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]

Hi
So sorry your having such a frustrating time and feeling so low – no surprise you feel so unwell when your on such a demanding treatment regime. Like you, I always feel so less able to cope when my blood count is low. My doctor put me on Aranesp (there are lots of other names for it too) and this did help a great deal – don´t know how…[Read more]

Hi Gill

Truly sorry that you have had the rotten news – you must be shell shocked and everything a blur.
Please take heart – things are moving at an incredible rate in this field and in the almost six years since I was diagnoesd there have been huge steps forward and progress has been incredible.

There are some lovely supportive people on…[Read more]

Hi

Hope everything goes well – thinking of you.

You are so pretty I think you will look good with or without hair – lovely bone structure!

Best Wishes

Carol xxx

Hi
No wonder your emotional – after the ups and downs you have had just lately I think your allowed!
My lead up to transplant didn´t always go quite to plan either and I feel for you having to take the dex again – bad enough that your hyperactive (I was rather aggresive too which is really out of character for me) but it was knowing that when…[Read more]

Hi Debs
I wonder if we are both on the same trial Myeloma 11? I have had my transplant and am back on Revlimid now (looking back I think I tolerate this better than I did the Velcade that I had for a couple of cycles prior to the transplant.
Anyway, hope the side effects are wearing off – I do get tingly feet and hands but not as badly as…[Read more]

Hi
I had Velcade to get my nasty boy count down for a couple of cycles before my transplant. I coped quite well on it – expect your mum is on it by now and you are finding out for yourselves.

Anyway, good luck to you and your mum – I´m so pleased you have each other.

Very best wishes to you

Carol xxx

Hi Tom

Hope you are keeping well and enjoying your remission – we are lucky to be here arn´t we?

Thanks for a lovely, cheerful and positive note – so very welcome! Just to let you know that I rode my husband´s horse yesterday who hasn´t been out of the field for a year and didn´t really see why she should have to leave her buddy (my hor…[Read more]

Hi Eliz

Thank you for taking the trouble to write. I still can´t quite believe that I am in remission myself! Yes, my first ride was a real triumph, not just for me but for my horse who has never quite understood why mum wasn´t out and about. He was really cross whilst I was away having my transplant and made sure that I new exactly how u…[Read more]

Great to hear positive outcomes although it´s plain that a huge effort and a mouuntain of determination has gone in to this. Well done – you must be so proud. Another example which spurs me on to grit my teeth and keep horse riding even if it´s at not quite the level I used to have – just good to keep moving.
Congratulations.
Kind regards Carol

Thank you to everyone for help/advice. Changed pain relief and so am feeling much better. Just had my first proper hack out with my horses since last summer helped by my super husband who built a special mounting platform for me which my horse Harry has taken to like a duck to water. Whatever your passion is try not to loose it – you might have…[Read more]

I am so sorry that you have had this awful news. I hope this helps. I was diagnosed in 2005 at the age of 50 – then considered quite young for this awful disease. I had my first transplant in February of this year after a year of quite difficult times. Anyway, despite fearing the very worst, and having a fairly worrying and slow recovery time…[Read more]

Hi. My husband has just started Velcaide. He had his SCT 5yrs ago and has been on Thalidamide. He almost had to do a trial at Birmingham Hosp but (Thank God) Sarah at Myeloma UK helped get funding for it at Burton. The trial would have been fine but it was 50/50 that he would get the back up drug that goes with it. So I would suggest to get ALL…[Read more]