[Ang287Participant]

Hi
Is anyone on the Myeloma XI trial? My husband Graham had a stem cell transplant in February 2014 and is now in full remission. He was doing well and building his strength up and doing a lot of walking. He was then randomised in September 2014 and is now on maintenance treatment of Revlimid and Vorinostat (Lenolomide). He has just started his 4th month of maintenance treatment.

For most of the first 3 months he has been feeling a lot of cold/flu symptoms and has had a productive cough. He has had 4 lots of antibiotics due to the cough and a lot of mucous in his throat but the antibiotics finished a week ago. Fortunately his throat symptoms have now cleared up. In October he felt a difference with his breathing. He had started singing lessons and could not hold his notes as long. In general he has not felt as well as when he had no medications at all while in remission and I just wondered if there was anyone that has been on this maintenance for a while to see how they are feeling with it. He now feels that following about 10 weeks with the throat infection that he is back to feeling how he did after the SCT and he now needs to build up his walking again and get his strength back but this is the first time he has felt like he can try and get out and start walking again.

Four days before Graham started the maintenance treatment in October he also had his flu and pneumonia vaccinations and maybe this has had something to do with how bad he has been feeling and it is nothing to do with the maintenance treatment.

I just wondered how anyone else was managing on the maintenance treatment who is also on the Myeloma XI trial.

Thanks, Angela

[tonyfParticipant]

Hi, your post is interesting. I am the opposite to your husband. I was on myeloma XI trial, had a SCT two years ago, after long discussions with consultant and trials drug nurse I opted for no maintenance. Have had one infection over those two years, pps never went much below 2.0 and are slowly rising currently at 4.9. No talk of any further treatment yet. Do a two hour cross country walk every day with my dog, go up to the Lakes quite often, walking. Can still fall asleep at the drop of a hat. Took 3 weeks to bring a winter cold under control. I am 70.
Doesn’t help you with your dilemma, just the opposite.
All the best
Tony F

[RobertmauriceParticipant]

Hi Angela
I was on the Myeloma X1 trial and was randomised to the RCD induction treatment which was followed by an SCT. After this I was randomised to the lenalidomide/vorinastat maintenance regimen. However After thinking long and hard I decided against taking it and so I was removed from the trial. My basic reason was that I wanted to be free of drug taking. For a long time I wondered if I had done the wrong thing and discussed it with the research nurse. She told me that evidence was beginning to show of unpleasant side effects from this treatment and vorinostat was no longer being recommended at my hospial, In the event, I began to relapse 18 months later and was sussessfully treated with bortezimib (Velcade)

[Ang287Participant]

Hi Tony and Robert
Thanks for your responses. I can understand totally not wanting to go on the maintenance treatment and both me and Graham were hoping that’s what was decided for him. As everything had worked so well for him this far he decided to git the maintenance a go and will probably give it another 3 months before making decisions to come off it. We thought that if maybe it gives him an extra year of remission (only guessing though) then it would be worth it but nobody really knows and also everybody’s myeloma is different. We are hoping to hear good reports of people being on this maintenance for years and feeling good. I would love a dog and now Graham has given at work thought it would be the perfect time and he could go for lots of walks with it but he has said no so far.
You sound very fit Tony and I have heard that exercise helps with the fatigue so hope Graham can increase his walking. Nice to hear from you too Robert anbd it must be really hard making the decision about treatment and I totally understand your prefernece for no drug taking for a while as when Graham was taking no medications for a couple of months we started to forget about Myeloma and now he has to take medication on a four week cycle and have a blood test at the end of every month (which fits in well at the time of his monthly Zometa). If this doesn’t do Graham any good hopefully it may make a difference to treatment options in the future.
Best wishes to you both for 2015 🙂

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