[hlParticipant]

Hi, my husband’s myeloma is back and he was asked to join the MUK five trial.  He was randomly selected for the Cyclosphomene, Velcade and Dexamethosone (CVD) group and has completed his first cycle.  I don’t think this combination is new, but he didn’t get selected for the carfilzomib.  I’d like to know how folks are coping with this group of meds?  My husband couldn’t sleep, he was hyper all the time, bloated stomach with severe swelling to ankles and feet, with skin breaks and bruising.  I put this down to the dexamethasone and question whether he should continue on this regime.

[caroledParticipant]

Hi – My husband is on the same regime and is just about to finish his fourth cycle, out of six. He has a Velcade injection every week, a Zometa intravenous every month and cyclophosphamide every day and dexamethasone two days a week. The first night of taking dex he has trouble sleeping and his voice goes “croaky” for 24 hours. He also has a voracious appetite due to the dex and as a result has put on weight (looks like he has swallowed a melon whole!). Had some slight swelling of one ankle initially but this seems to have gone now. Overall, he is coping well but I believe different consultants provide different regimes using the same three chemicals so this could affect an individual’s reaction to the chemo.

[hlParticipant]

Hi Carole, you did make me laugh!  Your description of swallowing a melon whole is spot on.  Couldn’t believe it; one day a shirt fitted and another day it didn’t.   My husband, John, has just come out of hospital following admission for an infection and starts the second cycle next week.  They gave him an extra week break because of the side effects, and they said they’d jiggle the drugs a bit, so, fingers crossed all goes well and we can avoid the drastic side affects we had last time.   Thanks for your input.  H

[petesilverParticipant]

Hi hl

I was on that regime for eight months, side effects are always different funny but now I can’t remember any but the main I had 4 years remission which i thought was amazing, but since then i have been on lenalidimide on and off

I can’t see that this is a new trial as I had it over six years ago, still i suppose all hospital are different.

I hope your husband improves soon some side effects of these drugs are very unpleasant and not everyone can tolerate some of them.

all the best

Peter

 

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