What's going on?

[sdrake]

Dad is back in the hospital. He has been through 2 months of Revlimid with little improvement. The Revlimid seems to stabalize his hgb and plts somewhat, but doesn’t control his wbc. They tried a low dose of hydrea with the Revlimid to control the white count. His wbc got to about 50 again. He was also having severe pain in his knee. They found that Dad has a Baker’s Cyst with some infection in the knee as well. They said the infection may have contributed to the high white count, and he is getting IV antibiotics for that. The dose of hydrea was increased and Dad’s white count has come down to 11. They put in a pic line because they want Dad to continue the IV antibiotics for 10 days as an outpatient. His HGB was down to 8.3 yesterday, and his platelets were in the low 20’s. He got 2 units of blood and platelets, but this morning his HGB was 8.1. Any ideas about what is going on? He is getting really discouraged, and we are all concerned about the direction this is taking.

Shari

[jaxem]

shari
i’ve read your topic about your dad several days ago & was hoping that someone with cmml treatment exposure would offer comment. any thoughts about finding a stem cell donor for him? have you asked about dacogen which is similar to vidaza but is administered by IV, not injections which could make his life a little easier? exposure to revlimid will bring counts down.

[faith’s daughter]

Shari, I asked the same questions. Revlimed did initially bring my mom’s counts down and shortened the span between transfusions but it did finally kick in and she’s been transfusion free since May. The rbc and wbc didn’t respond as well as the platelets but I don’t think they’re suppossed to. when I looked around at similar posts it seemed the average wait for it to kick in was about 10 weeks. Just hang in there.

[sdrake]

Jack,

Thanks for your reply. Dad doesn’t want to give up on Revlimid too soon. He still hopes it will do something positive. Dacogen has been mentioned as the next step. I think that might be his best option. He responded so well to Vidaza, I am hopeful he would do as well with Dacogen. I have tried to talk him into going to the Med Center in Omaha, which is a Center of Excellence. I think they would be much more knowledgeable about stem cell transplants and might have more options for him.

Faith’s daughter,

Thanks for the encouragement. As I mentioned to Jack, Dad is reluctant to stop the Revlimid, as he hopes it will still kick in and work for him. I hope your mom continues to do well with it.

Thanks again to both of you.
Shari

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