Quote:
Originally Posted by Birgitta-A
Hi King Farouk,
You are right about my treatment - since I am very afraid of adverse effects I only accept supportive treatment. I had severe marrow fibrosis from dx May 2006 (I had probably had MDS for years) and I don't think my bone marrow could tolerate Vidaza. As a matter of fact Vidaza is only approved for high risk MDS in the EU and I still have MDS Interm-1.
Stem cell transplantation has never been an option for me because I was 67 yo at dx and as far as I understand low age is a very important factor for a good result.
I am still asymptomatic and I am thankful for every day i can continue with transfusions, Desferal, Exjade and Neupogen. Even if my life won't be much longer I prefer high quality of life.
You know nobody really knows how Vidaza should be dosed according to my doctor who is a specialist in Vidaza treatment in MDS patients. It is common to evaluate the result after 6 cycles. Perhaps it is better to try another drug after 6 months if the blasts have increased and counts decreased. It is probably not possible to know the reason for the increased blast cells.
Thank you for offer about help - I am very interested in your contacts with GSK about Promacta/Revolade.
Kind regards
Birgitta-A
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Hello Brigitta,
Dad will finish the last dose of the first cycle of Dacogen Tomorrow and he seems like he tolerated it well and no apparent adverse effects. He will also take his Neulasta shot 2 days later according to the program prescribed by Boston doctor. However, if the treatment works am not sure if we would expect the counts to go up again like it did before somehow I suspect the function of the bone marrow got stuck and the myeloid suppression that had occurred after the 6th cycle of Vidaza was irreversible. I believe the condition is termed persistent cytopenia that also known to confuse speculation of disease progression versus response to treatments prior to a BMB of course.
I should also mention that I spoke to the Kuwaiti doctor about Promacta as instructed by the GSK Rep. He indicated that Kuwait Cancer Center doctors can have direct access to the drug to treat ITP even if its not registered by the Ministry of Health (which is not so far) and could be procured to the patient as long as they are Kuwaiti nationals. He was reluctant to approve it in my dad's case saying that usually there are adverse effects like increased stroke potential and Myeloid fibrosis however he did not show a very strong reservations against trying Nplates indicating that there might be a second phase results trial on use with MDS patients and left it like that. How does Nplates compare to Promacta?
Also could you please let me know, if anyone in the forum you have encountered has been treated by Dr Azra Raza from St. Vincents in New York. Apparently she is a world authority on MDS and I was thinking of getting in touch with her to illustrate my dad's case. I want to be prepared for the next step.
Best Regards,
H