[DebsParticipant]

Hi everyone,

I went in to start on CTD yesterday, to be offered the option of taking part in the Myeloma XI trial. We've pretty much signed up to it as I can't see how it could be a bad thing but I just wondered if anyone had any experience of it, good or bad.

Slightly frustrated that it didn't all kick off, but positive that if I manage to get onto the Revlamid stream of it, it could be a really good thing for me.

Debs

[MariParticipant]

Hi Debs,

Not heard of myeloma XI trial, what does it involve? I hope it goes well for you,

Love and best wishes,

Mari xx

[DebsParticipant]

Hi Mari,
I think that basically I have a 50% chance of being given CRD or CTD as induction therapy, and then depending on how I respond, I may get velcade before transplant (if I don't get a full response) and then after transplant, I have a 50% chance of getting Revlamid as a maintenance drug, which has been shown to be really successful in France.
So, if I manage to get Revlamid at either of the two stages, it would be great news and if not, I just have treatment as I would have done anyway.
Thanks for your best wishes.
Debs x

[KatieParticipant]

Hi Debs,

Your trial sounds interesting. Sounds like you have all three novel treatments up front.

Will that not compromise you at first relapse, having experienced the drugs before?
Xx

[DebsParticipant]

Hi Katie,
Not sure on the answer to that one, though I will ask on Tuesday. I'm not sure it would as I thought that it was more that you weren't allowed access to it (because of cost) until you'd tried other options. I also read something somewhere that suggested that if you stayed on revlimid for more than 2 years, celgene pay for the drugs? But don't hold me to any of that…..we have lots of questions yet to ask!
I wouldn't necc get all the drugs anyway. Knowing my luck I'll end up on the standard treatment and won't get the revlimid!

[brochoParticipant]

Hi Debs I asked a similar question recently about velcade which I was on during the myeloma X Trial The reply was I would still be able to have velcade as this time its not a trial whereas before it was and doesnt count , if that makes sense !! But I dont think it compromises your future treatment love Bridget x

[DebsParticipant]

Thanks Bridget!
I'll ask the question tomorrow but I think you're right! And my other thought, is why are we all so worried about using the best treatment first…..surely it's better to use it up front and get the best quality of life earlier?? (actually, if I'm honest, that's my husbands thought, but I have to say I agree!)
Debs x

[brochoParticipant]

Hi Debs thats a very good point especially for someone like you with very little damage and good general fitness .I suppose it comes down to individual needs but better to knock it back as early as poss love Bridgetx

[strictlymyelomaParticipant]

hello debs (1st time of talking)
also on trial CRD combination besides all the anti this and that
(need a backpack for meds)
Diagnosed this year approx just over a month ago asked if wanted to do trial
Revlmid (informed by med team normally issued after first relapse) trial is to see if issuing this drug earlier has any benificial effects
am lucky so far certainly no serious side effect apart from possible increase in indigestion (so on anti Acid)
also appear to have a lot of phlegm buildup causing a bit of pain across chest (although this may not have any link to MM)according to consultant this will not affect any later combination of drug at later stages
dont if this helps you hope so
best of luck
Norman

[DebsParticipant]

Hi everyone,

Thanks for the replies. Well, I'm on day one and like you said Norman (and it's great to find someone else on the same trial!)so far no side effects apart from feeling a bit dazed – but I think that is more to do with the fact I didn't sleep all last night (despite not having started the CRD!)!!

Anyway, I know it's early days, but it's a good start!!

Debs x

[strictlymyelomaParticipant]

hello debs
so far to date i can say that i have had no serious side effect from the CRD to my knowledge
i have had what i presume is the normal effects of MM, tiredness, pain moving around the torso,inistialy nights are worse with the pain causing lack of sleep and brain not working sometimes or maybe thats just senility
took a while for the pain control to be sorted after seeing various medical people but generaly sorted although still get breakthrough pain now and then sometimes it is 2 forward 1 back, good news is that there are lots of good people fellow sufferers and carers who have helped on this discussion board, even if they dont reply just look at the interest shown by the number of hits on questions
norman

[DebsParticipant]

Well, I thought I'd do a quick update in case anyone else is going on the Myeloma XI trial.
I'm now on day 5, so have had 4 days on dex and 1 day off, and still seem to be doing pretty well! I know it is early days….as Nick keeps telling me, we've got over 100 to go, but you have to take what you're given don't you!
I think I can sum up so far in saying,
– limited sleep but only in so much as I don't sleep deeply….I haven't been up for hours in the night or anything awful like that
– everything tastes like salt water (even the glass of champagne I tried at my niece's 21st yesterday 🙁 )
– some raised bruising on my legs which I'm just keeping an eye on but doesn't seem to be getting worse.
Nick is off to Madrid for 4 days now with business so I'm keeping my fingers crossed nothing deteriorates while he's off…think I'd find that a bit scary!

Anyway, hope that this sort of diary might help someone along the line!
Debs x

[brochoParticipant]

Hi Debs so glad it hasnt been too awful for you The taste thing is my worst side-effect I can just about tolerate everything else but I love my coffee!!Keep an eye on those bruises and mention them when you go as you could be getting low on platelets Take care love Bridget x

[LindseyParticipant]

Hi Debs

My first time of writing, dragged out of the woodwork by your mention of the trial! My mum is recently (Aug Bank Hol) diagnosed and was also invited to join the trial. We looked at it pretty much as you did – it can't be a bad thing to potentially have access to these drugs (though the randomisation can be annoying as you still don't definitely get them!)at early stage. There is also some evidence to show that patients on trials can respond very positively, not just because they may have extra/different treatments, but also because they can be monitored more (for the docs curiosity, if not entirely altruistic!)and also apparently there are some phycological benefits, which aid recovery. She was (it seems) lucky to get the Revlamid also, even though she doesn't like them very much (I gather they knock you out a bit!)and we are now on 4th cycle so we will see how we fare. First reports have seemed good though, and most of her issues are with bone pain rather than side effects of the treatment itself.
I don't know if you have been to one, but my sister and I attended the London Info Day, and the Revlamid came up again and again as a good drug, and one which people seemed to want to be made commonly available. The Velcade is also a bonus, but I am hoping that won't be needed (for either of you!) and we can skip onto an SCT and big remissions please!

Just out of interest, where are you being treated?

Lindsey x

[DebsParticipant]

Hi Lindsey,
I feel very much the same as you about the trial….don't think it can be a bad thing at all, and hopefully I'll avoid the velcade option as I'd rather go straight to transplant and just get on with it all.

Like your mum, I'm having limited side effects and am just really tired (but I always am with 2 little kids!). It was great to be offered the revlimid – like you I went to the London Infoday and it was good to hear how positive everyone was about it.

I'm being treated at the Royal Marsden….I live in High Wycombe…what about you and your mum?

Sorry for the short one but I need my bed now….catch up another time I hope!
Debs x

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