[GaryV]

Originally Posted by Hopeful

Hi GaryV,

Although you have an "excellent hemotologist", I am a firm believer in second opinions. Your case seems complex and deserves more attention as there may be more options.

In my experience, the doctors with a "passion for bone marrow failure diseases" will hold your hand more through the decision making process. Find one of them.

Thank you for your feedback. I didn't talk about the hand holding through the decision making process. There is sufficient touch, listening, and respect of my questions in the process.

I've been living with this for nearly 5 years. I have had second opinions. At this stage, about the only question that might merit a second opinion is whether or not spontaneous remission of transfusion dependence occurs with any frequency.

I have nothing against drug therapy. I believe Revlimid is not a good choice because I am not 5(q) deletion and my marrow is not fibrotic. Vidaza and Dacogen hypomethylating agents. Common side effects are anemia and low platelets. In my particular case, I am already critically low in those counts.

I do have other medical conditions. You say never give up. Choosing not to do drug therapy is not giving up. It is a viable option.