[newbieParticipant]

Hi, I'm new to this forum and would appreciate some advice on the Velcade drug and its common side effects.

My father was diagnosed with MM last year, 2011 and initially started on the Myeloma trial (RCD). After 6 months of taking these drugs, his pp levels dropped to under 5 and he seemed to be doing well, depsite some aches and pains. However, a few months ago he developed plasmocytoma in his leg and was admitted into hospital with not only that but kindey damage. He has now just began his 1st cycle of Velcade/dex. He had no major side effects when on the RCD, so we were hoping Velcade would be fairly straightforward, however he is extremely fatigued after his first dose of Velcade and seems to have lost his appetite.

Can anyone share their experiences of Velcade?

[jillsParticipant]

Hi newbie,

Sorry to hear your Dad has had a relapse. My Mum has just finished four cycles of Velcade with dex after she had a relapse. First, just to say that the treatment has worked well and Mum is now back in plateau with pp levels reduced and stable so off treatment for a while.

Mum didn't suffer too much with the Velcade, but she was quite depressed at the start of the treatment, I think this was due to relapsing and having to face more drugs. Could this be the problem with your Dad? – depression can result in fatigue and loss of appetite. Is he having the Velcade subcutaneously – Mum had this and it seems to have less side effect than the intravenous route.

The dex was the worst bit for Mum, it did make her quite confused and weepy. I have really noticed how much more cheerful and lively she is now the treatment has finished.

All the best,

Jill

[newbieParticipant]

Hi Jill

Thanks for your reply.

Good news about your mum. I guess we are just at the very early stages of treatment so will take to adjust to the new drugs. He is having velcade sub, and I'v heard it is the better option to take. As well as the tiredness, my dad has also suffered breathlessness and a bit of eye pain, which I've heard are also common side effects. We had no problem with the RCD last year so these side effects are all new to us and we are trying to find ways of helping him through them.

What treatment was your mum on before?

[tomParticipant]

Hi Newbie

I cant add to this one as i haven't had Velcade, but wish your dad well in his road to remission.

Tom "Onwards and Upwards"

[ilovemymumParticipant]

Hi Newbie
My name is Rachael and its my mum who has mm. My mum is having velcade as a first treatment as she is 72 there is no talk of sct so its just going to be managed through the drug route. The first cycle of mums velcade (subcut) was the hardest she suffered with really bad sickness and no appetite and a funny taste in her mouth. Since then she has been really well with it, I think because she had bad kidney function at the beginning that was what was making her so sick. As the velcade is now working she has her appetite back and the funny taste went away after the first cycle. Mum has just finished cycle 4 and has two cycles left, her paraprotein levels have dropped to 7 already and her kidneys have gone back to normal range (when admitted she was in kidney failure, 20% function apparantly) The velcade/dex is really improving everything and apart from needing an afternoon nap my mum is coping very well infact everything feels quite normal at the moment they have even gone away this week (the consultant said they didn't have to cancel their holiday and put back mums 4th cycle by a week)I hope this helps and answers a few questions for you and I hope your dad copes aswell with the velcade/dex as my mum has.
Lots of love
Rachael

[les81Participant]

i am on velcade sub cut, friday i start forth cycle and can say i have never had a problem with it. i take another chemo drug cyclo every friday and thats the one that knocks me out. they are talking about sct with me but being on dyalisis not sure how its going to work. going to see consultant on thursday so hope to find out a bit more on whats going on.
chin up Les

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