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sdrake
MemberI am so sorry for your loss. You and your family will be in my prayers.
God Bless,
ShariMemberMy dad was on Revlimid for almost 8 months before they gave up on it. They kept saying "it should work". Dad was -5q, and we were so hopeful that Revlimid would be the answer. He was on Vidaza with great results. It stopped being effective after about 2 1/2 years.
Best of luck to you.
MemberKathy,
I am so sorry to hear of your Dad’s passing. He is at peace and free from this horrible disease. I pray that God gives you and your family the strength to get through this sad time. Know that many thoughts are with you.
Take care,
ShariMemberGood news, Jack! I think about you often. I sure wish Dad would have tried Dacogen. It just wasn’t in the cards for him I guess. I am so glad you are having such good results with it. Over all how do you feel? I imagine getting rid of that spleen made quite a difference.
Take care and have a Happy Thanksgiving.
ShariMemberJack,
I am so sorry to hear of your wife’s passing. She is indeed in a better place. This disease is brutal. My thoughts and prayers are with you and your family. Your wife was blessed to have you by her side.
Take care,
ShariMemberI understand how you feel. I remember when Dad was doing so well, and I felt guilty when I read of others’ struggles. Then the struggles became our own. I don’t want to be discouraging, but from Dad’s experience I do know that things can change in a hurry. That being said, Dad never gave up and kept trying everything suggested by the doctors. Has your mother ever tried Vidaza? Dad had a great response to it, as have many others. I wish your mom the very best. Please know that others understand and care.
Shari
MemberBirgit,
My deepest sympathy to you and your family. Your mother lives on in you and all who knew and loved her. God bless you –
Shari
MemberIt took several weeks for Dad to get financial assistance for Revlimid. He started the process in late June of 2007, and it was late August before he actually got the Revlimid in hand. I wouldn’t hesitate to get the process started if that is the direction you are going to take. Dad always regretted that he had to wait so long between stopping Vidaza and starting Revlimid.
Shari
MemberStacey,
Dad really had very few side effects to speak of. His arms got sore from the shots, and he had some constipation, but that is about all. He was able to maintain a pretty normal lifestyle while the Vidaza worked.
Shari
MemberIn my dad’s case there were positive results after the first round of Vidaza. His spleen started shrinking and his HGB increased. Within the first couple of rounds Dad’s spleen was normal-sized again. His HGB ranged from 10.5-12.5. Dad had CMML which causes a high wbc. The Vidaza controlled that for 2 1/2 years. We felt very fortunate that he had such a good response with it.
Shari
MemberNeil,
You will be in my prayers. Take care and keep us posted.
Shari
MemberRoseanneinia,
I am so sorry to read of your father’s death. I pray for you and your family, and for all of us battling this horrible disease.
Take care,
ShariMemberI am interested to read that you had your spleen removed. My dad has CMML too with a very enlarged spleen. He has always been told that removing it is too risky. He had 6 radiation treatments on it this past January. It has shrunk some, and he is more comfortable than he was. How long have you had CMML? Dad has had it for just over three years now. He got along great with Vidaza for about 2 1/2 years. It then became less effective. He has been on Revlimid since the end of August. There have been some improvements although it hasn’t worked nearly as well as the Vidaza did. I would be very interested to know a bit more about you and your experiences.
Take care,
ShariMemberMary,
When my dad was in the hospital with Influenza A and pneumonia this winter he needed transfusions almost daily. It seemed they did little good. As he got better, the need for transfusions wasn’t so often. He still needs one every 1-2 weeks, but at least it isn’t every 1-2 days as it was when he was sick.
Shari
MemberThanks for information Marlene. You are right on target. Yesterday they gave Dad another platelet transfusion (they had stopped the other one when he reacted). They gave the platelets at a much slower rate and gave him extra Benedryl. Thankfully he got along without any problems. We all kind of held our breath though!
Thanks again,
Shari -
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