Friday, 27 May 2011

Countdown to zero!

So it was the end of cycle 3 meeting on Tuesday, but I thought I'd wait till now to update you as I don't get any figures until a few days aferwards.

So, where I was at 12, I have dropped down to 8....single figures, hurrah!!! They have said to me since the beginning that 'under 10' is what they aim for before they like to start on a transplant so I am really happy to finally have reached that....even if I plateau now, I am at a fairly good level. And if you consider that they were going to do a transplant (if I'd got randomised to that) when my paraprotein was at 27, this is SO SO much better!!

The other good news is that my other blood counts look a bit better stem cell injections this cycle which suggests that perhaps my bone marrow is starting to produce the cells on its own again...the white and red cells, and my neutrophils....all good news as these are what compromise my immune system.

In terms of the neuropathy, they have now reduced my dose. Hopefully this won't impact on my speed of response, but it could do. They said that it was important to do this as whilst velcade doesn't normally cause long lasting neuropathy damage, it can do. So it is crucial not to have me at a stage that I can't cope with the pains, as if I was left with them I could be permanently disabled so to speak. It is a shame, but to be honest, I'm not sure I'd want to cope with much more in that area. My feet nearly always feel like they're burning off which isn't nice at all!. The calf pains have reduced the last couple of days, and I'm hoping it will stay like that. What I didn't ask is whether they would up my dose again if things get better but my counts slow down...there's a question for next time!

Anyway, half term starts today so no rest for the wicked, especially with two hospital appointments in the middle of it! Luckily my sister is around to help with the kids so that is good! Just have to work out how to rest in the middle of it all.

So in terms of timescales, for those who have been asking, we're still not much clearer! From what I can gather I will at least go through cycle 4 (this one) and cycle 5. That is another 5 weeks from now. If I got down to zero by then, I'd probably be looking at 4-8 weeks after that for the transplant....likely to be more like 8 weeks by the time they get the results of a bone marrow biopsy and get all the dates booked in.

However, they can give me up to 8 cycles of velcade and so if I had the extra 3 cycles, that would be an extra 9 weeks onto that timescale. So I think (!) that the latest I would have the transplant would be mid October, but it could be anytime between mid August and then depending on what happens with my paraproteins. Clear as mud?

Right, no sleep last night (tried to go without sleeping tablets...bad mistake mid steroids!) so am exhausted and going to chill out now.


  1. Good news... and I will continue to intend that the numbers are dropping (in the right way) and that you get some sleep!!


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