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Min 13 years ago.
Hi Everybody
Stephen's second auto SCT did not take He has now been put on RCD (as above)
Has anybody else had this? If so how did you get on? What were the side effects? etc
I am dreading the dexatude. Although the dose is lower this time the short temper is bubbling a little bit.
Regards Gill
Dear Gill,
I dont know anything about this treatment, but we have great confidence in the staff at King's and I wish you both well with the treatment and dealing with the dreaded dex. Let's hope it has the great effect of keeping the Beast well and truly at bay,
Much love, Mari xxx
I have no knowledge of these three, Peter was on Dex and Revlamind and he did ok but he was extremely tired and had terrible trots with it.
But as you know by now everyone responds differently depending on what kind of MM they have.
i sincerely hope that Stephen responds well to his new programme of drugs and there are not too many side effects. The difficulties of Dex are well documented and I suggest you gird your loins and get a gum shield so you can grit your teeth without breaking them LOL
Love MIn
Dear Gill
Sorry that Stephen is having to go down this new road. Let's hope and pray it isn't as bad as you fear. Lets hope the reduced Dex isn't as difficult on the nerves – yours as well as his!!!
Hope this will lead to a good long remission and make it all worth while as you have both coped with so much already.
Best wishes.
Mavis
Hi Gill
I' sorry to hear Stephens second sct has failed
I was on this combo as induction therapy for myeloma xi trial, I had all the tiredness, sickness, peevishness and generalised unpleasantness but for me it worked and dropped my light chains from 800 to 17 (normal) in 3 months. I went to work all the time I was on it but some days were very bad and retrospectively I was probably not much use there. I did keep a day by day diary of it but there was no pattern of good days and bad days, it was a cumulative effect and I seem to have got wearier and wearier as the months wore on. My philosophy throughout was just 'throw it all at me and I'll do anything if it works no matter how I'll I feel'. I did take my temp every day and that was just as well as I got 2 chest infections and the only signs were a small temp rise for a day and was poor at recognising the signs of real illness among the tiredness.
Is this any use?
Helen
Hi Gill
RCD is the other side of myeloma X1 trials,Slim got CDT side,but we wanted the RCD,if that makes sense !!!
This is the one JET had and had such good results.As you know people are affected in different ways,but they can alter the dose,It looks if it will become one of the front line drugs for MYeloma but at the moment still a trial drug.
If you look at news on this site you will find out,a little more about it,!!
Gill all these new drugs,seem to be working to a degree,I know how hard it is,but when your hear people posting on here ,all these people having good results,it gives you some hope:-)
good Luck Eve
Hi Gill Pleased to hear Stephen has started treatment, Michael was on Revlimid and Dex, he had brilliant response to Revlimid with little or no side effets (total remission) the only down side to Revlimid is that while it is working you stay on it. As for the dex Michael has always had a really bad time with it, but they reduced it and hes not been to bad, he now apologises when he has shouted at me, (only joking) but yes he does seem much calmer
Good luck to you both
love Sue x
Hi Gill..I was on RCD pathway for 5 cycles prior to my SCT in Jan 11…and my para – protein levels dropped from 16 to 0 (my light chains dropped to normal levels as well )…so it worked very well for me…side effects were tiredness/fatigue(this was a major problem)…slight shakes…itching…fingers locking up so for me fairly minor problems(apart from fatigue)… I an now on x1 trial and on Revlimid maintenance ( on a Revlimid break at the moment due to it knocking my immune system for six)
I wish Stephen all the best luck …stay safe …Phil
Hi Gill,
Sorry to hear about Stephens 2nd SCT results.:-( I know Michael was on Revlimid and Dex but that third one rings a bell too, I know its some sort of chemo drug. Michael had the runs and all sorts with his collections of drugs so fingers crossed for Stephen.. I'll be thinking about you while he's taking the Dex:-| 🙁
All the best to you both
Love Roz xx
Thank you all for you replies. You are such a great bunch of people when support or a shoulder to lean on or a bit of humour is required.
