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it, potentially could be on it for a long time but if anything like the French trial starts to happen it could all be withdrawn on safety grounds.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]

So sorry to hear the sad news Gill. Im glad that you were able to share one or two moments with him before he slipped away, you were both very brave and now you can start the grieving process. Thank you for your kind words to us, we are all at different stages of our journies.

Wendy

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]

Hello David
What a relief to get results like that, hope the RT goes smoothly. Keep us posted.
Love Helen

Dear Gill
How desperately sad, I have no idea nor have any words to make it better or easier for you. Just know we are thinking of you and Stephen.
Love Helen

Hi Chris
Glad the wedding was a happy time, And that the commissioners have been leant on enough to come up with plerixafor for you, I do hope it does the trick and you get to ASCT. I am at last feeling the benefit of mine and my quality of life is pretty good.
Love Helen

Hi both
For what it's worth, I've never consumed much aspartame, and our diet has always been a very healthy, organic where possible, low fat etc diet as my husbands family all seemed to die in their 40's of heart disease. My family all live to 100! So here am I with MM!. I think it is just one of those things, probably a tiny cell malfunction…[Read more]

Hi Peter
Good to hear you are doing ok on the CTD. I will be at the Manchester Myeloma Info day and am giving a patient experience talk. Look forward to meeting you.
Wendy

Hi Helen, I certainly did celebrate over the weekend, I made cocktails and cooked dinner for some friends who had supported me through the process and I had afternoon tea and champagne on Sunday!! Still recovering, no balloons though.