Well I had some bad news on Monday, it looks like my second transplant didn’t work! The transplant itself, seems to have gone OK, at least so far. I have started to experience the Graft V Host disease symptoms that they want to see such as the skin peeling on my hands and now as well as my feet. I woke up on Tuesday morning and the skin virtually just fell off my toes and souls of fee. It is very similar to sun burn pealing. They are monitoring my levels very carefully to make sure that they balance my immune system with ciclosporin and steroids at the moment. I will still have to be very careful that it doesn’t take over too much, so my body doesn’t reject it altogether, but so far so good.
The point of having the transplant though was to either reduce the para-protein or at the very least stop it in it’s tracks from climbing further. I knew from the start that my levels were unusually high to even have the transplant, they like them to be as low as possible. If you recall I started on the Lenalidomide for about three weeks prior to transplant to see if that halted it as the Velcade I was on had stopped having any effect and it was already climbing prior to going if of the SCT. As mentioned I was told on Monday that they had already started to climb. Something that shouldn’t happen if the the SCT had worked on the para-protein.
This puts me in a bit of a difficult position as to what to do next. They can’t just wait for my transplant to process to completed as the the para-protein could climb even higher and go completely out of control. If they start to treat the myeloma (para-protein) whilst I’m still going through the process of healing from the SCT it could effect the recovery in some way.
The plan at the moment is that the SCT team are going to discuss with the Myeloma team to see if they can come up with some kind of solution to try. It may involve going on the Lenalidomide or just maybe pulsing some Dexamethasone to see if they can hold it off for a few months/weeks.
There is no guarantee though that anything they try may work. I’m in unknown waters at the the moment and don’t know even after the SCT had taken completely and they tried me on the Lenalidomide that it will work at all on me. It may do or may not.
The last few days have been quite emotional, having to tell the family that yet again it hasn’t worked and of course people are feeling guilty that it is somehow there fault (i.e. my brother) but of course it isn’t in any way. The transplant has worked but because of the Myeloma being so aggressive and progressive in my body already it just hasn’t worked on the Myeloma, which is nobodies fault!
The prognosis now is unknown, but I’m going to try and stay as positive as I can. It’s been difficult, especially while on the the steroids, as they make me even more emotional than usual.
I do feel better after telling the family and everyone having a bit of a cry. My plans having changed and my usual statement stand's ‘I’m not dead yet’
It’s just another hurdle that I will have to get over and find out what the next step is to try to extend my life as much as possible and then deal with that.
I was at the Royal today to have bloods checked as usual and going to have a couple of units of blood tomorrow (actually today as I’m typing this – Thursday) at Chester and then back to the Royal on Friday for another check prior to Christmas. Hopefully I won’t have any issues and Charito and I can have a nice Christmas day together, with my body fully charged up etc.