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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Category Archives: Sorafenib

Today I have taken the last of the Sorafenib, will get my teeth fixed and cleaned, and have a CBC to check all is as OK as can be expected without any chemotherapy for a few weeks.


I take Sorafenib to keep my FLT-3 gene normal. When I left HK 2 weeks ago I was given a supply to last me, on the expectation that I would be returning on November 21. As it turned out, the transplant team in Singapore don’t want me to have any more chemotherapy before the transplant, so I came back to Manila.

My Sorafenib supply ran out today. I called a local Haematologist and asked for a prescription for the drug. His secretary called me back and gave me the number of the salesperson in the drug company who I could order it from. I called the rep and explained what I needed – half a box (30 tablets). He said sure, took my details told me the price and said that MedExpress Pharmacy would deliver. Medexpress called me 5 minutes later to say they couldn’t supply without a prescription. I said ridiculous, my doctor had given me the drug company number so I could order myself because he says they don’t need a prescription.

Oh well, as I write I am texting both the doctor and the drug company rep to see how we break through this stupidity.

Update: the Doctor’s secretary is faxing the prescription to the Pharmacy directly. Hopefully this means I can get a delivery tomorrow morning and just miss 1 dose.

Update 2: the Pharmacy called to confirm delivery address and said they needed me to hand over the original prescription to the delivery person tomorrow; which I don’t have as it was faxed directly to them!


Update 3: the drug was delivered at 10:00am today so I missed 1 dose last night – it’s happened once before! Very quick and efficient, paid by credit card, well done Med Express.

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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