[mandyphillips41Participant]

Hi Everyone

I have finished my treatment, i.e had my stem cell transplant in May 2013 and I have still had quite a few problems since. The pins & needles in my hands turned out to be Carpel Tunnel syndrome for which I had an operation last Monday and touch wood it seemed to have sorted this out – the surgeon did say that this could have been caused by the Lenalidomide tablets which I took at the beginning during the 5 cycles that i had. Then again it could just be that I would have had this problem anyway (Who really knows)
But, I am due to go and see my oncologist next week and he will want to know if I have decided to stay on the clinical trials and continue with the Lenalidomide as part of the maintenance programme or not.
I am now doubting this because if this was the cause of the carpel tunnel then NO I will not be continuing on this as I am frightened that if it has already caused me to have one medical condition then what else could it do and to be honest I have not (probably like a lot of others) had an easy time of it. I have had a stay in hospital each month since I was diagnosed with one problem or the other I was even in for 12 days all over Christmas and I still feel far from well. The pain that I have in the legs, knees and ankles in the mornings is unbearable for at least 2 – 3 hours (I have started back at work and have to be in for 9am, this means I would have to up for 6am just to be able to move freely and in time to be there) then I am able to move about pretty normally then it starts again in the early evening – Does anybody else experience this? and can anyone give me any advice on the maintenance program, is there an alternative medicine for this. I really would appreciate any advice available as I am so fed up of feeling poorly
Regards
Mandy xxx

[eveParticipant]

Hi Mandy

Have you. Had any explanation why you are having so many problems with your legs?? Also have you had a look at the Myeloma Beacon site,concerning maintenance,being America they have a lot more imput to questions???

I think you have to do your homework on maintenance,in Slims case it would not have made any difference,as it was back after 6 months.:-(
Good luck Eve

[SIMSParticipant]

Hi
Check your red blood count, and if its anemia, this can cause symptoms like that,I think its called pernitus anemia, probally spelt wrong..hard to walk around at the beginning gets easier through out the day, however may have nothing to do with it at all, but this type of amemia, also causes pins and needles in feet and hands and makes feet initially difficult to stand on. Its a stab in the dark,but if your like this in the morning then it gets better , if your on your feet all day , you will get bad legs at night… may be on your legs too much?

[mandyphillips41Participant]

Hi Sims and thanks for the reply. I think is is definitely something I can mention to my specialist, I am seeing him on Tuesday and I think any input is a positive thing.

Good luck & take care

Mandy x

[TinaPParticipant]

I have been on Revlimid for 18 cycles as maintenance. 3 weeks taking 1 tablet at
night, then 1 week with no tablet.
Then after a blood test,I go and see my haematologist for the results.

I was allergic to the full dose of 10mg and came out in a horrible red raised
rash.

So my dose was halved and I take anti-histamine tabs 3 times a day throughout
the 4 weeks.

So far, no sign of PPs and my bloods are ok.

Tina

[ozzyParticipant]

Hi
Pauls been on maintenance Rev this is his second month, He is on 15 mg daily 21 days and 7 days off. He is taking it along with soluble aspirin for the blood clots. So far hes ok. Hes had 6 courses of CRD feb – July of 25 mg so his system was used to it. He hasn’t had any problems so far except very dry skin. He will be on it as long as his body responds.
Good luck and hope you feel better soon.
Gayle

[Author]

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