[petriceParticipant]

I have had myeloma for six years and my oncologist has put me on dexamethasoneI for six months and lenalidomide for a long period which could be for life.Has anyone else had this combination as my oncologist is so pleased with the results we are getting but I am suffering side effects which is effecting my feet, legs, hand cramps breathlessness I have trouble walking ,so if anyone has used this medication I would be grateful to hear from them I am 66years old

[jeff605Participant]

Margaret, I have been – cycle 23 – of Dex and Revlimid for nearly two years. The symptoms you have described about sums up mine! Get all of those to varying degrees. This morning I can just about support myself standing up and walking, this will last for an hour or two. Breathless is getting worse, any activity causes it now.Interesting that you get hand cramps,I wasn’t sure if this was a side effect. The big Plus is, as with you, it’s working it’s magic
I am 77.
Hope that it’s not too distressing and limiting, best wishes, Jeff

[penniechapmanParticipant]

Hi Margaret, my husband Andy was diagnosed 16 years ago with myeloma. 4 years ago he was put on lenolidomide and steroids after a relapse. He got cramp in his hands and just worked them more. Very unfortunately he developed diverticulitis and was rushed into hospital for a colostomy. All treatment for myeloma was stopped and he recovered well, albeit with his ‘stan bag’. Last summer he had another relapse of the disease and is now on lenolidomide 5mg only and is doing really well. He has a monthly infusion of zolodronic acid. He’s 76 and keeps himself fit with regular walking. He does have neuropathy in his feet so has to be careful when getting into a shower.
The consultant suggests that he could be on this treatment long term. Since Andy was diagnosed the research into myeloma has been remarkable and each time he’s relapsed there seems to be some new treatment. Well done MUK.
Pennie

[jeff605Participant]

Wow Pennie, what a breath of fresh air at just the right time for me. Andie’s story is so similar to mine, except I am only 5 years down the line as against Andie’s 16, even to an emergency op resulting in an ileostomy! On the same treatment too. I am in a bit of a down just now mainly due to a painful back problem, and this post has cheered me up no end. Thanks for sharing your good news,wishing Andie continued good progress Jeff

[lennieharrisParticipant]

I was diagnosed with AL Amyloidosis in May this year and amongst other medication am on Lenalidomide 1 a day every day. I am experiencing lack of taste when I eat. I look forward to having a meal but have very little taste when I start to eat a bit like I have burnt my tongue. Anyone experienced this and if so any suggestions to help?

Lennie

[jeff605Participant]

Hi Lennie, I recognise these symptoms only too well.I have been on Revlimid for some 2 years, and the lack of taste is a real downer, together with as you describe a burnt feel to the tongue. I think about what I would like to eat, sit down to it and don’t want it, usually steuggle through most of it. Thank goodness puddings aren’t affected so much!! Don’t think there is much we can do about it, to make matters worse I can’t eat strongly spiced foods! The important thing is to eat regular meals, and not skip thwm- I find lunch is the most difficult one to deal with
Good luck with the treatment, I hope it works as well for you as it has for me Jeff

[susieParticipant]

I was on the Myeloma X1 trial on Revlimid. From about cycle 3, I had tongue problems. The right side of my tongue felt as though I was recovering from a dental anesthetic. It was that feeling you get when a local anesthetic is wearing off. My consultant thought it rather amusing ! I didn’t and I thought it could be a form of neuropathy. It went when I finished treatment. I also had bad leg cramps and still do get it though not as badly.

Best wishes

susie

[Author]

Posts