Monday, 21 February 2011

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 not sure I can wait for 3 weeks with this hanging over my head....not happily anyway.

It's strange really. When this all kicked off, I think I just believed that being young and healthy, that I would automatically respond to the Revlimid and that all would go well and that it would all be over by the summer. I never really thought of myself not responding. Goes to show that you can't take anything for granted.

Damn Myeloma....I hate it.


  1. I'm not gonna attempt a perky response - just know we're thinking of you and have a jug, I mean hug! :D

  2. No, no perky. upbeat B-S can take away the angst of waiting to know what to do and when to do it. But perhaps Paula's suggestion to have a jug is a good one right now!

    While you are waiting, can you take some curcumin? Or will that affect the trial you are on? I really do believe in that funny little spice, as does Margaret and she has a lot more data that I do on it.

    Intending and praying for some good news for you right now....


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