[PerkymiteParticipant]

I have noticed some people are on this drug and others not, which is not unusual for MM I suppose. It seems to be used as a maintenance drug after SCT.

Anyone know the whys and wherefores or the Nice rules regarding proscribing.

Kindest regards – Vasbyte

David

[wendyduffieldParticipant]

Hi David

Revlimid is not licensed as a maintenance drug by NICE at the moment so unless you are on the Myeloma XI trial and get assigned it post stem cell transplant you cant get it. This is a shame in the light of the recent clinical studies that show that it prolongs remission (effectively doubles it). I know this because I asked my consultant and she looked into it and says it would be beneficial for me but cant get funding for it. NICE are appraising it but await the outcome of the Myeloma XI trial as they dont regard the recent studies as big enough. So unless you can afford to pay for it yourself at around £4000 per month, you aint gonna get it!

On the plus side its nice to be drug free isnt it?

Wendy

[DaiCroParticipant]

Hi David,

Wendy has it right… NICE approve Revlimid as a treatment for relapsed patients after Velcade. Its use as a maintenance drug is dependent on local or national trials etc., not as a right. My SCT failed after only 10 months… I have often wondered what would have happened if I had been receiving a maintenance back up such as Revlimid. We will never know but the random selection process for maintenance seems a tad unfair if it is seen to work for those who have access to it.:-(

Dsi.

[eveParticipant]

Hi David

People on the Myeloma trials X1.are randomised by a computer after SCT.for maintenance therapy or no treatment,so it,s the luck of the draw.Great fun it is not.Love Eve

[HelenParticipant]

Dear All
Wendy howcome you weren't asked to do the Myeloma xi trial, i thought it was a national trial? And you were diagnosed around the same time as me.
Indeed myeloma xi is still the luck of the draw, I went on Revlimid as induction and am now on it as maintenance too. Just before the computer randomisation after SCT they asked me what I felt about being on it again, it was quite a difficult decision as I have a lot of small but annoying side effects with it. I would have liked to be drug free again but I thought I might feel cheated if I couldn't give it a shot. So now I'm on it, I'm not as well as I was between induction and SCT but I'm ok, and better than before diagnosis. If it does show to work well though, it won't be too long before its widely available. Thalidomide went through the same sort of trial but did not work well enough for the majority. The trouble is that the efficacy and safety trials for new drugs take so long to complete and assess before they are legally allowed to be used on patients.
Love Helen

[PerkymiteParticipant]

Thanks for the info.

I am coming up to my final "sale by Date", original prognosis was max 3 years, and I am feeling fine. I planted my last 60 geraniums, from 360, yesterday and just the normal back ache from bending over otherwise I do not feel I am going to pop my clogs at any time soon:-D In fact I am now going camping down by the river Dart for Father?s day that is providing the rain stops. My itinerary for the next 3 months now reads:

June : B& B Isle of Wight and Camping on River Dart
July : B & B Isle of Scilly
August: Villa in Minorca, Spain

However, my 3 monthly appointment is the 29th of this month and I am getting my questions ready should there be any indication that I am actually moving on to the next phase.

Kindest Regards ? Vasbyte

David

[eveParticipant]

Hi Everyone

Helen it is a world wide Trial but it is not in all area,s of uk. I know in the South East Dr Pocop fought to get these trials allocated here.If they were not here Slim would not be on them as the nearest place that had them was Kings in London.86 miles away and sick patients would not be able to manage it.But you have the same treatment CTD or CRD then Velcade,but not the maintenance ,you would get nothing until it rear,s its ugly head again.

David i know you must dread every 3 months,but the latest dater shows patients are looking at 7 years,I do not think it,s good to be given a time line.I think it depends on the aggression of the Myeloma and how quickly it,s caught,Slims was advanced and hard to contain,so i will be grateful for any extra time. Love Eve

[PerkymiteParticipant]

Hi Eve, Yes I agree with you about time lines.

At the time of my MM diagnosis, 2009, I was aware that this was considered a terminal illness. My first thoughts were that I must sort things out for my wife, how much time did I have, there seemed to be so much to do! When the Consultant told me not to worry about that in an offhand manner I angrily insisted on having my prognosis from her [u]and at the time [/u]it was 2 to 3 years max. They had calculated, from my medical history, that I had already had full blown MM for 2 years before diagnosis, i.e. 4 to 5 years normal life span of an MM sufferer.

