Hi Vicki
Yes GCSF is cumulative, but some people are slower than others at mobilising, its all about individuality again. They will just keep going until his cd34 is high enough to start collecting, might even give him the magic mobozil that Steve had last week, they won't give up, just ask Dai about long drawn out collections!
Keep your chin up, even though it's so disappointing, you are getting there.
Love Helen
Hi Charlie
Welcome! I'm on the myeloma xi trial, I started it nearly 18 months ago, on the revlimid, cyclophosphamide and dexamethasone arm, I was 56 when diagnosed. I had 4 cycles of the induction chemo, then went into complete remission, had SCT and then was randomised to receive the Revlimid as maintenance therapy. I'm on my 9th cycle now. I am still in complete remission, I feel ok ish most of the time, better than the 2 years before diagnosis, when I was not very well at all.
Good luck with your decision making, whichever pathway you chose. As Vicki says you only can make the decision and you can't ever know what the other pathway would have been like.
Love Helen
Hi Paul
Got my fingers crossed that all goes well for you, good luck
Love Helen
Hi Vicki
I think, like everything about this illness, that it is not possible to predict how each individual will be in any given circumstance, so it's best to take each situation as it comes and not build up your hopes too much. As I live so close to our hospital I was going to be almost a day case patient, in and out on alternate days, as it turned out, despite being as fit as a lop beforehand, I had every post sct complication in the book and instead of the predicted 3 month recovery, took almost a full year for all the problems to settle to a tolerable level. All the drugs I've had have had a more severe and longer lasting effect than predicted, and no one knows if this is a good thing or not, we are all so different.
I'm on a phased return to work, 16 hours this week, I'm totally shattered, came home after 4 hours today and had 3 hours sleep, now off to bed again. I don't know if it gets easier, wait and see I suppose. it's funny to think of Colin being exactly a year behind me, makes me think of all the things I was going through then!
Got to get up 20 minutes earlier to fix the hair:-)
Love Helen
Dear Sue
How very sad and sudden a loss for you, you will still be reeling. As Eve has said, I do hope that you had some peaceful, quality time that you can gain solace from.
Love Helen
Hi Eve
Yes I understand, but it's no less horrifying to hear that you have gone on all this time without an expert nurse to contact. Mine is available by phone or email. You are right in saying that I am spoilt, I'm only a mile from a tertiary centre, so it's only a 2 minute run to the experts, for which I'm very grateful now.
Love Helen
Hi Eve
It is hard to believe that a place like kings does not have a designated trials nurse or liaison person to answer all your questions. You said I was in a privileged position here because I work in the hospital, but actually, I work in the university so whilst I understand the system I didn't know anyone in it until I got here, and I didn't tell them what I did for a while, i was so embarrassed that i'd ignored how ill I was. I do think that there are not many nurses who really understand myeloma though, only our nurse specialist seems to understand. But maybe we just have a better system here in the North East, which gets us back to the post code lottery bit I think.
This forum does inform us all quite a lot though.
Back to to thalidomide as maintenance, there was a trial a few years ago and there are a few people still on it as maintenance but overall it was pulled as there was no great evidence that it worked for the majority, the same went for interferon which they tried about 15 years ago. The maintenance trial is just that, revlimid has not been used as maintenance in newly diagnosed in europe, this is the first big trial. Until these results are published then i doubt Celgene will get marketing authorisation for use in newly diagnosed patients, or as maintenance. The results of it will be about 3-4 years away and will depend on how we all get on. I've not seen any interim data, it is supposed to be done annually but might not be in the public domain yet, maybe MMUK know and could tell us.
If you look at the numbers for Second primaries the other way round, there is a 90% chance of not developing them. Good odds when you look at the chance you might get progression free survival. Most occur after 2 years on Revlimid, and you will be carefully monitored if you are in the trial. You also have to remember that with MM currently only 17% of us get 10 years. If Slim does get the maintenance, you just have to decide on the information we have now, and go from there.
Hope he's doing ok still.
Love Helen
Hi Vicki
I hope all goes well for Colin next week, the GCSF made me fell as though I'd been kicked in the chest by a horse sometimes, especially when rising from the sofa, 😛 But harvest was straight forward, then I took three weeks to feel well again. I had my transplant 15th- 17th August last year.
Stephen, you seem to have done remarkably well, hope it continues.
Love Helen
Hi Tina
Good to know things are progressing nicely, where are you off to on holiday? I hope the weather is good.
Love Helen
Hi All
I'm not sure there is anything else I can add to this debate, as Eve has said, I am in a different group to Dai in that I have had Revlimid as a newly diagnosed patient.
