcitabine patients should now monitor for gemcitabine induced TMA, especially older women who are having difficulty tolerating gemcitabine, like my mother.

How can I share this information with the people who need it?
There are dozens of articles about this on pubmed. There is no simple definition of the problem to search for. If you search pubmed.com for ?Gemcitabine? together with ?thrombotic? or hemolytic or vascular toxicity or TTP or HUS or TMA, you will find dozens of articles. One recent article by Izzedine et al. reviews previous literature on the subject, and gives info how to monitor for this side effect. Another article on TTP and plasmapheresis by Vesely et al. shows how to treat it. The highest rate reported is 2.2%, however this may be higher as doctors may not be diagnosing it at all. One article cited in the Izzedine article reports 29 cases in one institution alone. The belief that this is so rare is part of the problem. Doctors are not aware of it, are not looking for it and don?t know how to treat it. That is why patients on gemcitabine should be made aware of it as soon as possible, so they share this info with their doctors and know what to look for themselves.
It would be sad if there are patients unnecessarily dying from a treatable side effect that is never diagnosed, and the death attributed to their cancer, whether it is years, or a year or only a day of quality life that is unnecessarily taken away. Some percentage of gemcitabine patients, 2 or more out of every hundred, develop a side effect called TMA or TTP or HUS that is deadly if not diagnosed and treated. This TMA side effect is diagnosable, and treatable to full recovery (of the TMA side effect, not of the cancer). Gemcitabine has been used in thousands of patients. Copies of these articles are available at my yahoo group:
Humphreys et al., Gemcitabine-associated thrombotic microangiopathy. Cancer. 2004 Jun 15;100(12):2664-70.

Izzedine, et al., Gemcitabine-induced thrombotic microangiopathy: a systematic review. Nephrol Dial Transplant. 2006 Nov;21(11):3038-45

Walter et al., Gemcitabine-associated hemolytic-uremic syndrome. Am J Kidney Dis. 2002 Oct;40(4):E16

-marya
I am so sorry to hear that your mother passed away -and of something potentially maybe treatable. it is even more tragic. I understand you want to do something, so others will not need to go through the same.
TMA, thrombotic microangiopathy, is estimated to occur in 0.3% of patients taking gemcitabine. So it is very rare. Blood pressure raise was the 1st symptom in most of the patients.
Unfortunately tt is not always treatable.
Why not contact cancer associations -or maybe encourage the doctors to publish about it , or cancer organizations to give a grant for someone to study TMA. Making the cancer patients aware of this very rare condition is likely not going to help much -I think. Most cannot distinguish and wont be helped and the neurotic ones will become even more neurotic. But making the doctors more aware could be more effective, and publications or research is often helpful! So far only 3 articles of gemcitabine and TMA can be found on Medline!

-Thin Kaboudit
It may have escaped your attention that one of the frequent ?side effects? of cancer is DEATH!!!!

Given that, the possible side-effects of gemacitabe are fairly tolerable in a large population of patients!

I?m sorry for your loss, but isn?t six years ?extra mom? with these risks better than six years of no mom? The world is not yet perfect, if you want a perfect world you were born too soon!

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