Category Archives: AML
October 29, 2012 Fourth extra birthday
Today I turned 62. Without modern medicine and great doctors I would not have made it to 59.
We spent the morning in the hospital room of Alexa, a very brave 5 year old with AML, who was starting her third chemo session. Because of her cytogenetics she should have a BMT, but her 2 year old sister is not a match and no other donor has yet been found. We gave her parents some medical contacts in HK and Singapore and explained what we know about the costs of BMT there. In HK and most other places, to get typed as a donor is free. In the Philippines it costs PHP35K+ and that’s from a Government institution, so understandably there isn’t a serious donor registry.
Her doctors had apparently done a donor search in Taiwan, but from what we were told about cross-race matches, as she isn’t Chinese that was pretty much a waste of time. We advised searching in the US and Canada where there are large Filipino communities. We also advised them to make sure that she is transplanted in a centre which does a lot of transplants of that type. As far as I remember there is a specialist children’s unit in Queen Mary in HK.
It was probably too much information overload but we’ve told them they can contact us any time if they think we can help.
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- Posted under AML, QM HK
November 21, 2011 Sorafenib
Wikipedia: Sorafenib (co-developed and co-marketed by Bayer and Onyx Pharmaceuticals as Nexavar), is a drug approved for the treatment of primary kidney cancer (advanced renal cell carcinoma) and advanced primary liver cancer (hepatocellular carcinoma).
I was prescribed Sorafenib in June 2011 and I am still taking the full dose. It is rare, according to my doctor, for someone to tolerate the drug this long. I don’t have either of the cancers mentioned above, but studies have shown that it can reverse the mutation of the FLT-3 gene which is known to be implicated in Acute Myeloid Leukaemia (AML). Again, from Wikipedia: Adverse effects of sorafenib include skin rash, hand-foot skin reactions, diarrhea, and hypertension. A case of diffuse yellow discoloration of the skin has been reported. Sorafenib has also been implicated in the development of reversible posterior leukoencephalopathy syndrome and reversible erythrocytosis.
I get a few, transient, skin rashes; my blood pressure is slightly elevated and I get intermittent diarrhoea. I have never had the hand-foot skin reaction. And my FLT-3 gene is back to normal!
I will stop taking the drug a week before the start of the transplant so that it does not interfere with the drugs they will use then.
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- Posted under AML, Drugs, Sorafenib