My husband was surprised out of the blue with a multiple myeloma diagnosis in September 2014. He had back pain and tiredness but nothing else until he also lost weight and I insisted he go to the doctor. Even they didn't suspect myeloma at first since they thought he looked too good.
He has a very severe condition, as he was diagnosed with Stage 3B multiple myeloma. They said 99% of his marrow was cancer, also with 15% of the disease spilled into peripheral blood he had leukemia and del P53. Needless to say, this was quite a blow when we grasped what was going on.
So, he has a very risky condition and the stem cell doc wants to go to an allo transplant ASAP as my husband is young, has no other health conditions, and is actually feeling better than he did before the diagnosis. He has thankfully tolerated treatment very well with few side effects.
Unfortunately, his kappa free light chain count is not dropping much anymore. He started at what they said was the highest that scale would measure, at 1800, and now 6 months later is at 250. They would obviously like him to be as low as possible before transplant, but the last appointment the oncologist seemed to be at a loss as to what to do next to get the numbers lower, so I thought I would put it out to this knowledgeable and experienced community.
He has done 3 months of a 4-day, 24 hour drip of bortezomib (Velcade), dex, thalidomide, doxorubin, cyclophosphamide and etoposide, followed by a month of 2-day infusion for 3 weeks of carfilzomib (Kyprolis) and lenalidomide (Revlimid), then a month of carfilzomib and pomalidomide (Pomalyst) and then this month added vorinostat (Zolinza). His numbers fell from 1800 to 1000 to 650 to 450 to 300 then 250.
If anyone has any thoughts I would appreciate it. At least it is something I can dig into and then ask the doctor about. We are willing to switch doctors if we feel someone else would be more helpful.
Thanks!
