I was diagnosed in January of 07. I was put on dexamethasone for about 1 to around 20 but started to climb topping out at 47 when the plan was for an ASCT. But from chromosome test it was revealed that I was 4:14 IGa which apparently does not do well with ASCT.
Previously I was harvested for stem cells and was fortunate enough to be enrolled in a clinical trial mainly using velcade and dex. This worked extremely well bringing my protein count down to 0 complete remission which lasted almost 48 months.
I thought I had it licked but I knew I hadn’t.
I became resistant to velcade and my protein began to rise again reaching 13 when my doctor felt something should be started. I am now starting my 4th cycle of lenalidomide and dex and after the 3rd cycle has my count down to 4. I have several concerns at this point. I do not want to become resistant to lenalidomide as I have already do velcade because at present there are the only two classes with pomalidomide and carfilzomib. I guess as options but they are of the two classes previously used.
I wonder about an ASCT even though it does not work as well with patients who are 4:14.But it would save the revelimid as I would have not become refractory to it yet and it could hopefully be used when the effects of the ASCT quit working. I have talked to an ASCT specialist who said that he would do the transplant but it was my decision. I really feel my regular doctor and the specialist want to continue on the revelimid dex. I am struggling with a decision as I am really not knowledgeable to make it. I am 66 years old and fear if I wait for the lenalidomide to stop working and then want to go with the ASCT, I could be 68-69 years of age and the ASCT could be tougher.
I am not sure this is the kind of story that you wanted in this segment but if I could receive any kind of help from 4:14 patients who have faced this dilemma or any other help I would certainly be appreciative.