Allogenic stem cell transplant in 3 weeks

Hi Jim  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.

Hi Jim,

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.

Greg

Hi Jim is it still FNHL they are dealing with or have you had any transformation?

Hi Jim,

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. 

Hugs xxx

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

Hi John 

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.

Good luck  

John 

Hi John 

yes it's hard to know what's best I just leave it to my team who I trust in