Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
hi all I'm having a allo stem cell transplant soon I've had an autoglass one but I'm really scared about this one I can't get my head around it I'm having a high risk one as they can't wait 3 months to reduce the suppressant of the host cells as I'm only in partial remition so there's are trying host verses lymphoma so I'm worried about GVHD has any one had a similar exsperience or any helpful advice
Hi Jim Jim101 and welcome to this corner of the Online Community but sorry to see the reason behind finding us.
I am Mike Thehighlander and I help out around the Stem Cell Transplant (SCT) Forum.
I lived with a rare type of T- Cell Lymphoma for over 14 years before I had to get stronger treatment and part of this was two Allo SCTs with Donor Cells from my big brother - it is a long story but if you hit my forum name Thehighlander you can have a look - but make a cup of coffee or take a dram with it.
I went into both SCTs not in remission. This was due to my NHL being a skin Lymphoma and we could not get my skin perfectly clean and as my clock was running down we went for it and rolled the dice......
My team were rather pleased when I had GvHD during my second SCT as it showed that the battle between my brother and my immune system was actually working........ I had no GvHD following my first SCT and it failed within 5 - 6 months.
I won't say it was a simple journey, but fighting in a battle for life can be hard........ but after living with my condition for over 17 years I was told I was in remission in September 2016.
We are around to answer questions as most things that can happen one of us have experience in.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Just wanted to say you’ve every right to be feeling worried given where you’re at, it’s normal and natural. What I will say is if you’ve done the auto, you can do the allo - the process is almost identical. GvHD has a greater likelihood of happening (you can get it with an auto too but much less likely) but you might not get it. They say it’s good to have some of it (to kill the cancer) but you don’t want too much of it. The medical teams are getting so good at them now, they’ll do everything they can to keep you walking down the right line. At this stage, all you can really do is take each day at a time, focus on what’s immediately in front of you and nothing more. Keep plugging away, that’s it really. You’ll find some great support on here Jim so please use it when you need it.
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Hi Jim is it still FNHL they are dealing with or have you had any transformation?
please don’t worry overmuch (I know, that’s easy for me to say but all but impossible for you!) as a) they are getting very good at handling this these days, and b) once you’re safely engrafted the graft versus lymphoma effect should help lots.
Daughter (resistant refractory HL) was in hospital just after a lass who was not in remission but went straight into a complete remission after her allo.
Thanks for your advice sounds like you have had a rough ride
Cheers Greg your right I don't have any other choice as they have tried every thing else and my lymphoma is a nightmare
yes it's still follicular lymphoma but behaving like it's transformed I have had several biopsies over the last 4 years to try and prove different
Hi moomy thanks for the couraging words
Jim if its still undetermined what's really happening it may be worth discussing post transplant maintenance treatment as I believe this has been done in some post transplant scenarios in both HL and NHL, rituximab is one possibility but they also have been trialing some of the newer drubs like Ibrutinib either on its own or in combination. I guess in your case its understanding the profile of the biopsies, what expressions are identified and which or the array of drugs bets target them or block them.
yes it's hard to know what's best I just leave it to my team who I trust in
Hi Jim! I'm a few months post transplant - had mine at the queen Elizabeth in Glasgow and four days after discharge was straight back in with stage four GvHD and got hit with all sorts of treatments to control it. It wasnt pleasant, I'll be honest but the team in Glasgow (and no doubt wherever you will be treated) are very specialist and excellent at their jobs, they know what to look for and how to react to keep you in the best possible health and will pull out all the stops for you if you do happen to become unwell - which fingers crossed you dont. Although remember, a little bit of GvHD can be a good thing for controlling and fighting your disease!
Happy to answer any questions about how the team tackled my GvHD as I got hit with lots of treatments to save me, because I didn't respond favourably to the steroids they usually use to treat. Good luck with your transplant! X
thats good to here that your the other side of transplant and doing well and reassuring for me to try and get my head round all this I'm currently in hospital now after picking up a bad lung infection ended up in ccu for 2 days after my lungs were drowning on the mend now hope to be home in a day or two and wrap myself in Cotten wool until the transplant Best of luck
glad to see you’re doing not too bad. Katy isn’t on this forum, however I tell her about you and she said if you fancy meeting up one day when you are feeling up to it, she’d love to meet you, and I would as well. Katy is doing really well, they have said she can go back to work ( phased return) but can’t go on her usual ward which is sick children so she’s meeting with occupational health this week to see if they can offer her something that doesn’t involve sick children
she has started her immunisation programme now but it’s the measles one she can’t have until 18 months post transplant at least and what puts her at risk with the kids. So hoping you carry on recovering well, we’re off on holiday tomorrow for a couple of weeks so maybe see you when we get back x
Good morning Jim Jim 101, as you can see there is life post Allo SCT so be encouraged that the hard work is all with it.
Have you been told what conditioning they will be using to jet wash your immune system?
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