This topic contains 10 replies, has 7 voices, and was last updated by 
Helen 12 years, 1 month ago.
I got a phone call today from the Myeloma XI research nurse to arrange a meeting for a 100 day check up from my SCT.
She then mention about going on tablets, 21 days on, a week off then back on again to keep the Myeloma at bay.
She said it was the next stage of the treatment, but nobody mentioned anything like this at the beginning.
Does anyone else know anything about it? Is it normal?
Any help would be appreciated.
Thanks
Etta
Hi etta
I think this is the randomisation element of the myeloma x1 trial. They randomise you to either have maintenance treatment, I think it's lenalidomide, or not to have maintenance treatment and just leave be. I noticed this randomisation element on colins SCT plan when we received it. I think Helen takes a maintenance drug too?
Good luck with your 100 day appointment.
Vicki and Colin x
Hi Etta
Treatments Zolinza or Lenalidomide or no treatment randomised,Slim go t no treatment.They are testing the new drugs as a maintenance treatment. Zolinza has been doing well treating other cancers and it is a prohibiter,no results are available as a maintenance drug as this is first time,Lenalidomide has been in use for some time and there are some results in.Helen can tell you more about them or if you go to Treatment site and look at my posting ZOLINZA there is information from Helen on there.
Hope this is helpful Eve
Hi Etta
Glad you have got through your 100 days post SCT so well. It must be difficult for you to contemplate going back on treatment again. I hope that what folk have contributed is helpful. Are you going to go ahead with it? Presunably you get to give your view.
Best wishes and love.
Mavis x
Hi Mavis
The nurse phoned this morning as I was a bit concerned about starting more treatment,not knowing side effects the tablets will have.my 100 days aren't up until 28 nov and then I go on holiday on the 7 th dec for five weeks so I don't want to start anything until I get back. The nurse said she will send some info to me as the side effects are similar to what I had on thadlimide so a lot to think about.
Etta x
Hi Etta
Well Good Luck for you 100 day post SCT check, I was only on Zometa and nothing else after my SCT so cant add to your post on your new tabs but wish you good luck if you decide to take it on.
Love Tom "Onwards and Upwards" xxx
Hi Etta
How are you doing?
Nice to hear that you are getting away – presumably to see your kids in OZ? My mum has been told she cannot go abroad until she has had all her childhood vaccinations again – which will take us to around April next year. Just wondering, how come your hospital has a different policy? Also, Eve and Slim went on a cruise. Have they mentioned vaccinations to you at all?
Love Ali xx
Hi Etta
Sorry I missed this, bit tired and busy recently, but here is my experience . I've been on myeloma xi trial for nearly 21 months now.
Started feb 2011 on revlimid arm, it took my light chains to 0 in a couple of months and they have remained at 0 since then. 🙂
Had my SCT in August 11 and was randomised to revlimid again at 100 days post SCT. I've had no severe side effects to revlimid other than a loss of taste, fatigue, tummy troubles ie alternating diarrhoea and constipation, which does take some getting used to and recurrent chest infections. As I say, not nice but you can cope with them. In the first couple of months I had no side effects, but because it is a cumulative drug, they came later. I had septic collitis after transplant which took 11 months to resolve and i am catching every cold going but I'm back to work full time now and have been to New Zealand and Venice since transplant. 🙂 I waited 6 months before going in an aeroplane because the recycled air can carry lots of bugs, I thought it would be safer, but probably doesn't make much difference. You have to just go for it and live a lot.
Revlimid maintenance might prevent myeloma coming back as quickly so I thought it was worth a shot, I'm glad I have as I need to stay here for as long as possible, Zolinza has also been added to the trial to see if it works as maintenance as well or better etc, as I say it's a trial nothing is certain and all we can do is give it a whirl. If it works you get to stay on it until it stops working so I'm trying it. If you choose not to go on it when you are randomised you will not be able to go on it in the future if you change your mind. I don't think they will let you delay it either as everyone needs to be starting it around the same time, but you can ask. Make sure you know all about it, but its your choice at the end, if you don't want to try it you don't have to.
Love Helen
Hi Ali,
I mentioned to them early in the year that I was going to Oz, and again last week when I went to see my consultant.
Nobody has mentioned that I have to get any more vaccinations though. In fact he even asked about the flu jab, and I told him that Blackpool (who did the stem cell treatment) mentioned not having live vaccines so he's going to check with them about it.
The only thing he was concerned about was my lack of wig so he told me I had to get one.
All done and sorted now, sporting a nice new hairstyle!
Maybe it's just down to different areas, unless its been a long while since your mum had any?
Hope a your mum is doing ok though.
Love
Etta
Hi Helen,
The nurse is going to send me some paperwork out for me to read through regarding it. She mentioned she would ring the trial research people and find out if required that I could start it when we got back so I will have to wait and see what happens there.
The only thing I find confusing is how they are certain I am going to be picked for the tablets before I go for my 100 day check up. She seemed certain that I would be! My major concern is taking an unknown drug when I'm at the other side of the world with no backup on hand like I would have at home.
I'm going to talk things through with my consultant when we see him early Nov anyway and see what he says, but in the end I have to do what's best for me.
Etta
Hi Etta
I suppose you have a 2 out of 3 chance of tablets being prescribed so it is more rather than less likely, I took revlimid out in New Zealand with no trouble, walked a lot on the aeroplane etc. if you have had thalidomide before, Revlimid is its new brother but has less peripheral neuropathy problems. I took heparin injections for the flight days to prevent DVT as well as daily aspirin while I was there. Zolinza was not available when i went on the maintenance arm of the trial but it seems to be a promising drug. As I said, these drugs are being tested in us newly diagnosed, and tested as maintenance too so there is no guarantee of any future provision of it unless it works really well across the board and becomes mainstream therapy. We just get the chance to take it via the trial and will get it then for as long as it works for us.
The way the trials of maintenance therapy work is to see how well it is tolerated by many, how long the effect lasts, and overall prevention of disease progression and death. In the past there have been trials with interferon and thalidomide, for the majority of people on them there was no appreciable advantage and side effects are plenty, but some people are still on these trials 15-17 years on with reasonable life quality. As there is no way yet of forecasting which of us will relapse and when, maybe we just grasp what is there and hope for the best, I was and still am prepared to stay on it and live in hope that it works for me for a long time. Good luck with your decision, maybe they could start you on a smaller dose than standard?
Love Helen
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