My husband has had Myeloma for 6 years and has been through all the standard Myeloma treatments including 3 courses of radiation and 2 bone surgeries. He is currently on Carfilzomib with Cytoxan which has slowed his kappas from rising but has not brought them down. Has anyone been on Carfilzomib, Cytoxan, DEX, and pomalidomide ? ( POM didn't work just with dex) what has been your response and how was it tolerated? He also received Zometa for the first 2 years but has not received any since, even though he continues to have bone issues. I 've heard so many conflicting reports about Zometa has anyone continued to take it for years, if so how often and have you had any side effects?
thanks so much for your help, we are running out of options and will have to try a clinical trial next.
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Re: Next Myeloma treatment
Would highly recommend a clinical trial. If he is in good shape and has not had something like VTD-PACE, that could also be a consideration. If he is eligible for a trial, that would probably be preferred.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Next Myeloma treatment
I've been getting Zometa infusions for 4 years with no side effects at present. At first I was receiving them every month and then after my transplant when they were resumed it was every 6 weeks. During that time I had a rib fracture. I had a break from Zometa infusions last year for 3 1/2 months because I had knee replacement surgery. During that time the multiple myeloma came back with a vengeance and I developed some significant bone pain in the leg where I had the surgery. I seem to end up with bone problems whenever Zometa is stopped.
Yes, there is a risk of developing ONJ with prolonged bisphosphonate use and with development of brittle bones. But, right now, for me, I feel that taking that risk is better than having more broken bones.
Nancy in Phila
multiple myeloma '08, ASCT 1/10, restarted Rev/Dex 12/12
Humerus fx 4/09
Yes, there is a risk of developing ONJ with prolonged bisphosphonate use and with development of brittle bones. But, right now, for me, I feel that taking that risk is better than having more broken bones.
Nancy in Phila
multiple myeloma '08, ASCT 1/10, restarted Rev/Dex 12/12
Humerus fx 4/09
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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