So, we went to the Marsden again yesterday to speak to our lovely lovely consultant and I have to say, I have walked out a little bit more confident, if a bit sorer (will explain in a bit!)
Faith was very keen to say to us that she doesn’t see my response as a failed response, but more as one that whilst not as good as it could have been, has still been a response nonetheless. We talked lots about where my ‘standard’ paraprotein might be, and that it may be generally higher than other people anyway, and that if I had a bone marrow biopsy (bmb) that my bone marrow could have reverted back to under 10% despite my paraprotein still being relatively high at 28.
We then talked about the options moving forwards. She is fairly confident that we have now seen a plateau in my results, but we need to wait till the end of this cycle so won’t get the results of that till around the 22nd March. Given this, I would then get randomised onto either velcade or transplant. Now obviously, the transplant was something I was really nervous about having heard bits and pieces about it being better to be close to complete remission before you go in for it. She has said that there is no concrete proof on this, but that this is why they have added the velcade option to the Myeloma XI trial to see if there is any indication that a better initial remission helps post transplant.
However, she seems to truly believe that it is the 3 months post transplant bmb that is the important decider in how I will respond to treatment, and was very keen to say that it would be fine to use the velcade at that point instead, if I wasn’t responding well to the transplant either.
So we feel much better about it as an option. We also asked her about what would happen if we were uncomfortable about the option that came out of the randomisation, i.e if I got put to transplant but didn’t want to go ahead. She felt that it would still be dependent on the results of the bmb and my paraprotein but that the reality was probably that she would still be moving down the transplant route! So it seems like there would be nothing to be gained by coming off the trial.
I only cried once in the whole process (!!) and she reiterated to us that she wasn’t worried at all about my results, but more about how I was with the whole thing. Normally, she would have waited till my next appointment on the 15th to do the BMB but she asked if we wanted to do it yesterday so that the results would be back around the same time as my paraprotein on the 22nd, which would allow us to start making the decisions. We pretty quickly decided to do it and off I went for the barbaric process of having a cork screw stuck in my back!!! I hate it so much and it hurts terribly, but it is over now for another 4 or 5 months I hope!!
So now we have to wait until either the 15th / 22nd to find out whether I will end up on velcade or on the transplant route, but at least it is only another 3 weeks.
We also found out whilst waiting for the BMB that they have provisionally booked me in for a stem cell harvest on the 11th and 13th April…scary as that would suggest a transplant around the end of April/ beginning of May but at least now we can start planning in case