Baby Talk Part 2

So play it forwards and I’m back at the post transplant meeting with the transplant boss. She’s told me that it looks like my stem cell transplant hasn’t worked, then she’s told me that I’m unlikely to respond to Revlimid, then she’s told me that there will never be a match for me and then she’s suggested a cord blood transplant which she would be willing to give a go. 

She explains what is involved and the risks and benefits of the procedure. The risks are numerous from failure to engraftment, meaning that the cord blood stem cells don’t take in my bone marrow so I could die because my bone marrow has been wiped out by the conditioning chemo I will receive prior to the transplant.

Then there is high risk of infection whilst I am neutropenia and waiting for the new stem cells to engraft and also for the next year or so.  A  clean diet must be followed for 6 months and travelling abroad is not possible for 6 to 12 months. Hence all the holidays! 

Then there is the risk of acute graft versus host disease for first 3 months or so followed by chronic GVHD after that as a long term issue. GVHD is where the new stem cells don’t like being put into my environment and attack it causing to skin, gut, liver or organ problems.

And of course whilst all this is happening there is the possibility that the myeloma is coming back. The good news about getting GVHD is that hopefully it means that the new cells don’t like my myeloma cells either and attack them too, as long as the myeloma burden is not too high. And that in essence is how a donor transplant works whatever the source of the stem cells ie adult or cord blood.

So the benefit is that it could give me a new immune system that deals with the myeloma cells and kills them in a way that’s my own fails to do. That is if I survive the procedure and don’t get any life threatening infections or life threatening GVHD. This graft v myeloma benefit could last a long time, as I said before a small proportion of people do last a long time and maybe die of something else. Or it could more likely according to the consultant last a year or two. I have to view it as extending my treatment options rather than a cure. When I relapse I should be able to be retreated with previous treatments that I may have been resistant to as my immune system will be different as well as being able to try any newer treatments that have come on to the market so it gives me more options with the remote possibility of being curative than I seem to have if I don’t have it.

If the stem cell transplant looked like it was going to be a success the decision would have been more difficult as I could perhaps count on 6 months or so remissionthen perhaps a slow relapse before I needed to start treatment again. But the way it was told I didn’t seem to have many options not being one of those patients that seem to do well for a long time on treatment. I’ve been quite heavily treated and the more treatment you have the harderand stronger a different myeloma clone comes back.

I left that meeting feeling overwhelmed and upset but more or less deciding to go ahead with the cord blood transplant assuming there were cords available and my light chains had not risen significantly further. I would have a 3 month post transplant bone marrow biopsy to find out. Then I thought of more questions to ask after I left and had a second meeting with the boss to talk it over again the next day.