Around last December, the symptoms for multiple myeloma became readily apparent affecting bodily function. We had smoldering myeloma, and were doing the wait and see approach. Then in December, it all changed. Pain around the body, difficult walking, difficulty going to the bathroom, and renal failure.
We had a bone marrow biopsy (BMB) with ~90% monoclonal cells.
Over the course of 9 months we were on CyBorD / VCD (cyclophosphamide, Velcade, dexamethasone) and eventually Zometa and the monoclonal cells went down to 5-10%. Yay! Momentarily.
We've been off of CyBorD for 2 months. The protein count was elevated, so they did another BMB, and unfortunately the monoclonal cells went up. I don't know by how much, but it was high enough that the doctor decided to start treatment again. This time with carfilzomib (Krypolis).
- I am surprised that the doctor decided to go with carfilzomib instead of back to CyBorD. Is there are benefit or drawback to this approach? I always thought you move on to the next drug if the current drug stopped working. From my understanding carfilzomib acts in a similar way to Velcade.
- For anyone that has taken carfilzomib - What are the side-effects that occurred? How well did you tolerate it? How long did you take it? Did you have a relapse after taking it? If so, how long did it take to relapse?
- What's next after carfilzomib? My understanding is that most doctors do something like CyBorD, then move to carfilzomib, but what after carfilzomib?
- Were we technically in remission for a brief moment? I am not sure of the definition of remission.
