[pennylawsonParticipant]

All you helpful people….has anyone any experience of an allogeneic stem cell transplant? I'm out of my depth before i even start giving it serious thought. Thanks for any guidance, I know its a big question.
Penny

[eveParticipant]

Hi Penny

First may I say I cannot help you,but I have replied to boost you up to the top again ,otherwise some post get lost

I think I am correct in saying Shirley has had one from a sibling and there are a few people in the process,I know Shirley does not post much,so look out for a girl in a cowboy hat LOL.I think she is based in Southampton.
Other people may come on and be able to help you,Good Luck Eve

[JetParticipant]

Hi Penny

I am also about to face a donor stem cell transplant – providing they can find a match. Any prior experience, particularly about recovery and GvHD would be appreciated. Do you have a possible date for yours? Mine will probably be around May this year.

At Nottingham they have a list of 9 patients who've been through it from a similar position as myself, i.e. following a failed auto. The longest is 4 years post-transplant, alive and well, in remission and with 100% chimerism – that means the donor stem cells have completely taken over the immune system – so it worked. I will be sharing more about this on my blog, including a chart showing patient results at a local level, when I get round to writing it (jetblackliving.wordpress.com).

Jet

[pennylawsonParticipant]

Thanks Eve and Jet
I'm only at the thinking about it stage so far. Autograft planned for June/July, but it has been suggested I could go for a tandem transplant and I'm interested to learn more about the pros and cons. Wish you the very best with yours Jet.

[mhnevillParticipant]

Hi Penny

Have you looked up Allo Transplants on the Myeloma Beacon (USA) Web site. I feel I read quite a lot on there.

You are very brave to be considering this, but I guess, if it presents the best hope…. Jet's comments were very encouraging about the lady who seems to have had a cure.

Do keep us in touch.

Best wishes in your decision making.

Love

Mavis x

[shirleyParticipant]

Hi Penny,like to say Eve is spot on,i did have an allogenic transplant just over a year,i was diagnosed in August 09,had my 1st transplant(autogenic)in January 10,and then that summer they decided for me to have a allogenic,so they tested my brothers & sisters,and we found one match.The sct is much easier because you know what to expect.Recovery has been very slow,without frightning you,while in recovery you might experience GVH,have your doctors warn you about that,i'm going through now still have been since August,its been a rough ride,and has damage my lungs,apart from my lungs i'm feeling loads better,i hope i can be of some help,don't be afraid to ask me anything ok best wishes Shirley,(from Plymouth):) 🙂

[piatkazParticipant]

Hi Penny

I had an auto in January 2011 then a mini allo in June (brothers cells)It's been 9 months since my allo and at the moment all is still going really well,but as Shirley says you've got to watch out for the gvhd.The mini allo is designed to reduce the chances of the gvhd of which I've had three bouts of but all minor.ask as many questions as you like
All the best
Ian

[shirleyParticipant]

Hi Ian,hows you today,i've just read your thread to Penny,can i ask you, are you suffering with this GVHD,if how has it affected you. I've been quite poorly with mine,had a couple of stays in hospital,i stared of with cold sore on my lips,ulcers and blisters in my mouth & tongue,then it affected my eyes,but its badly affected my breathing,i've now have 1 damage lung,so i can't over exert myself on jobs around the house,i can't walk very far,so i now have a wheel chair,i have liquid oxygen tanks around the house to help me breath easier,other than that i'm feeling great,i'm coming up to my 1st yr in remission,. I do hope your coping better with GVHD than me,and i hope i haven't scared Penny. Just remember Penny we are all differant in stages of our treatment,this is my experience that i'm going through,i wish you well,as i said before ask me anything you like,ok best wishes Shirls 🙂

[piatkazParticipant]

Hi Shirley

I'm feeling really well at the moment I had issues with gvhd but mainly skin issues itchy palms and all the skin peeling off,itchy eyes,skin all over coated in a red rash still a very slight red tinge on my chest had a skin biopsy to prove it was gvhd.I have been lucky that it hasnt got to my organs so far so have been lucky havent had a stint in hospital yet dont know if the chances of more gvhd reduce the longer you go on its been nearly 9 months now.As Shirley says there are a few of us who have been on this treatment so any questions are welcome
best wishes Ian

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