[CarolBradley1Participant]

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 don´t also it´s us or our loved one and not them or theirs! I´m sure once you explain how worried you are they will understand and explain it to you.
Nowadays if I don´t understand something I just ask them to explain it to me as if I were a three year old – that seems to make them smile and give me an explanation that a layman can grasp.

Sorry you have had the upset but glad to hear he is doing so well otherwise. Please let us know how you get on when you get the time.

Love Carol xxxxx

[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

[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

[CarolBradley1Participant]

Thanks Helen

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

[CarolBradley1Participant]

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 believe it after so many years of constant anxiety etc.
Best of luck with the lead up to you transplant. One hint I have heard from lots of people since I had mine was to such ice lollies etc whilst they are giving you the high dose chemo. They have found that they had far less side effects in the weeks after than the rest of us. Anyway, can´t do any harm to mention it to your nurses. I think they are already doing this at Durham (?) not sure about that but one of my own medical team mentioned it to me also but unfortunately AFTER my transplant so I can´t say if it works for sure.

Good luck and best wishes
ps. after the good news we have just had I won´t be whingeing for quite a while but I will happily indulge everyone else whilst they do!!!! After all everyone has been listening to me do it for years now xxxx

[CarolBradley1Participant]

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 really helps to talk to other people on the trial – I don´t feel "on my own" quite so much now – hard to talk to family as they get upset and worried enough – don´t want to be the cause of any more.

Take care
Carol xxxx

[CarolBradley1Participant]

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 bit less hard on myself? (I think she means why don´t I stop being selfish and save them some worry – can´t blame her really) I have a sneaking suspicion that if I start indulging myself too much this horrible illness will get the upper hand. Anyway, at my age "use if or loose it".
It´s hard for people like us who have worked hard all their lives (and enjoyed doing so) to sit back and give up isn´t it?. Keep on cycling (and anything else you enjoy). Perhaps we ought to put some of our energy into fund raising but not sure how.
Love Carol xx

[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

[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]

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]

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

[CarolBradley1Participant]

Sarah,
We are praying for you both.
Love Carol

[CarolBradley1Participant]

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 date – lets hope for the best, you should be fine as you are in such good shape.
Best wishes
Carol

[CarolBradley1Participant]

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

[CarolBradley1Participant]

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

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