Good evening Linda, Sally and kgtuck,
Thank you Linda, I know you and Al have been through a lot recently with your last oncologist, and now you have found a doctor that will work with you and Moffitt. Your outcome gives us hope that Dean and I will also find a doctor that will take the time to answer our concerns and fears.
We are going to call Moffitt and ask for a referral to a doctor in the Clearwater area, one that works with them. I feel better having a doctor nearby, even though Tampa isn't that far away, if Dean had to go in the hospital, it would be a very long drive everyday. We would feel better having a doctor in our area that will also work with Moffitt, if we ever have to contact them in the future.
kgtuck, thank you for explaining to me that you are still receiving Dacogen, and it is working for you. I don't like the idea of the doctor saying Dean is in remission and he doesn't have to continue on Dacogen, that worries me.
When Dean was first diagnosed, the doctor said Dean would be getting Dacogen and also be taking Revlimid. Now the doctor says Dean will no longer need to be receiving Dacogen, and he will just take Revlimid. I should add, that Dean has not started Revlimid to date, we have been trying to get it through the company since we do not have Medicare Part D. We have been approved and it should be delivered tomorrow. We have no idea if Dean will do well on Revlimid, yet we know he has done fine with Dacogen.
Two months ago we were told Dean had RAEB-t, 17% blasts. His blood counts were terribly low. WBC 1.1, RBC 2.9, HGB 10, and PLT 24. On Friday his blood counts were: WBC 6.0, RBC 3.1, HGB 9.7 and PLT 180. This is after only two cycles of Dacogen, so the doctor is saying these numbers show Dean is in remission. Something just doesn't feel right.
Three weeks ago Dean was in the hospital, his WBC was 0.3 and his PLT 3. Last week during treatment Dean said he felt a little less weak, but yesterday and tonight he is shaking, is very weak and just wants to sleep. It will be interesting to see what the blood counts are on Tuesday. I know we should be celebrating, but I guess the doctor being so sure about Dean being in remission has us concerned. We keep thinking, shouldn't that be based on a BMB, not the blood counts?
Hi Sally, you can hijack this thread anytime. You are so supportive and caring, always calling and checking to see how we are doing. I know I must drive you crazy with my questions, but you don't give up on me, you give me advice and cheer us on. Thank you so much. I hope you find an answer to your question on this thread. I sure wish I could help you as much as you have helped Dean and I through the last six weeks.
God Bless and hugs to each of you. Thank you for all the great advice, support, and kind words! Good luck to each of you as you also are dealing with so much in your lives.