Dear Rachel
I am so sorry to hear about Paul's untimely and so sudden death. A terrible shock to all of you after such a fight to his SCT. He was such a regular contributor and very helpful to me when I was so worried about the rigmaroles of work. I shall miss his presence here so much, as Dai has said, a fellow traveller whom I hoped would keep…[Read more]

Hi Eve- I think the vitamins is a good idea, I catch every thing going these days. Venice wasn't too busy when we went, the advantage of the hire boat meant we could look at the crowds here and there then go in the opposite direction, we were a bit off season too so it was ok and the boys made sure I was steered away from coughing and sneezing…[Read more]

Hi Ali
Thanks for asking, but you might regret it ,:-) I've been getting to grips with work again, no mean feat after all this time and trying to get back to a semblance of normal life. what is that?? Is it ever going to be normal again? My memory seemed to leave with the melphalan, along with all my mucous membranes and is yet to return in its…[Read more]

Hi Vikki
What an ordeal it has been, get some rest and enjoy a few weeks now.
Love Helen

Hi Andy
Glad to see you had a good holiday, let me know when you are back in my neck of the woods.speak soon
Love Helen

Dear Vikki
Hope it all goes well and that the cells stop sticking and start moving.
Love Helen

Hi Gill
A lovely waffle, Stephen must have been very lucky to have had you in his life. Good luck, keep in touch
Helen

Hi Chris
This is great news for you both. Hope the rest of the journey goes smoothly, do you get a date soon?
Love Helen

Oh Gill
As If it weren't difficult enough. I do hope your celebrant is a better choice.
Love Helen

Hi Eve
No you are right, those of us who are on it, potentially could be on it for a long time but if anything like the French trial starts to happen it could all be withdrawn on safety grounds. We just don't know. If Slim has not been drawn into the treatment arm then it is close to impossible that he would go on it as part of myeloma xi trial…[Read more]

Hi Vicki
Well, it was never going to be an easy ride and I suppose someone has to test the system to its limits, and clearly it is Colin's turn at the minute!:-/
I do hope you get a date soon and things begin to move, it's so unnerving having all this uncertainty, you can't plan anything, it's very depressing too.:-P
So keep your spirits up…[Read more]

Hi Ali
I had lots of yoghurt and I still took the anti sickness tablets for ages, has she had lansoprazole? And gaviscon, I took them all together! And lots of snacks between meals. It's worth trying everything again.
Good luck
Love Helen

Hi Eve
Revlimid is only licensed to be used as 3 rd line treatment, ie thalidomide and velcade have each been tried and failed then revlimid is next. Revlimid is only available in use as first line treatment as part of the myeloma xi trial. It is also only available as maintenance in the trial, as is zolinza.
There was a French trial recently…[Read more]

Dear Gill
I am so sorry to hear about Stephen, you will miss him so much
Love Helen

Hi Andy
It is a blow when that happens, I find it very disconcerting when it happens to me, you come away thinking no one really cares or has any insight into how you really feel. Next time you come up ring his secretary to see if he's going to be there and if not maybe ask for it to be rearranged.
My chest infection is way worse and am now on…[Read more]

Hi Andy
Glad you had a good holiday, how did you get on today?
Love Helen

Hi Eve
I think they have added this to the options for the myeloma xi trial so that there are 3 routes now after sct on the intensive arm, ie no maintenance, revlimid only, or revlimid and vorinostat, (zolinza) but I'm not Absolutely sure. I think Ali might know more about this as she mentioned it sometime back as a potential scheme that her mum…[Read more]

Hi Keith
Glad you are feeling a bit better, I never put any weight on on the dex either, and lost quite a lot after transplant – it still hasn't gone on again either.
Love Helen

Hi Craig
I'm with Tom here, I took the anti sickness tablets twice a day for about the first month, more often sometimes when i felt so shocking, then I took them on and off for the next few months. Keep going with the antivirals -very important so you don't get shingles, the cotrimoxazole is an antibiotic, so keep going with that too. I had a…[Read more]