[applewitchParticipant]

Iam feeling very short of breath , getting various aches & pains & low in mood , also very grumpy according to my wife ! Currently taking part in the Myloma 11 trial .I wonder if anyone else is having the same experiences ? It would be gret to hear how other people are feeling .

[tonyfParticipant]

Hi, although it was a couple of years ago when I was on the myeloma XI trials, I felt exactly the same as you, but it did vary through the cycle, I put the blame on the treatment not the myeloma.i know it’s easier said than done but I tried to rise above it! Going walking helped!
If it’s any consolation it won’t last, the treatment bought my pp’s down from 44 to 17, had a SCT two years ago, and have been drug free since then, feel good, though according to my wife I’m still a grumpy whotsit!!!!!!!!!
Haha
Regards
Tony F

[jeff605Participant]

Hi, interesting that you are getting short of breath, I was playing with my old car at the weekend and noticed that I was getting very puffed if I bent down. Are you on Dex ? This causes a very definite cycle with a couple of very down days every week, once I worked out what was causing it I found I could deal with it. Unfortunately I can’t walk very far to help work through it, but I do find keeping gently busy helps. Jeff

[derekParticipant]

Hi Applewich,

I WAS diagnosed with Agresive Myleloma Lukemia on the 2nd F eb 2015

and in the last 2 weeks If ound that my breathing became very bad to the extent that the hospital sujested I had oxygen at home if I bend down to put on my shoes my breathing gets worse I then got  a cold which realy tought me a lesson but now that has gone and I am feeling much better as I have  suffered with Asthma for many years this is totaly different its more like phumoni

I have had 2 blood transfusions in the last 2 weeks and I think that this helps with breathing

This is the first time I have been on any forum etc I was told about this one last week

Regarding pain in legs I get this often and my legs and hands are getting somewhat weaker
I get lots of severe cramp in my hands feet and legs

I read that Jeff gets short of breath when doing simple things and that he finds a little work helps I
think that a
Little exercise goes a long way to slowly improve matters.If there is anyone else reading this message who has got the same as myself I would be very interested in hearing from them

All the best folks Derek Wilde

• This reply was modified 9 years, 9 months ago by  derek.

[Ang287Participant]

Hi – are you taking Revlimid as part of initial treatment or as maintenance. My husband is taking Revlimid as maintenance along with something else which I can’t remember. He is also on the Myeloma XI trial and was chosen for maintenance while in remission – would have preferred to have been drug free for a while.
Angela

[MrsLParticipant]

Hi,
I was on the Myeloma XI trial last year, on Revlimid, Cyclophosphamide and Dexamethasone. The dex definitely made me grumpy and caused sleeping problems, I also had nights when I was very hot. I was also out of breath because of low red cell counts, not sure if this was a drug side effect or the Myeloma, but was given injections to help with this. Keeping a dairy log helped me work out which days/nights would be good or bad and plan accordingly.
Linda

[Author]

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