My M spike is up again. Doc’s suggest Kyprolis IV (Carfilzomib). Has anyone here tried it yet? I am curious about how it made you feel going through treatment.

Hi, I just finished a clinical trial of Carfilzomib for newly-diagnosed patients. I did really well on it with practically no change in my daily routine needed, especially for the first four cycles prior to stem cell transplant; it was a little tougher for me after transplant but still not bad (on this trial, I had a further 4 cycles of consolidation chemo following transplant). And my MM was really responsive to it: M-proteins were measured at 56 at diagnosis, after 2 cycles of carfilzomib that had dropped to 5, and down to 1 after the 3rd cycle.

I had carfilzomib plus dexamethasone and thalidomide. I was able to continue working throughout, and even traveling for my work when it fit around the infusion schedule. Pretty much my normal routine during the 4 months of induction chemo. Main complaint was a mild neuropathy in the fingertips of one hand which appeared in cycle 3 and disappeared very quickly when chemo ended for transplant. It did not reappear when I began consolidation chemo 6 weeks after transplant, in consolidation my dose of thalidomide was only 50 mg daily instead of the 200 mg during induction, so I'm inclined to attribute the neuropathy to that, rather than to the carfilzomib. After transplant, the first cycle of consolidation was fine, but from cycle 2 through cycle 4 I found myself losing focus, some days feeling "twitchy", some days a bit shaky, very mild occasional nausea (not even enough to warrant taking meds for it, more like a tickle in the back of the throat). I was still able to work, but grateful that I can do much of my work from home and choose my own hours; there were some days when it would have been tough to be at an office 9-5. My blood values remained within normal ranges throughout except for leukocytes, which never fully recovered from stem cell transplant though during consolidation chemo they did rise somewhat to just below normal range. Hope this helps you, and good luck!

Of course, everyone responds differently, another woman in the same trial told me she had a lot of trouble functioning with carfilzomib during her 4 cycles of induction chemo (feeling shaky, tired, not able to focus) and couldn't work during that period but she found it much easier during the 4 cycles of consolidation chemo after transplant and was able to work (as a neurologist) half time during that period. Exactly opposite my own experience.

I used it and it had no side effects for me. I had to stop Velcade because of neuropathy. I no longer have neuropathy and am going on maintenance therapy next month. I have had 9 cycles 3 with Kyprolis. Then two transplants back to back. It has been nice not doing any chemo cycles but ready to get on with it and bring the Myeloma even more down. Do you have a blog, would like to read your story :>)

Thank you for the info. It is encouraging that it didn’t make you feel too bad. I do not have a blog. My story is on this sight. Just pull up my name!

Hi Tammy,
Your results sound wonderful. I hope it takes a good kick at my MM.
I was DX’d 4 years ago so They are treating me for reoccurring. Sounds like I’ll do just fine with it.
Thank you,

I love all the replys. So much diversity of responses. This is all good information for all of us. I am sure I will need to know this for myself in the future.
Also I have been under treatment with a for profit cancer center in conjunction with
Pennstate university. It has been fantastic
Except for some confusion cencerning invoices. Peace and good health to all. May help come to all who are in need.

I am interested in your neurologist friend. A friend request was sent so I can ask you a few questions privately.
Hope to hear from you soon!


Hello! We were busy all weekend but now, I have a little time for discussion…
When were you diagnosed? What number is your M spike now? Our treatments seem to be similar other than transplant. I had only one. Now, it has been 4 years and 2 months sine this trip started for me. It sounds like you have gone through a lot in a short time frame.

God bless you.

I did it for about 4 cycles prior to my 1st transplant because Velcade caused too much neuropathy. I had NO issues with it. Now, two transplants later I started on maintenance, again with Kyprolis and 5 mg of Revlimid. The Kyprolis is done two days in a row every other week. It is a pain in the butt to have the IV put in and go the the hospital for it 4 times a month, but if it shows good results it will be well worth it :>) Hope this helps :>)

Thank you for sharing. I have not heard anything “bad” about this treatment. Everyone seems to tolerate it pretty good. Treatment starts on the 29th for me.
Hoping for the best!

Good luck Karla, will be thinking of you on the 29th. Haven't forgotten about the questions for my neurologist friend, just haven't run into her in this last month. Will ask her when I see her, hopefully in a few weeks.

KK said:

Thank you for sharing. I have not heard anything "bad" about this treatment. Everyone seems to tolerate it pretty good. Treatment starts on the 29th for me.
Hoping for the best!

Thanks Tammy! I am glad that you posted…I was thinking that I hadn’t sent the message to you correctly!
My treatment will be 2days in a row per week for 4weeks. Is that how you got it?

Mine was 2 days in a row for 3 weeks, then a week off. That made a 4-week cycle that was repeated 4 times before stem cell transplant, and 4 more cycles after transplant. My MM was super-responsive to it, and I had very few side effects, practically no neuropathy (just a little tingling in tips of 3 fingers which disappeared when treatment ended). Saying prayers that you have a similar experience.

KK said:

Thanks Tammy! I am glad that you posted...I was thinking that I hadn't sent the message to you correctly!
My treatment will be 2days in a row per week for 4weeks. Is that how you got it?