Much of the research into these drugs is new, ongoing and not yet quantified, some people relapse quickly and there is no way of knowing yet who those people are. There are however a lot of people now at 4 years post SCT on revlimid maintenance , the longer they live the higher the chance of Second primaries just because they didn't relapse from the myeloma is they way I see it.
Yes it is a gamble, it may not benefit me to take part in this trial, but I am fully sure that it will help inform the treatment in the future. I do feel fully informed, I know the drug can be reduced, and it can be stopped too but I'm still prepared to give it a few years if I can.
Eve, don't feel bad about asking questions, you have every right to know what is happening, I ask them all the time! Sometimes though as professionals we can bombard patients with information and they don't always want it. In my neck of the woods we give written info out and a phone number for advice at any time it is never begrudged, informed patients are often easier to work with. Incidentally MMUK has a leaflet about myeloma xi but it doesn't talk about the second primary issue.
Love Helen
Dear Mari
That is good news and the holiday is a lovely bonus, have a good rest and enjoy it.
Love Helen
Hi Mari ad Ali
Watching and waiting is very hard, I do hope you make it to holiday Mari.
Ali, is your mum back on Clexane now? If she thinks there is another clot she shouldn't really hang about, get her to ring the hospital for advice.
I shaved my own hair off, I caught sight of my thinning locks in the mirror and the clippers were in the cupboard, weeping buckets,I shaved my head. I went back into the sitting room to a deathly silence, no one could think of anything to say for a minute then my husband asked me if I wanted more tea and it wasn't discussed for a week. I have photos, and now it's beginning to feel like a distant memory.
Love Helen
Hi Eve and Keith and Amelie
I have been only treated with revlimid, cyclophosphamide and dexamethasone as primary induction, part of the myeloma xi trial which is comparing current best treatment with new ones. I spent 5 days deciding which would be my best option in that raw stage between diagnosis and treatment start. I cried a lot, it was a hard decision, I am a clinical trials research nurse by profession, and I can tell you I struggled with the choice. However, the evidence I have read made me choose the trial, even with the added risk of second cancers, all of which seem to be blood or skin based, as Keith says the difference between 2 and 7 per cent is very small, and with myeloma there is always a 2% chance we will develop second primaries anyway.
However it was my choice and within 2 months of revlimid treatment commencing, I was in complete remission, at 3 months post SCT I was again randomised to the maintenance arm of the trial where I received Revlimid again. It's not without troublesome side effects (as we know Keith and Dai, as we discuss things of such a personal nature that no one should really know about eh 😉 ) if I carry on with tummy trouble the dose will be reduced and possibly stopped, but I've not got any thinner recently so maybe I'm ok.
However, the trials are stringently monitored, we are inspected to the point of persecution and I am quite glad to be in it even if I'm unlucky enough to be part of the 7%. I was asked how i felt about the maintenance and i could honestly say i'd have felt cheated if id not been able to give it a try, even if i felt rotten on it again. My feeling is that I need to be here, I would put up with anything to stay a bit longer. I can remember nursing patients 40, 30 and 20 years ago with myeloma, life expectancy has increased slowly over the years but still is measured in single figures for the majority. Only by bringing new drugs into the frame will we see the situation change, I hope I am here to see it.
BUT it always has to be our informed choice.
I'm sorry I seem to have got on my soap box again, hope I didn't upset anyone:-)
Love Helen
Hi Amelie
The Revlimid marketing application has been pulled from Europe as the Authorities asked for " more mature data " to be presented before a decision could be made on its safety. Ergo more research needs to be done. As part of the myeloma xi trial, revlimid is used as primary treatment and as maintenance, this is still the only way it can be used in Europe except as third line therapy. The results of the trial are going to be some time away yet. As far as I am concerned, being part of the trial I considered to be my 'best option' as the prognosis in myeloma is still 'not brilliant' in the grand scheme of things. I feel that the risk of second cancer versus longer progression free survival an even sort of risk. Obviously everyone has to make their own choice about it.
Meantime I do hope Johns 2nd SCT recovery goes smoothly and trouble free.
Love Helen
Dear Etta
As Mari says, ramble away, I'm one of 4 girls and all my sisters are all close, I'd be devastated if anything happened to any of them, so you have every right to feel right down in the dumps, not least because of the stage you are in your treatment also. Life is so unfair sometimes.
I had a whinge and moan yesterday for no real reason at all, just the sheer endlessness feeling of being constantly poked, prodded, pricked and provoked by the vicissitudes of the disease, and I didn't have the excuse of a tragic bereavement.
So feel free to feel down, I hope it doesn't get too much and and I'm glad you have your daughter and family to share it with. I do hope you feel a bit better soon.
Love Helen
