[AmelieParticipant]

I know I have written about this several times before, but it keeps popping up in my mind and now there was a new article on myelomabeacon.org

http://www.myelomabeacon.com/news/2010/12/10/studies-support-revlimid-lenalidomide-maintenance-therapy-for-multiple-myeloma-patients-ash-2010/

As far as I have understood the doctors don't completely agree whether it is a good idea or not to give this maintenance therapy.
Has anyone seen any recent arguments against? Or have any of you experience with the maintenance?

Revlimid is so terribly expensive so I am always left with a feeling that they don't prescribe it because of the costs. :'-(

[GayeParticipant]

Dear Amelie

If you look at the News section of this website you will see information coming from ASH in America after their recent conference in Florida. It will also tell you that Velcade has been found not to increase the length of remission after SCT. It does not mention Revlimid.

Here in the UK Revlimid is not approved for use as first line therapy due to the high cost but is approved after at least two relapses. However, I have a feeling that I have seen on here that Revlimid has been used occasionally outside these guidelines but I am not sure in which circumstances.

For everybody else there is some very interesting news on this website from ASH about new combos emerging in the States which I would recommend reading. Work is going on all the time so as our cheerleader Tom keeps reminding us 'Onwards and Upwards'.

Love, Gaye x

[MariParticipant]

Thank you Amelie, I am very interested in this, I think there is a trial going on with this at the moment, see a recent post from Gill Pearce following her SCT. My husband has just had his SCT but as his paraproteins went up in the time between finishing his CDT and having the transplant his consultant said he may need some maintenance treatment. He was talking about 3 to 6 months on thalidomide but was not totally convinced that this was always a good thing because of the way myeloma develops resistance to some drugs and also the toxicity of thalidomide causing side effects. Its a difficult one to be sure,

Love Mari xx

[AmelieParticipant]

Thanks for your replies!
Mari as far as I have understood Revlimid has less side effects than Thalidomid, so maybe it would be worth fighting a bit for it? When given as maintenance it is only a low dose.

Love,
Amelie

[MariParticipant]

We are off to see the consultant for Steve's three month check tomorrow so i will report back after that,

Mari x

[MinParticipant]

Amelie
I spoke to Peters myloma nurse specialist and she said that Revlamid when given is taken continuously after it has worked its magic as a maintenance it is not give as simply maintenance but is a continuous treatment. A lower dose being given as maintenance after it has been used to fight the return of disease. She went on to say it has a much better response than other medications. It is on tablet form taken for three weeks with one week off.
MIn

[PerkymiteParticipant]

Very interesting Amelie, it does I think reflect some movement forward and a line for the youngsters amongst us to grasp.

kindest regards

David

[AmelieParticipant]

Hi everyone,
John went to see his doctor this week and asked about the Revlimid maintenance. The doctor said he is monitoring the development closely but for the time being he doesn't recommend it to patients since it has too many negative side effects, which a new American trial had proved.

I don't understand that, because I always saw Revlimid being described as "mild" compared to thalidomide, and in any case it is only given in a very low dose when used as maintenance.

Has anyone an idea about that trial or what serious side effects it could course?

Mari, I am looking forward to hearing what Stephen's consultant said.

Love,
Amelie

[strictlymyelomaParticipant]

hello min
since diagnoses i have been on a trial with Revlimid (Lenalidomide)i understand that the dosage is low but results appear to be lowering of my PP which is what it is intended for, as i will possibly be have a first SCT in a couple of months time, Revlimid a diritative of Thalidamild as a first line of attack against MM no serious side effects too note, apart from an occational red face and nose,i cannot comment on Thalidamide as i havn,t had it.

[strictlymyelomaParticipant]

RE: Revlimid Maintenance Therapy
22-12-2010 at 9:21 PM
hello Amelie
since diagnoses i have been on a trial with Revlimid (Lenalidomide)i understand that the dosage is low but results appear to be lowering of my PP which is what it is intended for, as i will possibly be have a first SCT in a couple of months time, Revlimid a diritative of Thalidamild as a first line of attack against MM no serious side effects too note, apart from an occational red face and nose,i cannot comment on Thalidamide as i havn,t had it.

[AmelieParticipant]

Thank you! It is good to hear that you don't feel any serious side effects. As far as I have understood it is at the moment mostly used for relapsed patients and there are very different opinions on using it before the relaps. I wish it was more simple!

[RozParticipant]

Hi All

Michael had a SCT which only lasted 3months. His next course of treatment was Velcade which also lasted 3months. Then he was put on [u][b]Revlimid[/b][/u] this was for always until mm came back.

There was side effects from [u][b]this drug[/b][/u]

Even though we were told they would be less severe they still were pretty bad. It depends on the person.

[b][/b]Remember this is an individual disease

Roz

[MariParticipant]

Hello Amelie,

Steve's consultant was not really happy with Maintenace treatment mainly due to the toxicity of the drugs used. He was talking about thalidomide, not revlamid and he said there was no trial for revlamid as a maintenance therapy in this country. He said he could not use it for maintenance as it was not licensed in that way over here. He also said that the benefits of maintenance treatment were uncertain and no trial had given conclusive evidence. He said there might be some benefit to some patients who had received a partial response after SCT. It left us feeling very uncertain and I have a feeling that the medical profession have a range of differing views on how useful this treatment is. I think it comes down to what Roz has said, this is a very individual disease,
Love Mari xx

[AmelieParticipant]

Thanks so much for your replies Roz and Mari!
I am glad to hear it isn't only John's GP who is suspicious about it.

[susannahParticipant]

Hi Amelie Sorry I havent replied before but I have only just managed to log on to the new site, says alot for my computor skills. My husband Michael has been on Revlimid for 13 months now, the worst side effect is the extreme tiredness. His pps were undetectable after a few months, and as he was feeling exhausted for most of the time his consultant decided to give him a treatment holiday , he had to restart again in December after a 3month break as his pps went up to 2 He started with 25mg every day for 3 weeks then a weeks break, he now has 10mg every day for 3 weeks without Dex
and he has felt much better

Hope this helps
Regards
Sue

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