Thought we were making progress - NOT

[milliken2]

Hello All;

Well - last week - on Monday - Earl had his blood draw at the hospital - it had been 2 weeks since his last transfusion - and his counts were down - so they scheduled him for 2 units of PRBC's on Wednesday - that was 16 days between transfusions, the longest time ever - so I thought we were headed in the right direction. Well - today, we went for the blood draw - then up for his chemo (this is the first day of his fourth session of Dacogen) and they sent the lab results up, and his Hgb was down to 7.6 - so - right after the chemo - he went for 2 more units followed by the Desferal. He is there as I type this. I was so hoping that maybe the Dacogen was working, but that's only 5 days between transfusions, so it looks like we are back to square one - weekly - if not more often - getting blood. I worry about him. Todays units make 150 units since the middle of August last year. The hema/onc wants to do another BMB next week - and send it to the same independent lab he used the first time. But, with him having chemo this week, by Friday, he will be down again, so I am sure he will be putting in another long day there. We are headed to Pittsburgh tomorrow to see his APS Dr. and find out if I should start giving him his Arixtra injections again. He has had 3 blood draws where his platelets are near the 50,000 mark. But he hasn't had any Arixtra since the middle of January when his platelet level dropped drastically. He did succesfully use the mediport for the first time today, and I hope it works for the rest of the week, because they pulled his PICC line at the hema/onc's office. It looks like this is the Dr/hospital week from you know where - but I am trying to keep it all straight.
Hope everyone else is doing better.

Beth

[bebop]

chemo will bring his numbers down quite a bit hon. we lost count of how many transfusions my dad had. I would have to guess well over 200. hopefully your husbands counts will come up between treatments.

[sandem01]

My dad took almost 5 months before the dacogen started working. Once it started working, he was fine for a year and a half (getting dacogen for 5 days every 3 weeks). The dacogen stopped being affective, so now they have him trying vidaza. He's been on this for almost 4 months, but there hasn't been any big improvement yet. He has to go get a transfusion tomorrow because his hemo is down to 5.7. I am praying the vidaza starts working in the next month. When he started dacogen, it was awful...his hemo went down really low and they put him in the hospital. He even wound up in ICU. He also had to get several transfusions after starting dacogen. It was so great when it finally started working! Your husband's situation sounds very similar to my dad's! Apparently it gets worse before it gets better.

[Al's Wife]

Beth,

I so feel your pain. So many times, I "thought we were making progress," only to be knocked down again. But we keep getting back up. Try to keep the faith. Believe me, there are lots of us who know how you feel. I wish they would have tried my husband on Dacogen after he did not respond to Vidaza, but none of his doctors agreed with me. Imagine that - they have a degree and I don't - that might be the reason! Got to find some humor somewhere.
I hope your husband does better soon. Hang in there.