[briananParticipant]

Hi

I have recently completed my first round of chemotherapy (VCD initially and then VTD). I have had an excellent response and I’m in remission. I am now being encouraged by my consultant to have a first SCT; tests etc. have indicated that I am eligible for this. However my preference at the moment is not to have an SCT and to have some form of maintenance regime.  The problem is that my consultant tells me that – via the NHS – maintenance can not be offered to patients who are eligible for a first SCT but decline it. (Catch-22!). My consultant did tell me that if I went private, I could have Revlimid for maintenance.

My questions is:  has anyone in my position been offered maintenance via the NHS? (Although Revlimid is perhaps the best option, I believe that other less costly drugs could be suitable.)

Many thanks in advance for any advice that you can give me.

Brian

[sabsParticipant]

Hi Brian,

I believe the only time when you are offered maintenance on the NHS is when you are part of some trial, my significant other is on a trial only cycle two but will either have a sct after the 4th cycle or go onto have a further 4 cycles (randomized as to what group he goes into) and then have 18 months of maintenance. If he was on standard treatment there would be no maintenance option.

[briananParticipant]

Hi Sabs

Many thanks for the information.  What trial is your partner on? Perhaps it is the CARDAMON trial, which I know about?

Brian

[sabsParticipant]

That is correct, that’s the trial he is on, but from what i can gather at least at the UCLH there are 10 different trials going on. Usually they sign you up to them straight away but I have heard of a few people asking to be put on certain trials.

 

 

[peterlParticipant]

The only NHS licensed maintenance treatment is Revlimid.  Unfortunately in a small number of cases Revlimid can have serious side effects, namely on the liver, in a some cases.

Peter

[susantrParticipant]

Hi

I was on the Myeloma XI trial and was randomised to take Revlimid. However, after taking it for only 2 weeks my ALT raised to 146, therefore I was asked to stop taking it.

Sue

[davidainsdaleParticipant]

Hi Brian

Presume that you have investigated the costs of going privately. I may be wrong, but I seem to recall seeing somewhere that the cost of Revlimid was £64 per tablet.

Hope this helps.

David

[reedhammanParticipant]

I decided against SCT two years ago because I was feeling very weak with side effects of Velcade. I then went on to Cyclophosphamide and Dexamethazone which held me for a while and now I am taking Revlimid with Dexamethazone.

It is just maintenance but has brought my paraproteins down from 14 to 9 over the last 5 months. No serious side effects.

I am taking one pill per day for three weeks then one week rest.

John

[Ang287Participant]

My husband is on Revlimid maintenance as part of Myelomz XI trial following his SCT. His Consultant said that what he is taking would probably cost about £3,000 a month !!!!!! We could never have afforded that ans so glad that he is on the trial. I hope you can get some maintenance that would be good for you on the NHS.
Angela

[taffdParticipant]

I mentioned quite early on that I didn’t think I’d handle an STC and it was never mentioned again. Luckily, I achieved complete remission with CTD. No mention was made of any sort of maintenance.

I was also lucky in that, had I had a transplant, I wouldn’t have survived the sepsis that developed from radiation colitis.

[Author]

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