Cycle 4: Day 6 – Where is it all going?

God I’m feeling miserable today. No apologies. So sorry if you’re looking here for any inspiration or positivity!!!

I called up the hospital to see whether they had my paraprotein results back in, and sadly they did. They’ve gone up from 27 to 28. Now I know this is only a rise of 1, and I know lots of people will tell me it could be a blip, or blah, blah, blah, but having talked to the consultant last week, I am pretty convinced that she will see this as a fairly strong indication that I have stopped responding to the Revlimid. Gutted to say the least.

It’s been a weird week anyway since I went in on the 15th. I almost feel like I knew this was coming, but it hasn’t made it any easier.

So now I’m not quite sure where I stand with it all, especially being on the trial. I believe that I will be classed as having had a partial response as overall I’ve gone from 50 to 28. I think that means that now, I will be randomised to either go onto Velcade for a while, or to go straight to transplant. Now I need to do some research, but my understanding is that if you have a transplant without being properly in remission (i.e. without my paraprotein and bone marrow having reduced enough) that I wouldn’t get as long a response from that transplant. So I can’t see myself staying on the trial if I got picked for that option. Every month counts so much to me with Nick and the kids, and I can’t even contemplate shortening that for the sake of a trial.

I think the hard thing today is not knowing where we are going, and how long it will be before I do know. My nurse specialist is on half term this week so there is no-one to ask what happens now? I don’t know if they’ll keep me on the CRD until the end of this cycle, suggest I go and see them early and change the drugs, or what. So I think Nick and I will sit down tonight, talk it through and maybe draft up an email with all of our questions. I’m