Tag: Canada

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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

Bob S. – Winnipeg, Canada

Back in Februar 2012 , I was planning a golf vacation in Florida,but was suffering with a sore back. After visiting a hospital 2 mos. earlier(where they told me it was soft tissue damage), the pain persisted & I went to a sports medical center where they did blood tests & diagnosed the multiple myeloma.

Needless to say, I missed my vacation & spent two short 4/5 days in the hospital (my kidneys were impaired due to the disease) & then started 9 mos. of chemo. My Doctor suggested I might be a candidate for a stem cell transplant & we began treatments to aid in stem cell production. On Dec 24th,after another big blast of chemo, my stem cells were reintroduced.  The pain to my mouth & throat was almost unbearable but the nursing staff kept reassuring me that it would get better…tough to be positive when you have lost your hair, your appetite but I had an amazing support group who helped me through it.

Throughout this whole journey , I was amazed at the all the staff @ The Winnipeg Cancer Clinic. They are a different breed in the way they cared for their patients.  Caring, confident, courteous,& inclusive in their discussions right from the front desk through to the doctors.  You are made to feel important & I can’t say thank you enough for their care & compassion.

Last summer they took me off all meds.( hated the fact I couldn’t sleep after taking steroids).  I started golfing again & basically in remission for past 16 mos.  The only things that are lingering are slight numbness in extremities, low platelets & low hemoglobin which makes me constantly tired.  

Hopefully new myeloma drugs will be brought on stream which will aid in keeping this disease at bay.  Until then I will continue to treat each day with respect & a smile.  A special thank you to my wife who has been a rock for me even though I know how hard it was on her.

— Bob

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.