[aerorick]

Run down from Kyprolis, want to take month off

by aerorick on Wed Jul 13, 2016 11:40 pm

Taking Kyprolis (carfilzomib) for the 3 week intravenously. Working well, but runs you down. Asked doctor if I could take month off just to recover, but he feels that would be dangerous in that it might strengthen my resistance to the drug and lower the effectiveness when started again.

Would anyone have experience with this or offer opinion?

Thanks,
Rick

[Rhonda]

Re: Run down from Kyprolis, want to take month off

by Rhonda on Thu Jul 14, 2016 7:13 am

Hi Rick,

I too have been suffering from fatigue while on Kyprolis. I am on a maintenance dose of every other week (not weekly). I lowered the dosage amount to 20 mg (the lowest I can go) rather than stopping completely, which has seemed to help some. My specialist said the other option is to stop completely for a 2-month "holiday" and see what my numbers do. At one point we talked about adding low-dose Revlimid, but I didn't want to add another drug if we don't need to.

What I have found is staying active –i.e. walking, light weight lifting, and just staying busy – seems to help me. Sometimes this is hard if not impossible, but I keep trying

I have heard stopping and starting a drug may effect the drug strength, but I only read it on this site and haven't been told that by my physician. I was on Kyprolis, Revlimid, and dexamethasone (KRD) during induction and was put on just Kyprolis for maintenance, so I did have a 5-month break between treatment and it didn't affect the strength.

This probably hasn't helped you much with your decision, but I wanted to share my story.

Best wishes for a successful outcome.

Rhonda

[Conundrum One]

Re: Run down from Kyprolis, want to take month off

by Conundrum One on Tue Jul 19, 2016 8:54 am

I was switched to Kyprolis at the end of October because Velcade became ineffective. I had a very good response and my lambda light chains (I do not have any M-spike and it was only at 0.1 g/dL at diagnosis) were finally in normal range for more than one cycle with Kyprolis, Revlimid, and dexamethasone (KRD).

April 10 they took me off treatment for a stem cell harvest and my light chains started to rise immediately. I went from 18 to 78 within three weeks. After the harvest, I asked to stay off treatment for another month and my light chains continued to go up. After about 10 weeks off all treatment my light chains were at 253. I am now back on KRD and will know this week if it continues to be effective.

I do notice that since I am back on it I have more fatigue, weakness, and have had other reactions that I did not have during the first 6 months.