Hello
I’m sorry to hear about your husband who, reading your other posts, has had a rough time. I believe you are in the right place on Myeloma UK who publish some excellent guidance and provide this forum where you can express yourself and perhaps get some reassurance.
Looking at your questions I think you remain uncertain about the benefit of high dose therapy (HDT). This can be a subject about which some people have strong opinions. For some who are too old or too frail, the treatment is considered to have more disadvantages than advantages. There has also been a debate whether it is beneficial given the development of new drugs. The decision to proceed with HDT must be between yourselves and your consultant. I am a strong advocate of informed decisions so do read everything you can on the subject. From my experiences, and in my personal opinion, HDT offered me the best chance of lengthy remission and associated quality of life.
Similar to Vicki’s husband, Colin, I was diagnosed in October 2011. I received 4 cycles of RCD and two consolidation cycles of VCD. For me, neither treatment brought my Paraprotein to zero so HDT would seem to have been the best choice (whatever others might think). It was made clear that in order to proceed to HDT I needed to achieve a reduction of at least 50% in PP. I believe that this was to demonstrate that I would respond favourably to HDT. Once the decision was made that I should receive HDT the next appointment was to check my general health to ensure that there was nothing that would preclude the treatment.
The first element was two nights (should have been just one) in hospital to receive Cyclopriming. This is not given at all hospitals. It involves a fairly high dose of cyclophosphamide and lots of fluids. The intention is to encourage the excessive production of stem cells.
The next element was a course of growth factor injections. I chose to be taught how to self-administer them. They have to be given to a very strict timetable. Like some others on this forum, I did develop quite severe bone pains.
Toward the end of the course of growth factor, I then attended the apheresis unit just like Colin. At the unit, they first take a blood test called CD34. The result does not take long and confirms whether cells are available. I was then connected to the apheresis machine on three consecutive days until I had harvested just enough cells to proceed. The number of cells varies a lot between patients and, in my case, may have been influenced by Revlimid. It has a reputation for suppressing the production of stem cells.
It was then necessary to attend another clinic to again check my overall health to ensure that I would be fit enough to be admitted. Three days later I was admitted into the ward for High Dose Therapy and Stem Cell Transplant.
That was July 2012. I had been warned that the process, from diagnosis to recovery from HDT&SCT would take about a year. I was rather more fortunate being discharged after 16 nights and my recovery was quicker than is perhaps usual. I was able to go on holiday to Madeira in February 2013. My response to treatment seemed disappointing but my PP continued to fall until July 2013 when it reached a plateau of 5 (thus Very Good Partial Response). What is most important though, I feel wonderful. My energy has returned although my back ache does limit some activity. My quality of life is excellent. Was it worth it? Yes! Would I do it again? Yes, and in fact I will try very hard to get a second HDT&SCT even though I currently don’t have any spare cells.
One final point. I note your concerns about Zometa. Like many others, I was put on it when first diagnosed and, so far, have not got any side effects. The benefits, for me, have far outweighed any disadvantages.
I sincerely hope that your husband, and you, have the best possible experiences. Good luck to you both.
Stephen
AV8R 10 years, 10 months ago.