One thing we have noticed about Stephen's latest drug combo is very unpleasant, frequent and smelly wind.:-S
Sorry to bring up such a horrid subject but it has got to a stage where he exits a shop quickly because he knows there is going to be a "bottom burp" (children's phrase from years ago) he can't control it and his embarrassment is huge.
Anybody else experienced this?
I will understand if nobody wants to talk about this subject or would prefer to pm me confidentialy
Love to all Gill xxx
I was on revlimid and dex for 6 months and it got me to almost complete remission. The dex consisted of ten pills once a week so I coped with that OK. The main problem was I just couldn't sleep that night. I'm now on three revlimid pills per week as maintenance and that seems OK so far. I have the usual tiredness, neuropathy etc but as its Hobson's choice I just put up with it.
Good luck
Scott
Hi Gill and Stephen. No help from me I'm afraid. The combo bunged me up!!! Helen
Hi Gill & Stephen
I am on Myeloma 11 trial and RCD pathway at the moment I have just started my 4th cycle.My side effects have been very slight really I will try to list below.
Dexamethasone(Steroid)-Best start with Dexamethasone,I start my cycle on it for 4 days then have 7 days break and another 4 days back on again then that's it for that month.My wife is best placed to say about my Dexatude! but to be honest I am quite laid back and can tell when a Dex moment is sneaking up! and just try to smile and try to say is a Dex thing. Wife/partners are very understanding.The only other side effect on Dex is the hiccups which "do my head in!" it starts on the 2nd day(but stops when not taking) and tends to trigger when I bend over to pick things up or talk to much and dont take breath!.There are the usual old wife's tales of getting rid.What helps me is drinking a large volume of water holding breath till it goes,But this is a trial and error thing,Peppermint tea my also help.I have put some upper body weight on due to the steroid and you may develop a "fatty lump" to base of neck/shoulders again due to steroid and my consultant says it will go when I stop taking it.Oh Yeh after stopping Dex the next 1 or 2 days you may feel tired but again its an individual thing I usually have to rest abit.
Cyclophosphamide-No obvious side effects on my 50mg dose taken 1st day of cycle then 8th day of cycle,but i do take my anti sickness tablet before just to make sure.
Revlimid (Lenalidomide)I take this at between 9pm-10pm which works for me as its got a slight sedative effect and seems to just slightly contouract the Dex which can keep some people awake at some stages of the night.
The only other thing is that I can sometimes feel like I have "heavy legs" in a morning (like you have exercised to much type of thing)but once you start walking about etc it fades away. To be honest I can not complain at all really as my consultant has just told me I am in partial remission for the first time and she expects full remission in December when I see her again.I am now being lined up for SCT in St James Leeds (Jimmy's) in Jan/Feb so fingers crossed for that one! When diagnosed in August with MM (Lightchains) my levels were in the 1000s! now down to 3.4.Thats my current experience on RCD so hope it helps along with everyone's.
cheers Paul
Hi Gill & Stephen,
I can't help with this combo… but on the subject of wind, which is often thought of as somehow comical but in reality is not funny at all.
A strategy I find helpful in public places, particularly supermarkets, is to find a little old lady (I find that you are spoilt for choice with little old ladies in supermarkets, whatever the time of day). Stand behind your LOL, pass wind and gently waft your trousers (ensuring quick distribution and forcing the issue into a general area). When you become aware of the perfume look down at the LOL from behind and shake your head slowly and sorrowfully with a faint smile of acceptance and understanding. I find this works on the majority of occasions… if the LOL looks around for the culprit catch her eye and nod to the front… once she turns to the front repeat your first strategy, shaking your head a little more vigorously and increase your smile.
Sorted. 😉
Dai.
Just waanted to let you know about our positive result to treatment with RCD. My wife started on RCD in April last year, and its true that the symptoms she suffered initially were very similar to most peoples. Fatigue,mood swings…. you all know the score. However after six months her pp level had reduced to 0 ( a level never achieved after her SCT) and so was in remission. Following this the cyclo and dex were stopped and life returned to pretty much normal.Just over one year on she stilll is on the revlimid and at a reduced dose and her pp level is still 0.
I think if anyone met us they would be hard pushed to tell who was the one with an illness!
cheers and good luck
Stuart
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