[sdrake]

Jack,

I am interested in what you are saying as Dad’s doctor told him how “hard” Dacogen is on people. Dad responded very well to Vidaza – until it stopped working. He is starting his 4th month of Revlimid with little response so far. We keep hoping it will kick in soon. Dad’s doctor said it can take a long time and it “should” work for Dad. I have wondered all along about Dacogen for Dad since he had such a positive response to Vidaza. I know Dad doesn’t want to give up on the Revlimid, but I still think Dacogen might work much better for him.

Shari

[sdrake]

Katie,

I am so sorry to hear that your dad has relapsed. My prayers are with you all. Keep us posted on how things are going.

Take care,
Shari

What is a DLI?

[sdrake]

My dad did seven straight days. Dad’s arms would get pretty sore as well – sometimes worse than others.

Shari

[sdrake]

My understanding is that treatment with Vidaza is continued as long as it benefits the patient. My dad was on it for over two years and did very well.

I would certainly question why they are not continuing the Vidaza, especially since you are seeing a drop in counts.

Take care,
Shari

[sdrake]

Neil,

Dad’s counts were low when he was hospitalized and on IVs as well. They checked for internal bleeding and found none. Once he was off the IVs the counts rebounded.

Take care and know that many people are thinking about you and praying for your quick recovery. You have been such a source of information, strength, and hope to more people than you can even imagine.

Shari

[sdrake]

Donna,

Have they ever mentioned your dad having CMML? That is what my dad has, and the symptoms you describe sound very similar to his.

Dad was on Vidaza for quite some time with good results. It stopped working, and now he is trying Revlimid. It seems to be working somewhat. We just had an appointment yesterday with another oncologist who seems to think Dad should continue with it. They have mentioned Decitabine as another alternative. There are many on this forum who have had good repsonses to it. How does your dad feel?

I am not much help to you with your question. Hang in there. There is a great deal of experience and wisdom on this forum.

Take care,
Shari

[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

[sdrake]

Maureen,

Thanks, for sharing that bit of information. We can use all the encouragement we can get right now.

Shari

[sdrake]

Jack,

Thanks so much for your reply. How did your wife do on Vidaza? It worked so well for Dad for over 2 years. It is our understanding that Dacogen is closely related to Vidaza. We wonder, since the Vidaza stopped working, will Dacogen work? I know there are no for sure answers – wouldn’t it be nice if there were? I’m just curious as to what your thoughts are about this. Best of luck to your wife as well.

Thanks,
Shari

[sdrake]

Bill,

Thanks for sharing. My prayers are with Billy, your family, and all of us touched by the “World of Cancer”.

My best,
Shari

[sdrake]

Bob,

What great news! I don’t have any answers for you, but I can share my dad’s experience. Dad was on Vidaza for 2 1/2 years. He had a very good response to it, although not as good as yours. In the time Dad was on it he only required two transfusions. This summer Dad noticed his spleen getting larger and was experiencing some night sweats again. His blood work remaind quite stable though. His oncologist did another BMB. There wasn’t a lot of change, but the doctor felt it was time to switch to Revlimid. Dad was off Vidaza for nearly two months while he waited to get the Revlimid. Dad’s WBC skyrocketed. His CMML got way out of whack. I can’t help but think that had he done another round of Vidaza during the wait this might not have happened, but who knows. It seems that the Vidaza really kept things under control for Dad. I would be leery to stop treatments altogether. Just my two cents. Good luck and continued good health.

Shari

[sdrake]

Susan,

I am so sorry for your loss. Please know that God is near, and he will give you the strength you need during this difficult sad time. My thoughts and prayers are with you and your family.

Shari

[sdrake]

I don’t have an answer for you either, but I can tell you my Dad did very well on Vidaza for nearly two and a half years. He had minimal side effects. Did your dad get any direction from his doctors on what they would suggest? Your father and your family will be in my prayers.

Shari

[sdrake]

Jack,

Hope things are going well. Keep us posted.

Take care,
Shari

[sdrake]

Do they consider atypical CML to be CMML? My Dad has CMML and I know it has characteristics of MDS and MPD. Otherwise I am not much help. Ask lots of questions. Best wishes to you.

Take care,
Shari

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