Meeting with the Transplant consultant

We went for a meeting with the transplant consultant yesterday. We thought it was just an introduction and for him to explain what we already knew. It turns out it was a little more complicated than that.

The meeting didn't start off well, I really fancied a diet coke and Rick went for one and came back empty handed? The consultant then turned up with his can of diet coke and made me look at it for the whole meeting. I was tempted at one point to ask him if he was actually going to drink it as if not i gladly would of. Thought against it seen as it was our first meeting.

That was the simple bit of this update, the rest gets a bit heavy and a bit complicated so leave now by all means.

I had thought it was a given that i would be having an autologous stem cell transplant, ( a transplant using my own cells ). Although this is still complex and not particularly 'nice' it was manageable and recovery after was quick ish and i could have thought about work within 3 months. The Dr explained that with practically everyone with lymphoma this would be the plan, however he was concerned that my disease was just too aggressive and even with an autologous transplant the chances of the lymphoma coming back after were very high.

He suggested that we may need to consider an allogenic stem cell transplant, ( a transplant using a donors cells ). This is a much bigger more complex procedure and if i had it there would be a 30% chance i wouldn't survive the actual transplant. I would be on anti rejection medication for life ( carries its own risks ),  wouldn`t be fit for work for at least 12 months, and a high proportion of patients have to live with graft vs host disease for a long long time or forever and can never work. This is where my new immune system from my donor attacks my body constantly. The symptoms can be any thing as depends what its attacking but can be debilitating and render me " proper broken".

Why bother i hear you ask! By taking on someone elses immune system that would fight off ( to a degree) any little bits of lymphoma around = anti lymphoma effect. This means it increases the chance of being cured. So its trying to weigh up the risks vs the benefits.

Just when it wasnt sounding a very nice option he said that most people have a low intensity allogenic ( donor cells ) transplant as their bodies wouldnt tolerate any more, but as my lymphoma is as aggressive as it is, and i'm young and 'fit' ( not sure i'm feeling very fit!) he would like to potentially try a high intensity allogenic transplant.

The other issue with a allogenic (donor cells) transplant is that i would need to find a donor. This can sometimes be easy and sometimes be really difficult. It will depend how common my tissue type is. Its not like a blood test where you are an A- or O+.you get 5 markers from your dad and 5 from your mum so you have 10 different markers. So i need to find someone that has the same 10 as me. Siblings have a 25% chance of being a match but the rest of your family are less likely than the general public.

David is (actually at the time of writing this ), having his blood taken although we are realistic that there is a 75% chance he`s not going to be a match, but you never know! The test takes 2 weeks to come back. After that if im not a match with david they will do an international search and then we will see if its easy to find a match.

The Dr didnt know which route we will take yet as it is dependant on so many things. If we cant find a quick and easy donor ( uk based or europe with a quick collection time ) then i may just have my own cells. If i cant achieve a negative PET scan an autologous ( own cells ) wont be an option as it it almost guaranteed not to work. Either way im glad its his decision and not mine, his life is quite literally in his hands. He better look after it!

On the positive side he said what ever we do we are going to do  we will do quick. He wants the transplant as soon as we have PET scan results which means it may be end of October rather than December

I apologise if you have made it to the bottom as your brain may now be as jumbled as mine!