Hi -whinge away! sorry your having such a poor time of it. I am nearly at the end of month three of this latest round and am on 25g and feeling pretty fed up. Regarding the sweating no I don´t have that but do have rashes and sheer exhaustion – I am now only managing 4 hours before I have to lie down again for a few hours rest and trust me I`m…[Read more]

Hi Laura

Sorry you have joined us – I`m sure you must be so worried about your Dad. I didn`t have thalidomid but other chemos give similar side effects and they gave me some smashing tablets that really helped with the sickness – please do ask for them. As mentioned already I too found that taking the chemo at night helped a lot.

Take care…[Read more]

Hi
Sorry for the delay but only just read your post. If it helps my level has gone both up and down in the past (by quite a lot) and I often thought it was when I was very tired or under more pressure at work.
Hope your getting some answers – it´s difficult to ask when they always seem so laid back but remember they know all about it and we…[Read more]

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!…[Read more]

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

Thanks Helen

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

Hi Helen
I had my SCT in February then we had to wait 100 recovery days at which point they started me on Revlimid again. I am now in month three at 25mg and although tired and in some pain etc. not too bad considering what it is doing for me. As you will see above in my reply to Colin my paraprotien is at 0 at present – we just can´t quite…[Read more]

Hi Colin
Just heard that my paraprotien is at 0 !! Can´t quite believe it and am hoping it´s not a "fluke". Glad the dex takes away the back pain – I have had that before the SCT (it made me think I had superhuman powers and was cleaning kitchens etc at 3 am in the morning) but not since – perhaps I could do with some now to perk me up!
It r…[Read more]

Thanks Tom, Pleased that you also feel like keep on "giving it a go". Sometimes I can feel my family´s disapproval when I try to do the things I did pre transplant – but the more I try the more I seem to be achieving – rather like you. My daughter says I do things now that lots of 56 year old´s have never done so why don´t I just try being a bi…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Thanks Helen that does help – it´s really encouraged me to put up with feeling rotten – I might stop whinging now!
Best wishes Carol

Sarah,
We are praying for you both.
Love Carol

Hi Ivan
No treatment other than a monthly injection to help with the anemia – but no chemo or anything. I plodded along quite well like this until last June when my paraprotien spiked when I was offered a place on the Myeloma 11 drug trial using Revlimid. This seems to be working for me at present.
Glad to hear your symptoms are minimal to…[Read more]

So sorry to hear of you disappointing news. Dex is horrible isn´t? As if you both didn´t have enough to contend with. We live in Yorkshire so if we hear any thunderclaps we will understand perfectly.
Thinking of you and pray that your luck changes soon. Love Carol xxx

Hi Loraine
So pleased to read of you lovely, if unexpected news. How lovely for you and thank you for telling us as we all know that any good news spurs us on. Hope everything continues to go well. Carol xxxx

Hi,
Wow, I am so pleased for you, what a fantastic result. You have really encouraged me as I am at present on Revlimid (without dex)25mg and not feeling very well with it but if it works it´s worth it. Do you think they might reduce my dose – does the paraprotien have to be at 0 do you think?
Hope everything continues to go well and that you…[Read more]

Hi
Hope everything is going ok and you are getting on top of the routine – I found it very confusing to start with. Yours sounds very similar to my protocol and althought the steroids did make me feel quite upset and grumpy it has been worth it as I have come through the transplant well.
Very best of luck – if you feel grumpy you can always…[Read more]