I went to my appointment with some trepidation yesterday. Although things have been going well with my treatment, everything I've been told so far is with regards to my Haemotological status and as good as it is to know that my blood counts are normal, it's always at the back of my mind that the old style drugs could achieve the same results. However with the new drugs, the disease should be affected at a molecular level.
Up until yesterday I didn't know how my cytogenetic response was? In short this is the molecular response i.e. is the Imatinib inhibiting the signal and stopping the mutation taking place.
Anyway the short answer is yes the new drug's working and in absolute spades. My BCR/ABL score has gone down from 107% to 8%. Don't ask me to explain what this means, because my consultant told me twice and I still haven't got a clue. However, she said that she would hope for a response like this after 6 months and actually it's occurred in 3. She has however warned that it may not shift at all in the next 3 months and may in fact bobble about a bit and this is just the way individual people respond to the drug.
Ultiimately they want to get me down to a tiny fraction of a percent at which point they can claim molecular remission, so I've got 15 months to wipe out this 8% and I'm going to try bloody hard at it.
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That's fantastic news Six, medical numbers can be confusing so I wouldn't worry about trying to understand them if the consultant says it's good then it's good.
Thanks Paul. I've just remembered something, I've reduced my BCR/ABL by 2 log. No still doesn't mean anything.
Wonderful news Six for you and for your family.
How's the chest?
Excellent news...also 2 log is MASSIVE... i.e 1 x 10 to the five down to 1 x 10 to the three would be a 2 log reduction (fucking loads bacically!)
I can't help but think your attitude helps...some people are all 'woe is me' and 'I'm so ill' so that in fact they become MORE ill.
Sounds like you're doing great! :-)
...I don't suppose the rugby is helping though!
Great news, Six!
My wife and Span agree : people who have a beligerent attitude towards this sort of thing seem to have a better prognosis.
I'm glad things are going well.
BTW, how are Nic and the boys?
Thank you Mags, the chest is fine thank you. My consultant whacks me on penicilin at the first sign of any infection. It's funny to think that before GPs were reticent to give me antibiotics and would tend to take the see how it goes approach. But now 'whack him straight on' he's got other things to worry about.
Similar thing came up at work the other day. I've started taking sugar in my coffee again and I was complaining that I really should give it up. A colleague said to me 'you could take sweetex...mind you they're supposed to be pretty bad for you' to which my reply was 'fuck that I've got bigger things to worry about'. I didn't mean it nastily and she did laugh as intended, but things get put in perspective.
Hey Span, Yes she did say it was huge...and my results were amazing as well. That one's for you Span.
By the way, is there rugby on at the moment, it seems to be passing me by.
Hey Shy, i've been a bit less beligerant of late, little bit more fragile but I'm getting back there. I started a group called 'bollocks to chronic myeloid leukaemia' on facebook, which has been good though, I've got in contact with loads of current or ex sufferers or relations of those that have lost loved ones. And we all rejoice and say bollocks to it basically.
Nic and the kids are well. Eben turned 4 last week and with it has become a mischevious little bastard which Nic's finding difficult, doesn't help that I'm at work so late at the moment, which reminds me I should get back to it.
Good luck with the facebook group. Seems a very good way of utilising the resources of the site. I'm thinking of starting a 'am I the oldest person on Facebook' or 'born in the sixties and proud of it' group because it depresses me no end all these young folks!
"Born in the sixties"??????
You're just a wee bairn! It was 1955 when I entered the world!!!
Shy, carry on talking like that and I might just make you an offer...a wee bairn, I like the sound of that!
You'll have to be careful what you say Mags: I now have an inage of Shytalk cowering ubnder a desk whilst you try to demonstrate your offer! hehehe...
Six...seems things are picking up...we beat Tonga by actually playing reasonably well! Bring on the aussies!...gulp.
P.S. Bollocks...like ity! ;-)
Six, I'm so pleased your blood test results were so good.
You're doing really well, love to you and all your family.
That's most excellent news Six. Keep fighting the bastard.
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