[CarolBradley1Participant]

Hi
I am on the Myeloma 11 trial (Revlimid) – is anyone else too? I have come through the SCT and am now on 25g Revlimid daily with no dex and am in my third month of this. Feeling very tired and with quite a lot of discomfort but achieving good results so far.
I would be interested to hear how others are coping.
Thank you
Carol

[MikeBParticipant]

Hi Carol
I am on the trial and on the Revlamid leg but not as far down the journey as you. Whilst I can't answer your questions, I will be watching to see what may await me.
Best wishes to you for your continuing journey.
Mike

[HelenParticipant]

Hi Carol
I'm also in myeloma xi was on revlimid arm, sct in a couple of weeks time
Helen

[eveParticipant]

Hi Carol
My husband is on Myeloma11 trials started February on ctd arm,intense pathway,got septic pneumonia in April,spent 22 days in hospital,started chemo again on less steroids,because of damage to lungs,just finishing 6 cycle,had meeting with consultant last week,no positive outcome.
left not knowing what is going to happen,talked about not having sct,and no more chemo.left feeling whole thing has been a waste of time,(move on to next patient).Bloods and zometa next week,have made appointment to see Myeloma 11 trial nurse!!!
Kings will decide on SCT,!!!asked for figures for mortalty rate,success rate no figures,asked for length of remmission,% wise between,non sct and people who have sct no figures,found it very disheartening .
Good to know you are doing well except for a few aches in bones,best wishers Eve

[CarolBradley1Participant]

Thanks Mike – I hope this encourages you – just had the news that my paraprotien is at 0 !!!!!!! Can´t quite get to grips with it yet. Also odd days I seem to ge getting a bit more energy – just been for a short (a very short) little horse ride – I am now off to bed to recover but it is amazing that I can manage to do it and I am so grateful and appreciative of everthing that everyone has done for me and for Revlimid.
Best Wishes
Carolxx

[CarolBradley1Participant]

Hi Helen, Thanks for your reply and hope that my reply to MikeB also encourages you. I won´t say that the sct was all fun but not as bad as I had heard. One hint that I wish I had known about beforehand. Lots of people of finding that if they suck ice lollies or anything like that ALL THE TIME whilst they are giving you the high dose chemo (I had Melphalan) they don´t have as many problems with sore mouth and digestive system etc. etc. Mention it to the nurses prior I do really think it could save you some of the side effects.
Take care – let us know when you are going in so we can think about you and send you air wave hugs and support!
Love Carol.xxxx

[CarolBradley1Participant]

Hi Eve, So sorry that you have been disheartened but glad you are going to see the trial nurse. Perhaps your consultant will be able to be more clear when you have next weeks bloods as the chemo does have what my consultant calls a long "shelf life" and keeps working well after we stop taking it.
There seem to be quite a few different types of treatment out there and perhaps your consultant just needs time to consider the next round of results before making a decision on advising you of your options.
In any event I know how worried you must feel after going through so much – we did have a number of occasions like this and although we got through them they were rotten and I feel for you both but do try and get some rest yourself.(not easy I know).

Love and Best wishes Carol xxx

[HelenParticipant]

Hi carol and eve
My last post seems to be on the revlimid topic, doing things without the glasses is not advised, it took me about 5 weeks to recover from the effect of the revlimid fully
Helen

[MikeBParticipant]

Carol
0!!! That's fantastic! I am even more keen now to see what my latest "scores" are. Your post is definitely encouraging and these bursts of encouragement do help me to get past the harder days. Ice cubes seem destined to become my new bestest buddies.

Best wishes to Helen for the SCT, i hope that with my last paraprotein count at 4.1 I will not be too far behind.

Eve, I can only imagine the stress and disappointment that you and your husband must be feeling. Don't give up as we need each and every one of us to fight this flipping disease. I've not really bought into the Warrior label, but as time goes on, it is becoming more understandable to me.

Mike

[lorraineyParticipant]

Hi Carol, Fantastic that your pp is zero!! Well done! I had Revlimid for 18 months after my SCT but I wasn't on the trial, I live in France. I was very tired and suffered side effects on the Revlimid but they did get easier and more manageable over time 🙂

Eve i'm so sorry your hubby is suffering so much and I really hope your trials nurse gives you more positive information. Will be thinking of you both xx

Mike, Good luck with your treatment. Hope you get excellent results on the trial xx

Helen, good luck with your SCT! Hope it goes as smoothly as possible for you, be thinking of you xx

love n hugs Lorraine xxx

[CarolBradley1Participant]

Thanks Helen

I seem to be tolerating it a bit better this week – thanks for the info.
Best wishes
Carolxx

[CarolBradley1Participant]

Hi Lorraine
Thanks for the help – glad to hear that things will get easier. Hope you are feeling well now. (Our good news hasn´t sunk in quite yet – just hope it lasts)

Best wishes

Love Carol xxxx

[JetParticipant]

Hi Carol

I am also on the Myeloma XI trial. I had RCD for the initial treatment and am currently in hospital, having had the high dose Melphalan on Weds and my own stem cells transplanted yesterday. And yes, they gave me ice to suck for 10 minutes prior, during and 10 minutes after. so far, no mouth pain, just a bit dry and weird tasting, but not nearly as bad as what I went through taking Revlimid – that totally ruined any food enjoyment.

So, I asked about it for the next phase of randomisation, which comes at 3 months post-transplant, where you either get no maintenance medication or Revlimid. I imagine that getting Revlimid may well be the best way to treat the disease, but if it means 10 years of miserable encounters with food, I'm not sure I want it.

My consultant was very understanding and said we can see what happens. I might not go the Revlimid route, I might not get such a bad reaction to it and if I do, they can reduce the dose, or if necessary take me off the trial.

It's good to hear from people a bit ahead of me and to support those coming along behind with bits of experiential wisdom.

Best wishes to you on your journey.
Jet x

[CarolBradley1Participant]

Hi Jet

Thank you for taking the time to reply at such a time. So pleased the ice cube trick seems to be working for you so far. Sorry to hear you had such a poor time of it with Revlimid – to be honest I´m not enjoying it much either but do have the occasional good day when I wonder what I am whingeing about and feel very optimistic!

Like you I am pleased that we are all able to support each other – for me it seems very strange to be further along on the journey than others as for ages it seemed that everyone else was ahead of me. Anyway, it´s good to keep in touch and as things develop I will post any news – it all adds to our general "pool" of knowledge even though we all know that this illness is so individual.
Thinking of you – those weeks in isolation are hard and you may not always feel like doing "activities" so if your bored please email for a chat – were all here and will try to keep you amused or just be here if your having a bad day.

Very best wishes and good luck

Love Carol xxxx

[HelenParticipant]

Hi Jet and Carol
It is a great help to have the 2 of you ahead of me.
Helen

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