[NeilParticipant]

I was daiagnosed with MM in Feb 2013. Completed the Induction Chemo under this trial(Revlimid)and SCT finished in Early July. Have now almost fully recovered and feel well. Have been randomised on trial for maintenance with Revlimid (lower dose of 10mg) and 300mg of Vorinostat. Although I tolerated the Revlimid reasonably well I am concerned that starting this new treatment may give me side effects. It is important that I retain my strength and current "healthy feel" as I am now faced with caring for my wife who has recently relapsed with brain lymphoma. So I am considering not continuing with the trial but opting for no maintenance.

If anyone using the above maintenance treatment can give me advice about how they feel on it I would be most grateful.
Many thanks,
Neil.

[phil47Participant]

Hi Neil,
I suggest you take a look at the thread posted by Nerys on the General section under the heading "Myeloma XI trial next step" (or similar). I'm back on 10mg Rev and 200mg Vor with no side effects and Vor will increase to 300mg next cycle all being well. It is a dilemma and its different for each of us but in my case, my Myeloma seems quite aggressive. At diagnosis my pp was 73 and BMB >90% and although CTD got pp down to 6.4 it began to rise immediately once CTD finished and had doubled by harvest time. It started to rise again in June (9 months post SCT) having remained stable on full maintenance treatment for a few months, and now maintenance is back early impressions are that it is stabilising again so in my case it's worthwhile but I think there are a number of things to consider. If its side effects you are worried about, I had none that affected me in terms of how I actually felt but I did have episodes of neutropenia but the that has been a problem since my SCT irrespective of whether ive been on treatment or not.
All the best with whatever you decide
Phil

[DavehoganParticipant]

Hi Im in a similar posisition do i , dont i ?
Have been offered Lenalidomide or Lenalidomide with Bortezomib
Are there any side effects , i as you cannot afford side effects im enjoying life ….
Any advice much appreciated
Im told by my specialist "every one does it" ….

Thank you

[NeilParticipant]

Hi Dave,
Difficult isn't it? I am in very good partial remission at the moment my bone marrow being 2% and paraproteins 1. The computer randomisation process could equally well have put me on no maintenance then I wouldn't have had to even think about making a decision!!

Its great not being on tablets at the moment but I do wonder if continuing maintenance with the trial would have any benefit to myself but no one can give answers to this question until the trials have finished. I also wonder if at some point I may regret not continuing with the trial if subsequent benefits are found. One other thought I have is to start the maintenance but stop it if I have reactions. My consultant tells me that if and when the myeloma returns I would not be treated with Revlimid anyway – they would use Velcrade.

All very difficult, particularly in my current situation where I need to be as fit and healthy as possible.
Good luck with your decision.
Neil.

[adamsp41Participant]

Hi Neil…briefly I had my SCT in Jan 2011 and was randomised for X1 trial…but …gradually the Revlimid took its toll and from starting at 25mg per day I ended up on 5mg daily…my liver could not cope and have been taken off Revlimid whist remaining on the trial …but to answer your question..I always felt "ok" whilst on the trial…but since coming off (18 weeks now) my wife says I am a different man..I am not as lethargic or tired as before,I must say I have not noticed this but "looking in as my wife does " opened a different view on the matter. I am more confident with going on holiday and socialising, due to my bloods improving significantly …the problem with this disease is that everyone has different feelings and reactions to this bag of poo-poo we have to cope with…hope you find your happy medium and things pan out for you both as well as possible…stay safe..Phil

[eveParticipant]

Hi Neil

As you had CDR first time round,it should make your decision easier,people who had CDT,and then are offered Revilimid as maintenance ,will not be able to have it as a treatment,so this will not apply to you.

You will still have to go to clinic for Zometa,so again this will not be an added journey,Revilimid has effected Slims body,but he is on third line treatment and like Phil,it starts progressing as soon as treatment stops or as in the case of CDT does not work at all.we are waiting on BMB results to see if CDR is working.

It is a hard decision given your wife's illness,but the fitter you stay,the better you can care for your wife,as you say you could start it,and if you have problems come off it,or your consultant could remove you from the trials if there is a problem,it will not go against you for any future trials,you just have to be eligible for there criteria .

Were,s that crystal ball when we need it.Eve

[SarahJaneParticipant]

Hi Neil, did you decide to go for the maintenance? If so how has it been? My treatment has been almost the same as you did 5 cycles of RDC, then SCT in July. PP down to less than 1, decided to let the fruit machine make the choice for maintenance and today collected my REV and Vorinistat, very nervous about the latter, as on REV I didn't do too badly. My hospital hasn't got many on this combination so it's hard to gauge what it will be like,but as we know with all treatment everyone is different.
Best wishes Sarah Jane

[NeilParticipant]

Hi Sarah Jane,
Decided to go on the maintenance and am now 20 days in. I am on 10mg
Revlimid once a day at night for 21 days, 3 x 100mg Vorinostat taken with
meals on days 1-7 and 15-21 and 75mg aspirin dispersible tablets taken once
per day. No other tablets such as anti-sickness etc. So far I have tolerated reasonably well and the only really noticeable side effects have been alteration in taste, dry mouth (sucking mints helps a lot) and some dry skin on my face. I have not yet noticed any other serious symptoms such as becoming more tired although this week I felt that my stomach was a little upset but that could have been the curry I had eaten!

Like you I tolerated revlimid during the induction phase quite well and was
worried about the Vorinostat. If the side effects get worse in the future I have the option of stopping and can say I least I tried!
My next review with the consultants is on the 18th Nov so won't know effects on my bloods etc until then. Will let you know how I get on – as we know everyone responds differently!
Best wishes,
Neil.

[SarahJaneParticipant]

Glad to hear you are doing well on the maintenance trial. I am on the same meds with exception of aspirin. Found this interesting as I am paranoid about dvt, plus I was hoping to fly at new year, but all the literature said no aspirin with voronistat? If I can take it it would make me feel better especially with flying.

So far so good, but I've only taken day 4 pills. Have felt odd, but it's been a while since I took my cycles of pill, bit of dizziness or is this anxiety and odd tummy but had curry too! Will
Be intesting to see how the non-voronostat weeks are. Then I can get back to work, had end of nov in mind
But wanted to see how I faired on trial. I'm at clinic 6 Dec so will also be interested on bloods, had noticed last 2 months platelets were going down a bit, everything else in range though.

Fingers crossed you continue well
My hospital only has a couple of people on these meds so its nice to 'chat' to another

Sarah Jane

[Author]

Posts