[PeterParticipant]

From Peter, Hi, I am a newcomer to this discussion format. My Wife was diagnosed with Myeloma last summer and has been on CDT until January this year, when following four months clear of Paraprotien in the monthly blood tests our Consultant has recommended my Wife no longer needs the Chemotherapy. But the side effects in coming off chemo appear worse for my Wife than when she was on. After three weeks off Diana is emotionally drained, the slightest action is very hard, she is constantly tired, cannot sleep at night, waking every hour, night sweats and extremely weak.
Has anyone else had similar problems, I would be grateful to hear off any info or experience on withdraw effects and how long does Diana have to put up with this. Thank you.

[eveParticipant]

Hi Peter
You do not mention Diana,s age or back ground of MM,and this is important because the symptoms could be connected to her general health,I think when you come off Chemo you think you will feel better,and it comes as a surprise to find you have all these symptoms,you start thinking,are you in remission.

CTD the dreaded DEX also gives you a lot of energy and a good appetite,My husband went straight from CDT to Velcade,but getting remission,his body did react to coming of Chemo,specially the DEX he came off Chemo before Christmas,sleeping more,feeling sick,body clock mixed up.
After blood test confirming he was ok.We thought the only thing it could be was trying to reduce pain killers,this was making him confused,and because he was off Chemo,and confused he had forgotten to take the rest of his medication,once we got to grips with it,he has had no problems except general aching bones,still has shivers plus twitch legs.

Slim has a light anti depression at night,and from being awake all night he now has a good nights sleep,he had heavy sweating,but that,s now gone plus,he now enjoys the day more.
We go to Kings on Friday,for 1st visit,for SCT.

Getting remission is a bit of an anti climax,you wait to hear the magic word,only to have to come to terms with another learning curve.I would say if your worried go and see your own doctor.Eve

[PeterParticipant]

Peter, Hi Eve, thank you for your E-mail, I am sorry I did not mention Diana's age, Di is a very young 80 year old and from about the middle of 2009 had been getting progressively more tired and finding walking becoming a strain. In a way it was a relief to find the reason for the general deterioration. Thank you again for your message

[brochoParticipant]

Hi Peter and welcome I hope we can reassure you both As Eve said the build up to treatment and the anxiety that goes with it can often leave you feeling a little depressed as well as the physical symptoms once you stop treatment. I am sure your wifes specialist nurse or gp would be able to help, sleeping tablets would help in raising energy levels One of the most annoying symptoms of myeloma is fatigue but I am sure it will get betterin time . I hope your wife begins to feel better soon Best wishes to you both Bridget

[CAZ1Participant]

Hi Peter and Welcome,
I too came off CDT 2 weeks ago and initially felt great, although I had an extra weeks' additional antibiotics to go due to an infection in a healing broken leg between cycle 3 and 4. However I am now feeling much slower,things are becoming a bit of an effort,I'm having difficulty sleeping (I found that I got a decent nights sleep with the Thalidomide, having had a problem with insomnia before starting treatment) and today bizarly have been very tearful,and I don't know where that came from!
I think that it shows that we are all affected differently, and although we get used to the drugs that we have been on, there is going to be some sort of withdrawal effect. However if Diana is suffering from night sweats, and feeling weak my suggestion would be to contact the Consultant or the specialist nurse as they need to know. It may not be anything unusual as it sounds as though she was on CTD longer than me so therefore the reaction to stopping treatment may be different-but they are the people who give us the drugs and have responsibility for our care!
Good luck, and say Hi to Diana from a fellow sufferer
Carol

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