My mom was diagnosed in april ’09 with MDS and had terrible bloodcounts (red cells as low as 3,7) so she’s been having bloodtransfusions on a weekly basis. Her blast in bloodstream were still under the AML level, but that doesn’t make the situation any better. She just finished her 5th round of Vidaza (7 days of injections, 3 weeks off) and holds up pretty well as far as the treatment side effects go. She’s lost a lot of weight, though, has very poor appetite, and one of her biggest problems is a fluctuating fever (going up and down from 99-104 or 105 every day) that slams her last bits of energy down. She’s been in the hospital for 10 days when this fever problem just started (in the first treatment month) and they ran every test possible but couldn’t find the cause of the fever. Now they have decided to accept this as either an effect of MDS or of Vidaza and she takes fever reducers when she feels the shakyness coming on (paracetamol). Still, it is taking it’s toll on her and it defenitely brings her spirits down. Has anybody had similar problems?
Also, we were hoping to see some response in her bloodcounts after 5 rounds of Vidaza (5 month period of treatment), but today she told me her red blood count was lower than ever (3,5). Does it really take even longer for Vidaza to start working or …..
We’re pretty desperate right now, up until last april my mom was one of the most active and lively people you’d ever meet, a PE teacher still teaching the elderly (!), now she has no energy at all and just feels miserable most of the time. We were so hopeful when we found out about Vidaza’s successes, now we’re not so confident anymore. Thanks for any insights you might have.