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]

Hi, only just read about your situation and was horrified. So glad you seem to be getting the right attention now but sorry that you have all been through so much just to get to this point.
Congratulations on your wedding – who needs money if your together?
My very best wishes to you all and prayers for your Mum that her strengh improves a bit…[Read more]

Hi, I had my transplant in February of this year and have not had "achey legs" (but still have a lot of back ache etc.) However, I too am very tired but suppose this will improve when I finish my current round of chemo. Has anyone retuned to their "normal" energy after transplant? – Suppose its asking too much but it would be lovely to think we…[Read more]

So sorry to meet you like this – we all understand how shocked you and your family must feel. I don´t know if this helps but I was diagnosed in 2005 in my early 50´s and remained very well until last year. Even when they decided we had to start treatment I was still working full time although I did feel very tired by then. Anyway, here I am, j…[Read more]

Hi Pam
I can´t add any more to the comments you have already received. Just wanted to say how sorry I am that you are going through this awful time and wish you all well in the weeks to come.

Very best wishes

Carol xxx

Hello Peggy
So sorry that you have joined us – but at least you know what your dealing with now and this site is a big help – just about the only place you can have a "little rant" as everyone understands completely – were all in that place at times. It´s difficult to let off steam with loved ones as you don´t want to upset them any more than t…[Read more]