I haven't posted for a while because we went on holiday a couple of weeks ago to Spain....really nice to have a break away from everything that had been going on. We went with Nick's parents and even got a few days in Barcelona (kids free!). It was a great time and the kids loved it....Sam learnt to swim with no aids and Rebecca got better with her breathing too (swimming that is!).
We went in a slightly strange position. I had my final consultant appt with the High Wycombe consultant on the Friday that we flew, only to find that my haemoglobin had gone back up to 11.3....really nearly on the normal scale and around where I was when the whole thing kicked off. He was gobsmacked and so were we. We didn't really know what to say to him as it was the last thing we had expected him to tell us - everyone had been so quick to tell us that my hb wouldn't go up and not to expect it to. He said that if I was being treated by him still, that he wouldn't start treatment yet and that he'd just watch what happened for a bit longer.
As it is, we're moving to Prof Morgan at the Royal Marsden and so it will really be down to him. He wants me to have a fresh MRI scan, bone marrow biopsy (not very nice!!!) and some other tests to check where I am. But what we don't know is whether he would still recommend treatment if that were all the same as before and my hb stayed where it was. I have to say, I think we'd push to hold fire if that was the case....I don't want to risk getting bone disease or kidney disease, but in the same way I don't want to start treatment unneccessarily.
Anyway, I have an MRI booked in for Wednesday and am going to try to get some of the other tests done then. I'd just like to know where I am with it all really. We'd just made all the plans and then it changes....round and round we go. Not that I am knocking that I might not be progressing of course!
Right off to treat mosquito bites on my kids and get an early night.
Will update when I know more!
What follows is not just my opinion: if you don't have any CRAB symptoms, it is not a good idea to begin treatment (Int MM Working Group guidelines). This instead IS my opinion, but it is backed up by my own experience and that of a few others in my acquaintance: my BMB in 2005 showed 50% neoplastic cells. That's quite a high number, and my (former) hematologist wanted to start me on Velcade, then go on to an SCT. Well, even though at the time I didn't know beans about CRAB symptoms, my gut told me no, so I told him no and made an appointment with the most famous Italian MM specialist who confirmed that I was right: no CRAB symptoms, no treatment. And the A in CRAB can easily be improved on, as you yourself have seen. Just some food for thought. And my best wishes! Ciao from Firenze! :-)
ReplyDeleteThanks Margaret, I can't see them trying to do that without CRAB symptoms, but having read up on it, you could argue my calcium at 2.55 falls into the 'C' category. And although it fluctuates, it is right up at the top end which could be enough for him to want me to consider treatment. But yes, we will definitely challenge if we aren't happy with the recommendation...the longer I can get without treatment the better...so long as it doesn't cause long term health implications like lesions!
ReplyDeleteI love Firenze (took us about two hours to realise where it was in English when we visited!!!! Lol!!!)
:-)