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Stage 3 Multiple Myeloma

15 Oct 2016 23:28

I was diagnosed 2 years ago at the age of 51 with stage 3 Multiple Myeloma.  I had 5 rounds of treatment on a trial with carfilzomib followed by a stem cell transplant.  I was pretty sick with transplant complications followed by 9 months of reactive arthritis in all my joints amongst lots of other issues.  It's taken me a long time to get over this transplant and I'm only now 17 months on beginning to feel anywhere near normal.  

Anyway recently I've been worrying about when it's going to come back.  It's not something I've thought about until recently when I've been feeling better. I don't want to spend my remission period wasting time worrying instead of getting on with life and wondered if anybody had any tips on how to get past this.

Stage 3 Multiple Myeloma

16 Oct 2016 11:44 in response to DMB
you hi I have myeloma had stem cell transplant in 2012 which was the most horrific thing I have ever been through. I am in a trial for maintenance treatment but has not been easy. I have had pneumonia quite a few times and been admitted into hospital with infections on numerous occassion. I thought that after stem cell I would get back to some normality but that really has not happened. The treatment I am on has many side effects and I seem to of encountered them all . I not only have to deal with myeloma but also been diagnosed with bronchiectisis which is chronic lung decease. I do try to get on with my life but the pain and infections I get won't let me . I would just wish I could have a break . I am now 60 and was diagnosed 4 years ago and does not get any easier .

Stage 3 Multiple Myeloma

17 Oct 2016 00:03 in response to Ronnie17

Hi, thanks for your reply.  It sounds as if you're  still in remission which is great after 4 years.  Unfortunately I didn't get the maintainence drug in the trial and its doubling remission periods.  I think that's part of my worry because on average it's two years remission and I'll be up against that very soon. 

Im sorry to hear you're having such a tough time of it.  Although I did have a rough time during transplant and for a while after I've not had the problems you're experiencing.  

I used to be a big trainer, run 7/8 miles 3/4 times per week plus long walks and some weights until a few years ago and was really hoping that I could get back to that but really struggling with it.  I'm still very weak and tired although I have recently returned to working full time in the office instead of shorter hours at home.  So I suppose I am going on the right direction.

do you worry about the myeloma returning?