Blood Counts: Up, then down, then up....

[Sue&Dave]

Going out of round 3 of Vidaza my husband has seen some promising results. The first 2 rounds really took a toll on him with significant fatigue and malaise (although he had that going in). Thankfully he only needed 2 transfusions right after round 1 (1 platelet and 1 packed red). While I wouldn't say he breezed through round 3 he did recover more quickly and had less 'down' days. He has blood work 2x week and we chart his counts (doesn't everybody? lol). Except for his platelets (that have been all over the place, but staying above 40 for the 1st time in over 6 months), we have seen a gradual increase in all of his counts. For the first time last week his ANC was above 1.5 and we were told to go off all of his prophylactic antibiotics and antifungals and he could also go off his low microbial diet (his ANC was going as low as .16) Celebration! Then yesterday his ANC was back down to .9 (back on the prophys per the doc). We will continue to take precautions and avoid salad bars, buffets and the like. But we are not avoiding crowds anymore and living like we did before treatment. Assuming that the Vidaza is working which I really think it is (next BMB in May), is this something to expect - ups and downs with the counts?

[Catl]

Hello Sue...I have the same question as my dad has also seen his counts go up and down. His HGb has stayed pretty much the same and low (he needs 1-2 bags a week), but his platelets went up after his second cycle (from needing a bag every 2-3 days to going up to 60) but down again during and after 3rd cycle. His wbc has been all over from as low as 0.2 to 1.5 with no consistency really. He starts his 4th cycle on Monday and I have a feeling his counts will have remained low because he is really weak and tired all the time. How has your husband been doing?

[Sue&Dave]

Hi Cat - so frustrating right? These are definitely questions we will be asking his doc later this month. Dave has finished his fourth round - which I guess is the protocol to determine whether the treatment is working. IMHO it has been working for him, but the BMB will tell all. Ironically his blasts never went above 6%, he just had overwhelming symptoms, which have pretty much been resolved since he started treatment. What we are seeing is that his white and thus ANC are the counts that aren't responding as well as the others. They go up around day 8-10 and then slowly slide back down the further we get away from treatment - but not down to his previous low levels. We are incredibly lucky that he has not needed any further transfusions and hope we can ride the Vidaza train for a while. I seem to recall another poster that said they have been on treatment for 8 years. Without a matched donor, we can only hope we will be as fortunate. Please keep us posted on the progress of your dad - hugs to both of you!

[Catl]

Hi Sue, glad to hear that things have been going well for your husband. Unfortunately, it seems the Vidaza didn't work for my dad. He had a BMB a couple weeks ago and results came in that his MDS had progressed into AML . They transferred back to the Ottawa hospital across the river a couple days later and he j7st completed his day 6 of a 7+3 intensive induction treatment. He has been doing really well so far with very little side effects but those will apparently kick in in a week or so. They hope to get him to remission for the transplant. On the transplant side, my aunt was identified as a perfect match but we found out recently as well that she can't be a donor because she has hep c. That was a huge disappointment. The transplant team is now looking to do a haploidentical transplant with either my sister or me as a donor. We actually found out that we are both 5/10 but ghat we also have 3 more factors that are almost identical.

Good luck with everything! I hope you can continue with the Vidaza for a long time!!

[Sue&Dave]

Oh Cat, I am so sorry to hear that Vidaza did not work. How is your dad doing now? Since they have started the induction therapy to get him to remission - does that mean they can proceed very quickly to transplant and he won't need additional intensive chemo? My husband never had a sibling match, nor is there a match on the registry (so far) so likely will be one of our sons. We met with his hemo yesterday and had a BMB, results not for another week or so. Doc was pleased with his blood work and thinks the Vidaza is working, but does not want us to lose sight of the transplant process to have everything ready for when it stops working. She says we can expect 1-2 years of response from Vidaza - but says she has had people on it for 7 years. My thoughts and prayers continue to be with you, your dad and the rest of your family. Please do keep us posted.