[susieParticipant]

Hi All

Has anyone on the Myeloma X1 trial chosen to go on the maintenance ? If so which were you randomised to and how did it affect you.

Hope you’re all doing well

Best wishes

susie

[tonyfParticipant]

Morning Susie, I was diagnosed three years ago, went onto the myeloma XI trial, had a stem cell transplant two years ago but chose not to go on any maintenance. So after transplant my pp’s were just below 2 after 26 months they are at 6. I had just one setback over the 26 months with food poisoning but other than that no drugs other than three monthly Zometa infusion. Consultant is choosing a watch and wait before deciding when to say that I have relapsed.
Hope that helps
Regards
Tony F

[susieParticipant]

Hi Tony, Thanks for your reply. I’ve just noticed iv somehow put my post under the wrong section. Don’t know how I did that.
I didn’t have SCT and was put on the non intensive pathway of the trial. A SCT was never discussed with me although I don’t know I would have opted for it.
I too am having Zometa infusion every 4 weeks. My last PP’s were not measurable as it was too narrow to measure. I’m so pleased as it was 63 when I started treatment. I’m waiting for results of a BMB I had a few weeks ago.
I hope you remain in remission for some time yet.
Best wishes
susie

[MrsLParticipant]

Hi Susie,

I was on the Myeloma XI trial, the incentive arm, and the RCD brought my pp down from 66 to 2. I then had the SCT in May 2014 which brought my pp down to 1 but I was disappointed that I was not selected for maintenance. In November my pp was up to 8 and relapse was confirmed. I will never know if maintenance would have prolonged remission but given the choice I think I would have tried it.

Linda

[susieParticipant]

Hi Linda

I’m so sorry you have relapsed. What treatment are you going on now? I wish you the best. This disease is the pits isn’t it.

Best Wishes

susie

[Ang287Participant]

Hi
My husband is on the Myeloma XI trial and after SCT a year ago is soon to start his 7th month of maintenance treatment. His maintenance is Revlamid and another drug which I have forgotten the name of. He has one week per month on no treatment but the other 3 weeks are not so good and generally he doesn’t feel as good as when he was on no treatment prior to being randomised for maintenance. We would have preferred no maintenance as he felt a lot more normal when on nothing and now it is a constant reminder of his myeloma. However, he wants to be on the trial and hopefully this will help people in the future and if it prolongs the disease coming back then it has got to be worth it all things considered.
Angela

[susieParticipant]

Hello Angela

Thanks so much for your reply. I’ve been off treatment for about 6/7 weeks and I’m still recovering from treatment. Am I right from your post your hubby was about 6 months before he started maintenance ? What strength of Revlimid and Varinostat is he on ?

I just can’t make my mind up as to whether to agree to it or not. I just wish there was more proof that it did extend time of remission.

Best wishes

susie

[CarolsymonsParticipant]

In my opinion it is an ongoing dilemma. Do we opt for quality of life or quantity? Here in Australia maintenance is not an option but I am happy to be drug free. Whether it is the right decision or not only time will tell, but I have just passed 14 months in complete remission after SCT. Next specialist appointment on Thursday. My week waiting to see the specialist (which is every 6 weeks now) I refer to as being on “death row!” I know I shouldn’t think that way and it is not being positive as everyone tells you to be, but it is just how I feel waiting, waiting for the axe to fall!

Carol

[pollyParticipant]

Hi

I have been a member of this forum for some time although I don’t post often I like to keep up to date with other members journey’s and overall I have shared the good the bad and the sad with you all. I have done the Myeloma X1 the chemo the SCT and all that jazz with the fallout of the before and after side effects I have noted people on here go for maintenance only to relapse within twelve months others no maintenance and still stable four years down the line and visa versa as Carol said it’s a dilemma and very individual in my case I opted for no maintenance as it made no promises and is not conclusive and therefore I did not see any real reasons to subjecting my battered body to ongoing drugs even though I did not achieve a complete response, but at the time I felt it was more important to regroup my energies and grow stronger and keep the drugs in my back pocket for the next battle but like Carol I feel it’s jekyll and hide presence and at every three monthly appointment I wonder if this is it but so far seventeen months later I am still stable l don’t regret my decision however I must stress this is only in my case and if your myeloma is more aggressive then maintenance treatment maybe the way forward for you in keeping a foot on its nasty little head.

