Tag: Souris

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Myeloma Stories

Verne S. – Souris, Manitoba, Canada

I was diagnosed with myeloma eight years ago. No symptoms, just picked up in an annual medical mostly due to low hemoglobin (117) m band count was 44. started on dexamethasone alone, dropped to 20 but soon started to rise.  I was on track for an ASCT , was harvested but then upon testing found that I was 4;14 positive, so was not an ideal candidate for an ASCT.

I was fortune enough to be enrolled a clinical trial mostly using velcade quickly dropped down 0 myeloma count and was fortunate to remain there for over 48 months from the start of the clinical trial.  Slipped out remission over a year ago and now am on revlimid, dex and cyclophosamide.  Although initially disappointed that I did not reach a negative count, I am now at 4 for last few checks and will live with that.

I know that I will slip out of remission with revlimid but look forward to several drug combinations pomalidomide, carfilzomid, velcade sub q and any number of combinations with some of the new novel drugs. And I guess that I still have my stem cells stored so this could still be an option if deemed necessary.

I guess what I am trying to leave with this story is that when I was diagnosed the doctors said I only have 2-5 years. I am now working on nine years and feel that the future is even brighter than I have experienced over the last journey.

– Verne

Categories
Myeloma Stories

Verne S. – Souris, Manitoba

I was diagnosed almost seven years ago with iga multiple myeloma. I was told at the time that life expectancy was from two to five years. I Was harvested for an ASCT but one of the chromasone tests indicated 4;14 positive. patients with this condition typically go out of remission sooner than standard risk patients. I was fortunate to be accepted on a clinical trial mainly taking velcade and dexamethasone. It worked very well for me as I kept in complete remission for 47 months. I have slipped out remission almost ten months ago but am being treated sucessfully with revlimid. I guess what my story tells us is that patients can do better than the averages. The seven years that I have lived has allowed great steps forward in the treatment of multiple myeloma. Keep up the fight.

— Verne S. 

Categories
Myeloma Stories

Verne S. – Souris, Manitoba

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.