[HelenParticipant]

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

[HelenParticipant]

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it, potentially could be on it for a long time but if anything like the French trial starts to happen it could all be withdrawn on safety grounds.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 even if you asked, its all done by random selection otherwise there is the chance of selection bias and the trial could be declared null and void. but there may be other trials in the future and of course it is still there to try at relapse.
There was a trial of interferon a lot of years ago but not many responded well to it though some people still take it. There was also a trial with thalidomide and it too didn't really work for the majority so it is not used routinely, unless there is a very good reason. So far there are no drugs routinely given as maintenance, as treatment at relapse gives better quality of life in between times by being drug free. The disease is too unpredictable hence the race to find something which slows the progression and improves quality of life for as long as possible.
Love Helen

[HelenParticipant]

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 watch the Great North Run on Sunday, and look out for my little girl ( well she's big now!) she is doing the run for " beating blood cancers" with leukaemia, lymphoma and myeloma research ( no places were left for mmuk) I'm very proud of her she's already reached her target sponsorship and she hates running!
Have as good a weekend as possible.
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 which used revlimid as maintenance and it was stopped because of the second cancer risk. This was a very small trial and a bigger one in America did not produce the same results. Myeloma xi is looking at ove 2000 patients if possible and 500 will try revlimid maintenance. Yes we are guinea pigs, but really we have little to lose and potentially a lot to gain as we are expected to have longer progression free survival if it works.
Revlimid will not be available as maintenance for some time yet even if it shows to work. It currently costs around £4000 per month to supply so it needs to be efficient for almost everybody if there is any chance of it becoming a regular part of the myeloma armoury. The draw back is that those of us on revlimid do not have it to use when we relapse, but by then I'm hoping pomalidomide or others will be mainstream by then. Because this is going to work for me for 20 years, I hope 🙂
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 high dose steroids and more antibiotics to see if my breathing improves and the coughing stops. Only hope it's better before holiday at the end of the month. Hope you have a good time in Greece too. Speak soon
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 might be on.
I did try to read an article about it last week but have a chest infection at minute which is impairing my brain function so can't remember
A where I found it ( might be oncology times?)
B what it was about and how it works :-S
Having re- read what I've just written, I'm not sure how much sense I'm making so will stop!
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 lot of abdominal pain, nausea and vomitting and general upset for about 8-10 months, in fact it's only very recently settled down, (I hesitate to say this as every time I have recently it has started up again:-P )
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 when we are a bit run down or stressed, which switches the abnormal cell production on.
Love Helen

[Author]

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