Tracy:
I am very sorry to hear about your serious side effect with Kyprolis (carfilzomib). Do the doctors think this will reverse itself, possibly, when the Kyprolis is stopped??
Thank you for sharing this experience. Good luck.
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Re: Kyprolis (Carfilzomib) Experiences?
My husband has been on Kyprolis, Pomalyst, and dex since last fall. He is now finishing his last cycle of it (stopping due to side effects). His M-spike continues to rise. He has been getting monthly RBC transfusions. This last cycle he only made it 3 weeks without needing a transfusion.
This weekend he broke out in petechiae over most of his body. Platelets were down to 13,000. Received a platelets transfusion on Monday. Hemoglobin was already down to 8.7 after receiving 2 units of RBC's on Friday. Are these low blood counts due to the meds or the disease? Hard to say.
Running out of treatment options. He meets with the oncologist today. The plan for now is to switch to bendamustine (Treanda), Revlimid and dex. At this time, it appears he has become resistant to all novel therapies. He could have another auto transplant, but they are not sure what the maintenance therapy could be.
This weekend he broke out in petechiae over most of his body. Platelets were down to 13,000. Received a platelets transfusion on Monday. Hemoglobin was already down to 8.7 after receiving 2 units of RBC's on Friday. Are these low blood counts due to the meds or the disease? Hard to say.
Running out of treatment options. He meets with the oncologist today. The plan for now is to switch to bendamustine (Treanda), Revlimid and dex. At this time, it appears he has become resistant to all novel therapies. He could have another auto transplant, but they are not sure what the maintenance therapy could be.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Kyprolis (Carfilzomib) Experiences?
JPC,
Great question. In general, the diastolic dysfunction should be reversible. This will need to be an active process on my part - more focus on heart health. For example, the carfilzomib also caused moderate hypertension - 140s-low 150s over high 80s-90s. I was 110s-120s over 60s-70s before starting carfilzomib. We were letting that ride without treatment. However, now that we know about the cardiac changes, I am starting an anti-hypertensive, even though I'm stopping the carfilzomib. Also, I'm starting a personal trainer who is also an RN and specializes in cardiac rehab, MS, ALS, and cancer for dedicated and organized conditioning.
The pulmonary hypertension is less reversible. I'm not sure exactly how much.
Fortunately, none of this really seems to impact my daily life very much right now. Surely if I tried to do the kind of exercises I was doing before myeloma, I would drop - I'm seriously deconditioned compared to before diagnosis. But that was happening before I started carfilzomib. It surely doesn't help my situation, but I can't blame it on carfilzomib.
Great question. In general, the diastolic dysfunction should be reversible. This will need to be an active process on my part - more focus on heart health. For example, the carfilzomib also caused moderate hypertension - 140s-low 150s over high 80s-90s. I was 110s-120s over 60s-70s before starting carfilzomib. We were letting that ride without treatment. However, now that we know about the cardiac changes, I am starting an anti-hypertensive, even though I'm stopping the carfilzomib. Also, I'm starting a personal trainer who is also an RN and specializes in cardiac rehab, MS, ALS, and cancer for dedicated and organized conditioning.
The pulmonary hypertension is less reversible. I'm not sure exactly how much.
Fortunately, none of this really seems to impact my daily life very much right now. Surely if I tried to do the kind of exercises I was doing before myeloma, I would drop - I'm seriously deconditioned compared to before diagnosis. But that was happening before I started carfilzomib. It surely doesn't help my situation, but I can't blame it on carfilzomib.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
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