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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Kyprolis, Revlimid & dexamethasone - side effects

by RoseKibit on Wed May 13, 2015 1:16 am

My son, age 45, has multiple myeloma and is on his second course of Kyprolis, Revlimid, and dexamethasone. He is experiencing a severe headache behind one of his eyes. Is this standard?

Also, he has had some of his fingers "lock up" and he was unable to move them for a few minutes. Could this be another side effect?

Any help you can give me will be appreciated. :D

RoseKibit

Re: Kyprolis, Revlimid & dexamethasone - side effects

by mikeb on Wed May 13, 2015 2:18 pm

Hi RoseKibit,

I'm sorry to hear about your son's headache and finger "lock up" problems. I can't comment on the headache, but muscle cramping, like with the finger lock up, is a known side effect of Revlimid.

Awhile back there was a Forum thread about muscle cramps, with lots of people suggesting remedies that have helped them:

"Muscle Cramps" (started March 12, 2012)

In my case, with mild cramping, mustard sometimes helps. With more severe cramping, drinking about a half cup of water and vinegar in equal portions works to unlock things. My myeloma specialist has also had me add magnesium oxide as a supplement, and that seems to have reduced the frequency of cramping incidences. Also, staying hydrated helps too.

Best wishes to your son. I hope his treatments are helping him despite these side effects.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Kyprolis, Revlimid & dexamethasone - side effects

by Rhonda on Wed May 13, 2015 9:31 pm

I have been on Kyprolis, Revlimid and dex since January and have found if they lengthen the time of the Kyprolis infusion, it helps with the side effects. I usually have them administer it over at least 10 minutes. I have read some people request it be administered over a 30 minute period.

I am not sure if this will help, but I do know it helped me with multiple side effects, including head­aches.

I too wish him the best.
Rhonda

Rhonda
Who do you know with myeloma?: myself
When were you/they diagnosed?: September 2014
Age at diagnosis: 54

Re: Kyprolis, Revlimid & dexamethasone - side effects

by Anonymous on Thu May 14, 2015 7:59 am

When I had Kyprolis infusions, they started with 1 liter of saline solution, then the Kyprolis, then another liter of saline. I experienced few side effects, except that the Kyprolis stung a little on the way in.

I also had 7 cycles of Revlimid / Velcade / Decadron (dexamethasone). I had the hand cramps / muscle lockup also, and my nurses were baffled.

Anonymous


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