I was at the Hospital on Liverpool on Friday where I got the results of my latest paraprotein levels. Guess what! They have gone up again. They were 13 now they are 23. They will probably continue to rise.
There are a couple of things that we are going to do, we being the doctors and me. The first is to increase the steroids that I am on with the Lenalidomide, I’m not back on the three day pulse of 40mg, which is 20 tablets for three days at a time. They are hoping that this will stabilise the paraprotein as the combination of steroids and Lenalidomide is the way that they manage it’s effectiveness. I’m already on the full strength of Lenalidomide, so they have changed the Dexamethasone to see if that works.
Once the cell have been extracted they are infused into me, the same way as a blood transfusion or injected into me through my Hickman line. There is no stay in hospital as it will all be done on the the same day and there isn’t a need to stay in.
The plan is to do the DLI as soon as possible, for obvious reasons.
The increase in Dexamethasone will make me immunocompromised, more than I am now, and the DLI will also do the same.
There are risks with the DLI as there are with everything else. There is a 5% chance of death, which again compared with my chances if I don’t do is nothing to worry about. In very rare circumstances it can destroy the bone marrow all together (which again would lead to death). I will need to keep an eye on graft versus host disease (GVHD), I’ve not had a real problem with that so far, only with the dry skin that I use the double base for every day.
Hopefully this will work for a bit longer, at least longer than a few weeks, which seems to be the norm for me as everything I have tried has failed after a few weeks.
Going back to some other issues, the CMV doesn’t seem to be a problem as that has checked out OK from the slight anomaly I had a few weeks ago with both myself and Nigel being CMV negative, one of the results came back showing a slight CMV+. We don’t know why, but it isn’t showing now.
I’m still waiting on the Chimerism results to see if my DNA is the same as Nigels (i.e. the transplant has taken successfully) I’ve had a partial result back last time, which was 90%, so I expect that to be 100% this time. Although the transplant was/is successful, the effect on the myeloma wasn’t, hence the reason I’m on the Lenalidomide already, before the transplant process has completed. If I hadn’t started on the tablets, I would already be in a worse situation than I am now.
My blood results were OK on Friday as well.
My Neutrophils are a bit low, but I expect them to climb back up again, I will find out on Wednesday.
I’ve also been in a quite a bit of pain with my back this week, although it has eased off a bit today, but I’m still not sleeping properly. I’m taking the sleeping tablets, but with the back pain and cramps that I have been having in my feet and legs, I’m not getting a chance to have a proper sleep. I doubt very much I will get any over the next few days with the amount of steroids I’m taking now. I will just have to see how it goes and if I can, catch up on some sleep during the day.