[Ang287Participant]

Hi Susie
Graham is on Revlamid (Lenalidomide) 10 mg on days 1-21 out of 28. He also takes Vorinostat 100 mg on days 1-7 and days 15-21 of 28. He was transferred back to our local hospital 100 days after SCT and it was in October 2014 that he was randomised and then started his maintenance treatment. Until then we just assumed he had been randomised and they had already decided on no maintenance. After he started maintenance he had 4 periods of infections which have needed four lots of antibiotics over the winter and maybe the maintenance treatments are having an affect on his neutrophils which have gone lower but time will tell and I suppose that’s what trials are all about. Graham was diagnosed at stage 3 with spine fractures and he has no pain now and he is now trying to increase his energy levels. It is now week 4 and this is his best week of the month as he takes no tablets on week 4. Given the choice again once randomised Graham would still agree to go on the maintenance just in case this does improve the length of his remission but if the infections had carried on then you just have to weigh up quality x quantity time.
Best wishes, Angela x

[susieParticipant]

Thanks Angela and Carol.

From what I’m hearing so far I think I’m beginning to err on not having maintenance. I’m not having SCT and it seems most of you that have chosen to go on maintenance have had the transplant. Whether that makes a difference I don’t know. If it was certain it would lengthen remission it would be so much easier to say yes.

Thanks again

susie

[fergie20Participant]

I have been reading the forum for a while now. I have just signed in in order that I can reply to this post. I am currently taking course no 48  of Revlimid maintenance. During most of that time  my PP’s have been in un-measurable category.  I agree that I have more energy on the week I am off the tablets and add that it is even more noticeable on the odd occasion that  I have had longer off  the tablets. I had my SCT just before Christmas 2010 and was randomised to go on the tablet soon after that date. I can recommend them but add every treatment has some side effects or disadvantages.

[fergie20Participant]

Is this some Spam that we don’t want on this web site? That’s  good  Spam seems to have gone now

• This reply was modified 9 years, 7 months ago by  fergie20.

[amandaParticipant]

to jan Jordon

I noticed an email in my inbox but cant find your reply on the forum.  Thank you for your reply.  my side effects of trembling and shaking have calmed down and seem a little better although still there they are now bearable.  I don’t have tingling in my hands and feet either so I feel pretty lucky.  I am still like an old woman though which has hit me hard being that I was very active.  I seem to do a little housework then have to sit or lie down and its very much an effort as every thing aches and legs are heavy .  Muscles seem weak.  Any way I am on the last cycle now of this regime and I hoping that its bought the level down enough to go ahead with the Stem Transplant..  To be honest I am not really looking forward to that prospect but it seems the only option,  to try to get this creature out of control, that has completely taken me over.  I have kidney failure , down to  6% so its not going to be plain sailing but I am up for it and going to give it my best shot, like I have been doing from day one.  Hope that you are getting on ok with your treatment not quite sure what you have had and done up till now ,  please keep in touch.  I don’t look here every day so I lost contact but I will do my best to keep up .  Sometimes I just have to give in and go to bed early.  As I am at the hospital 4 – 5 days a week and they are long days too, so it does get very tiring fitting in work and all the usual every day things.  Good luck, hope you notice this bye for now, Amanda.

[bernardParticipant]

Hi all

my consultant briefly talked about maintenance but we quickly decided against it. I am not on any trial (I wasn’t offered it) but like others here, I wanted to get off the drugs and try and lead a normal life. I had a SCT in February and was back to work by the beginning of April mice had the odd chest infection but otherwise ok. One of the reasons I didn’t want maintenance was that I got bad neuropathy from Thalidomide and the maintenance drug discusses was likely to add to this. The neuropathy keeps me up at night. I did take Pregrabalin for this but I reacted with severe itching so. Mae off that.

It it is always a balance between the benefit of drugs and the impact of side effects on your quality of life. As someone else said on here, quality v quantity of life.

Now, has anyone got any good suggestions for insomnia?

[Author]

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