[shirleyParticipant]

Hi everybody,sorry i've been a little quiet,but for the last 3/4wks,i've been suffering with graft v host,its something my consaultant wanted to happen after having the donar stem cell,unfortunatly for me its left me with a very sore mouth/tongue and badly chapped and blistered lips,my hospital has been brilliant with treating me,they put me back on steriods,and given me steriod mouthwash,but this gvh has also affected my liver,this week i'm told my liver is getting better,but they are abit concerned my mouth isn't clearing up,so this week they decided to lower my steriod intake and put me back on the ciclosporin,might even have to have the intraconazole back too,won't know til tomorrow,. I was just wondering if anybody else who's had a donar stem cell has experienced this disease,and how did you cope,. Hope everybody is well take care Shirls x x

[scott9Participant]

Hi Shirley

I've just finished taking my last batch of steroids and chemo pills today. I'm due to see my consultant next Monday to decide what to do next. My options seem to be the usual SCT, but my creatinine reading is 359 which equates to about 15% kidney function. This makes SCT more risky and at the end of the day there is no guarantee it will make a huge difference. I am leaning towards maintenance therapy ongoing but will see what happens next week.

This forum has been really helpful to me in seeing what other people are doing and how they are coping.

I really hope your transplant gives you many more years.

Good luck

Scott

[shirleyParticipant]

Hi Scott,i'm in remission now and getting this gvh will delay the mm coming back so quickly,i know it will come back eventuallly but not so quickly,i promised my husband that he'll get a good few years of me nagging him hahahaah. I do hope what ever treatment they do for you next works. I was diagnosed 2yrs ago next month,and i've been pretty positive throughout,yeah i've had low days and pretty tearful days but mostly very upbeat days. I do hope you manage to have a sct,the best thing i ever had,but i do understand what your saying,yeah it will be risky,but can i ask what would you like to do,sit and suffer or take the risk,whatever you decide i wish you luck and take care x xShirls x x

[scott9Participant]

Funnily enough I've promised my wife she can have a few more years nagging me too! I certainly don't want to sit and suffer. No point keeping going without some sort of quality. I'll see what the consultant has to say about that next week.

You are a year ahead of me as I was diagnosed last Sept. That's the great thing about this forum, you can learn from other peoples experiences and maybe I can add something too.

There seems to be lots of new drugs etc in the trial stages so maybe they will keep us going. Let's hope so.

[BADGERParticipant]

Hello Scott
I see you may be taking the same route as me I chose not to have SCT as the full strength chemo could have finished my kidneys off completly. When I was diagnosed Jan 2009 I had really bad kidney failure due to MM my creatinine was 485 and I was on the verge of dialysis it is now (last reading 239 ) after CDT which I finished april 2009 I took 100mgs of thalidomide until april 2010 when i started to get bad peripheral neuropathy in my feet the only medication I take at the momement is for the kidneys if you look on the internet an american doctor James berenson talks at length about maintenance and not SCT all very interesting;-)
kind Regards Jo

[BADGERParticipant]

Hi Shirls

sorry you are not feeling so good at the moment I hope it passes soon
how are your aches and pains from the fall, i know its good to be positive but I try but do have some down days
Keep well
love JO 🙂

[shirleyParticipant]

Hi Jo,all my head injurys and bruises have cleared up lovely now thanks,still get the odd twinge in the back,but doing good,i had a check up yesterday,and they finally gave me some steroid cream for my lips,thank god,i was starting to get quite tearful with it all,but i'm picking up lovely again,hope all is well with you and enjoying this beautiful sunshine,take care & best wishes Shirls, x x x

[myraParticipant]

Hi Shirls
Sorry to resd that you have been having such a rotten time lately but if it shows the allo is working it will be worth it. Hope the steroid cream does the trick on your mouth. Hope to see you at the support group when you are feeling better. Myra

[scott9Participant]

Hi Jo

Many thanks for the message. Do you know, I first considered declining the SCT when I read one of your notes some time ago. I noticed that you had kidney problems too. I didn't realize that you got so close to dialysis. I thought my creatinine reading at 359 would be hard to beat but you certainly did that. It is hugely encouraging to me to read that your kidneys have improved. There is hope for me on that score too then.

I will definitely have a look at what the American doctor has to say re SCT. My consultant is Dr Schey. He mentioned last week that there will be more results within the next 18 months re a comparison between remission periods between SCT and maintenance therapy. I will be happy to go along the maintenance therapy route and see how long that gives me.

I will post what happens next week as that may prove useful to others.

All the best

Scott

[shirleyParticipant]

Hi Myra,lovely to hear from you,its been a slow 6months since the allo,and i'm doing really well,my only problem is just my mouth,but thats starting to clear up lovely now,and i thankyou for your concern. I nearly made it to the last support meeting but Dr Hamon wanted to see me, glad that this gvh is working it will delay my mm coming back early,so good al round,, Hopefully i will be at the next meeting,so it'll be great catching up with you and the others,you take care and i'll see you soon. Love Shirls x x x.

[BADGERParticipant]

Hi Scott

I will look forward to your post good luck for next week I will have to give you an answer the week after as we are taking our grandson to Wales for a week
weather forcast looks terrible but hey ho that british weather for you

kEEP Well
love Jo 😎

[SharonGParticipant]

Hi Shirls
I'm glad to hear that things are going well for you apart from the GvHD, but as you ssay that is a good thing! I haven't posted for a while as I have not been feeling too great on velcade, generally very tired, then I'm awake in the middle of the night thanks to the dex!!!!!
I had GvHD following my allo, mine appeared about 3- 4 weeks after the transplant and I had a skin rash all over my chest and neck and the lovely diarrhoea! I was put on prednisolone (another steroid thats just as bad as dex!) it took about 6 months for me to get off the steroids and of course once the GvHD effect had gone my mm came back!! This won't be the case for you as your treatment has been so much different to mine!
Wishing you luck
Sharon x

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