Thursday, 4 November 2010

I'll beat it yet!

Where to start?
Well probably with the fact that over the past week, I have had a pain developing in my hip area....around where they do a Bone Marrow Biopsy. The pain feels exactly like when I had the biopsy too which made me wonder whether or not it was bone pain. It's so hard to know what bone pain feels like and I've had so many times where I've thought I've felt it, but it has just been stress causing it.....and I suppose there is a slim chance this is the same.

Anyway, I had my consultant appointment today and told him about how it felt, and he immediately told me that he wanted to start the treatment. He said that whilst we could wait a bit longer and see how things go, that with my high paraprotein levels, lowering (again!) haemoglobin levels, and now this pain, that he felt it was important to get on top of it before it caused me any serious end organ damage.

I know that there will be some of you out there thinking that perhaps I should fight this one and hold off longer, but to be honest, we choose this consultant because he was one of the best, and I really think we trust him to make the right decision here. I don't want any breaks or anything if it can be avoided and treatment now will hopefully give me a positive future.

So I will be starting chemo (CTD) 2 weeks today. CTD is Cyclophosphamide, Thalidomide & Dexamethasone. I'll take it in tablet form at home along with having to inject some form of blood thinner. It sounds like it'll last for around 3 months after which I'll probably have my stem cells harvested (no big deal I don't think!) in anticipation of a transplant sometime not too long afterwards. The chemo shouldn't cause the stereotypical side effects and I should keep my hair etc. It sounds like I may go hyper at times, exhausted at others, and perhaps swear at Nick a bit more often than usual (he can't wait!).

I'm feeling pretty positive about the whole thing - the consultant seems to think that because of my age/ cytogenetics etc that I have a really positive prognosis after treatment and that potentially I could have years and years of remission from a transplant.....and that is such a great thought after what we had originally envisaged (2 - 5 years in total! Damn those out of date internet figures!)

I probably have much more to say, but it's been a pretty exhausting day so I'll leave it till later in the week.



  1. Hi Deb;

    I've had the cyclophosphamide cocktail with slightly different ingredients. I received mine as an infusion all at once and did lose my hair.

    I agree that given your good cytogenetics you will likely respond well to a transplant. I've been in a drug free remission for over two years.

    Good luck going forward.

  2. Thanks goodbloodbadblood!!! Cool name! Sort of sums the whole thing up.

    Well done on 2 years remission and I hope that you see many more!


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