[TinaPParticipant]

Hi.

I was randomised (Myeloma1X) after sct and full remission achieved.
I am taking Revlimid 5mg for 3 weeks out of 4.

I am on my second lot, and so far no problems.

The question I ask is, how will I know if my remision has been lengthened if nobody knows the time scale without the drugs?

Take care everyone

Tina

[VickiParticipant]

Hi Tina,

Hope you are progressing well and feeling better each day 🙂 I don't know how they work it you know….I suppose they are checking general remission averages, based on the masses of who takes it and who doesn't? Who knows. Colin elected not to take it in the end, his call and hopefully not affecting his remission rates…….

Hey HO! Keep well

Vicki and Colin x

[petesilverParticipant]

Hi Colin & Vicki
The only thing I can add is I was on lenalidamide for 5 months but the I got a lump just below the knee it didn't hurt but I had it checked out and it is a plasmacytoma ( which according to my consultant can happen even though the drug was doing its job of bringing down my paraprotein very successfully) so now i have to have RT on Monday and a full CT scan on Thursday to check for any further problems ,if any,I know this may be a rare case but if you do get and unusual lumps or bumps its worth having them check out asap.
Pete

[john62Participant]

Hi tina snap but i am on 10 ml rev and zolinza

start to day

Thay dont know haw long for ?? beats me to

love john

[PeterJamesParticipant]

Hi Colin & Vicki
Today's e mailed myeloma news has an article on Revlamid as a maintenance drug
The opinion in the report from trials is it does extend remission
My specialist was of the view , you have done very well , leave it be , but I am going to show him the report on next visit
Hope that helps
Peter
PS : now turning into a greedy pig !

[bandityogaParticipant]

Peter

Can you email me the report on maintenance?

Maureen

[PeterJamesParticipant]

Hi Maureen
Please advise your e mail & i will send on the article
All the best
Peter

[jmsmythParticipant]

Hi Peter I have PM you for info
Love Jean x

[adamsp41Participant]

Hi Vicki and Colin…I had SCT in Jan 2011 and was selected for the maintenance programme (myeloma X1)…I have been taking Revlimid for just over 2 years…in decreasing amounts starting at 25mg and now have ended up on 5mg on a 21/28 day cycle…like everything with this s..t disease there are no parameters to be guidelined by….you go on the trial and take the drug ( Revlimid in my case )and my blood readings get splattered to oblivion…so do I come off and hope my bloods recover …or…as my consultants say will or does the Revlimid give you an extension to the remission…it's like trying to grab hold of fog..the consultants still seem to be in the dark somewhat as to the effectiveness of this drug…but that is the point of the trial and that was my reasoning for agreeing to take part…I too like Colin am sick and tired of taking drugs and all the crap that comes with it… wish you well in your future decision making …it really is a tough choice…stay safe…Phil

[bandityogaParticipant]

Peter

My email address is maureen_cerdan@yahoo.co.uk.

Going to ask consultant why Ian will get no maintenance so I would appreciate if you could email me the article.

Hope you are still keeping well.

Thanks

Maureen

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