I am happy to say that I have done all that I wanted to do and it has been fun doing it, although that might seem a strange thing to say. The last three years have probably been some of the best of my life and Mo and I have had some wonderful years, it has brought us closer together, more than I ever thought it could, because we have always been a close loving couple. And, now, as we head for our 50th wedding anniversary it all seems so worthwhile, I feel good.

Kindest regards ? vasbyte

David

[VickiParticipant]

David,

You are an inspiration, keep going, enjoy all you can,remember numbers are only numbers and there to be proved wrong!. Hope the geraniums are doing well 🙂

Vicki x

[eveParticipant]

Hi David
I would agree, it just makes me wish I had put a high value on are years together 30 years together and 1 year married,I ask myself why we need such a wake up call as Myeloma to value what we are loosing.
I am feeling sorry for myself better give myself a kick up the bum.Love Eve

[HelenParticipant]

Hi David
There are some people who get much longer times than others too, i hope you are one of them. Though it is temping to look at time as a marker. And while it is an incurable disease, it's not terminal until there is nothing left to treat it with and you have overwhelming disease. Which does make it confusing. Especially now when we are in the vanguard of all the new therapies coming on line.
I'm looking forward to hearing your words of wisdom for years!:-)
Love Helen

[mhnevillParticipant]

HI Dsvid

You just keep beating the markers. Not just for yorself, but for all of us because you are a real inspiration. I find it is my daughter who finds it encouraging that folk are beating the printed prognosis. For myself, I keep saying they are just numbers and we are all individuals. But, we are all human as well so we can't help having "survival" in mind!

One comfort, living in a Care Village, with lots of folk with carers coming in four times a day, and with others moving into the Care Home, I am glad I will not have to cope with the problems that very old age seem to bring!!!

Lots of love.

Mavis xx

[wendyduffieldParticipant]

Hi
Yes Mavis I know exactly what you mean, as a single person with no children I really dont fancy growing to very old age and since the government increased the pension age I will have to get to 68 years old in order to get my pension, so that would be 18 years post diagnosis. I know the life expectancy is improving but would be very surprised if I got to 68! But it is quality not quantity that matters to me and whilst I am here I want to make the most of it.

Helen, I did opt to go on the Myeloma XI trial and was assigned Thalidomide but had to stop taking it and subsequently come off the trial due to the unacceptable side effects I was experiencing.

Wendy

[andygParticipant]

Hi David.
I'm on revlimid and dex as a treatment after all other treatments failed. I have just started my 3rd cycle. My paraprotein level came down slightly at the end of cycle 2 from 41 to 35. Not a big fall but it was in the right direction. I'm not getting to excited about the reduction because I've been slightly lower before. I do get nervous now when my PP test is due each month due to the fact that my options are getting low so I need Rex/Dex to work. Funnily enough I don't feel ill I just have trouble with my back!
I don't think you should worry too much about your original prognosis as that will have been given with "old" data and as we all know in MM land things change quickly. I'm trying to live my life normally in between hospital visits, though I'm unable to work, and I'm now planning holidays away. Hopefully I'll feel confident enough to book a trip abroad to Greece later in the year. I owe it to my wife of 8 months to LIVE with MM and try not to let it blight both our lives. I do like your attitude and I find inspiration from you and others on here. I've only been diagnosed since oct 2011 but I'm getting more comfortable living with MM so that it doesn't dominate my every thought and like you and others I try and live for the now because tomorrow there maybe a bus, lorry or car with my name on it and MM won't even get me 😉
Live the moment.
Sorry – I think I've rambled a bit – I blame the Dex 😉
All the best
Andy

[KeithH17Participant]

Hi everybody, just to add my bit to the debate I had a BMB last month which showed more MM cells in the marrow than would be considered normal.
My Consultant said that if nothing was done then it would only get worse so more treatment was the only answer.
He mentioned Rev/Dex and a clinical trial with me being one of it not the first to be doing it.
He also mentioned blood thinning injections to head off any problems with clotting.
My previous treatment was Velcade before having my 2nd SCT in August 2011.
It quickly got me into remission but my quality of life has never been as good as it was after the first SCT.
I think once you eventually relapse you never can get back to where you were and the remission times shorten.
I got 2yrs 4mths first time with zero PP's for 2yrs but 2nd time only 8mths and never lower than 2.95 with continuous aching and fatigue.
It's much the same in football when a club goes up from the Championship to the Prem…first season they take it by storm 2nd season they get sussed out and things are much more difficult.
So my advice would be make the most of that first remission because the next one may not be quite so long.

And that's my ramble and I haven't even started on the Dex as yet.

Take care of yourselves…Keith.

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