Off to the Marsden with my big sister today (Nick and I decided he needed to get to work and make sure they let him keep his job!) for what we thought would be a relatively quick appointment. Oh why haven't we learnt our lesson???? In at 10am and out at just before 2pm....urrrgggghhhh!!!
Anyway, 2.5 hours after giving blood and having my zometa (which is a bisphosphonate to strengthen the bones) we finally got in to see one of the registrars....now I sort of wondered if this was a sign as I was pretty sure that if there was anything major to be told, or anything that was going to be changed on that day, that I would have been told to see my consultant not the registrar. Ominous from the start!
So results: Well, my hb (haemoglobin has dropped down to 10.8 again but nothing too worrying, and my total protein has gone down too. Now it isn't a straightforward link, and you can't rely on it, but seeing your total protein drop can often be an indicator that your paraprotein (pp) has also dropped. And to date, this has been the case for me. Now, I was slightly surprised at this, and therefore forgot to ask the obvious question - 'if when I get my paraprotein result back it has dropped by around 5 again (what I expect it to drop by looking at previous results) does that mean I haven't plateau'd after all, and does that mean that I would stay on the revlimid?' Scenario 1 - question unanswered! (Or not even asked!)
So that was the pp level and hb. Now to the bone marrow biopsy. When they do this, they do two bits; a 'trephine' and an 'aspirate'. Don't hold me to this description, but I think that the trephine is where they actually dig into the boney bit of the bone marrow, and the aspirate is where they suck up the more liquid bit. Apparently it is easier for the myeloma cells to avoid capture in the latter, but my results for that were back and the great news is that it hardly showed any myeloma cells. The less positive news is that it is the trephine that is more reliable, and they are expecting that with my paraprotein level still being above 20 (and it probably will be even with a drop) that the trephine will show a higher level of myeloma cells. BUT, I think they might be wrong, Dr Gascoyne that I am!!! lol!! But seriously, when I was first diagnosed, I had a pp of 32 and my bone marrow was just under 10%. So why this couldn't be the case now, I don't know. And if it is under 10%, they would normally be prepared to do a transplant and see it as really positive.
Now, the registrar seemed to suggest that if both the bone marrow biopsies came back really low, that they would be concerned why this was the case, when I still had a high pp. She sort of wouldn't answer what would happen next, so whether they would do other tests, I don't know. The only thing she did say is that sometimes, it is because someone's myeloma is in patches, and that they may have missed it when they did the biopsy. Which could mean another biopsy next week I presume :-( Not nice as I hate them.
So scenario 2 is that if my bone marrow has dropped and my pp has dropped but still only enough to class as 'no response, I would go straight onto 4 cycles of a drug called Velcade (12 weeks in total)
And scenario 3 is that if my bone marrow and pp have dropped enough to class me as having had a 'partial response' I would go into what I have described before which is a randomisation as to whether I have Velcade or Transplant.
So 4 hours later, and sadly we're not much further on with the whole thing. In fact, the concept of staying on revlimid has come back into the equation. I have to say that it's hard to know what I would like now. The later we can do the transplant, the later it is that the clock starts ticking again, and hopefully every month means an extra month for me in total. BUT, the idea of going back onto the revlimid and it potentially not working while I'm on it doesn't appeal - why would it? The idea of being on drugs that make you feel rubbish but don't lower your levels isn't great! And the idea of being on velcade? Well I don't mind that one so much.
I am a bit happier as the registrar explained to me that when they harvest your stem cells, the myeloma ones don't tend to go into the machine and so that is why it doesn't matter so much if my pp is still highish when I go into transplant. So once again, the transplant has become less stressful as a concept to me.
The other thing today was that the registrar was actually a pediatrician doing some work on myeloma. It is the first time I have been asked about the children and how they are coping. And what was nice was that she said she would go away and look into the support the hospital could offer/ point us to that might help us in telling the kids more about what is happening both now and in the future. At the moment they are too young to know too much. They certainly don't know about the fact I am more than likely to die from this. But one day they will do, and we don't ever want them to feel we have lied to them or misled them with what we have told them before. It's been hard this last week and I've thought about them a lot and how it will affect their childhood. I've cried quite a lot too with it all. They don't deserve any of this - none of us do, but especially not them. A friend has had a hard time with one of her children too and that has really brought it home to me how this awful disease causes so much pain to everyone.
But that is a sad note, and hopefully now we have started the process to get some help with how to deal with that.
Anyway must go....it's been a long and exhausting day. Take care all x