Tiredness MDS and Vidaza

[PhoenixFire]

Hello, I found this forum randomly searching about my grandma's treatment with Vidaza... she's 80 years old as has been diagnosed and treated ever since the end of 2013.

Well, I must say my first language is not English, and while I'm comfortable writing most of the times, I struggle to understand some of the acronyms and therms used here or generally related to this topic (it can be very complicated) and honestly I don't know much in deep about the disease and what caused it on her specific case, nor the fine details as it wasn't me who took care of the arrangements back when it was diagnosed. So please, bear with me.

Well, so far she's been good on it for almost 4 years and had a good quality of life, of course with the problems that came during the applications... however, during off time she had a good quality of life.

Yet, her heart began beating so slow that she had to put a pacemaker, hastily ... Apparently vidaza is cardiotoxic but in general she had a great recovery with the pacemaker and was able to enjoy life again. However, last year, apparently her doctor elongated her cycle of vidaza greatly because she was doing fine without it for months, and due to concern for the toxicity mentioned above... she went fine for a long time, yet, after about 6~8 months off vidaza, her blood counts started to drop suddenly and by the end of the year she had to get back to it as fast as possible. I think it was a mistake, but as I said I don't understand the protocols in such detail and I guess it was a gamble on cost/benefits.

For what I know, her MDS has advanced a lot and is nearing leukemia but everyone tells me it can be reversed yet if she goes back to vidaza (which she did). She's so far 2 cycles upon it already after the return and another one to start soon... however... I know with the greater age she is in, this is to be expected, but she's suffering a lot more and needing transfusions (something she could go without before). Even with transfusions she's feeling extremely weak and tired pretty much all the time! She can barely walk to the front door without having to sit down...

The doctors says its alright and the cardio exams are fine so far, but she really is feeling down..

Is there anything we could do to help? Like theres some kind of supplement or vitamins we should check out? She's generally tired and out of breath. The medics say its alright, but she is feeling very depressed because of it...

If anyone knew of something to help, it would be greatly appreciated.

[Leigh Clark]

Hello - I hope your grandmother is feeling better soon. If you are interested in seeking a second opinion regarding her treatment, contact Dr. Phillip Scheinberg Chief, Head of Hematology Hospital Sao Jose, Beneficência Portuguesa Hospital, Sao Paulo, Brazil
Phone: 55-11-3505-6615
Email: scheinbp@gmail.com