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1 Year since diagnosis -Update

I thought I would share this as I have found so much encouragement from reading other peoples posts.

Today I had great news from my consultant. Following my latest bone marrow test I have been told that my levels are now where they should be after an initial slow response.

My Bcr/Abl results at diagnosis 06/12/2013 were 66.5%, dropping to 10.9% by 17/04/2014; 5.1% 26/06; 1.687% 04/09 and today 11/12/2014 at 0.0025%.

For the last 6 months I feel have been living under a cloud because I was not sure whether I would have to change medication (400mg Imatinib daily) which I am tolerating pretty well, except for tiredness, and some nausea for an hour or two after taking my tablet.

I wish everbody else well and hope that you all have a good christmas and a happy new yesr

The first few months are difficult for almost everyone, but you're doing very well indeed! For the nausea, I suggest plenty of water and food when you take the pill. Tiredness we can't do much about, sadly.
Happy Christmas.

Hi Martin,
Well done, you have achieved a very good molecular response - 0.002%- within 12 months which is one of the recommended goals for optimal response according to ELNet guidelines:
http://www.bloodjournal.org/content/122/6/872.full?sso-checked=true

So you are probably very happy - I know I would be! Thanks for keeping us updated on this forum. Have a good Xmas and an even better New Year.

Sandy

Hi martin. Congratulations for the great results!

today it's my first year since diagnosis. like you, my response was not great for around 7 months (6% pcr at the time) but i had to change to nilotinib. I hope i can have good results like you soon but i decided not to worry much about cml and live my life. i can say i'm a much more positive person now. Good luck on your journey!

Hi Martin

Many congratulations on your excellent response.

With regard to nausea, I also take Imatinib and also suffered nausea for an hour after eating and taking my tablet. I have found that a small piece of cheese after the meal stops the nausea. My haematalogist thinks it's maybe to do with the fat in cheddar. Just a thought.

Enjoy your Christmas,
Best to all
Chrissie

Hi Martin

In the early years (I've been on imatinib since 2009 - now on DESTINY at reduced dose) I often had nausea if I got the timing wrong. For me, taking the tablet about 15 mins to half an hour after a meal worked better than during it. And I found dairy (cream and milk not cheese) made things worse, so I avoided deserts involving cream or yoghurt. Best results were when I had something starchy like pasta, rice or potato. And if I took the pill with juice (diluted) rather than just water (the metallic taste of imatinib made things worse when I got it wrong). Generally, once I followed that regime I had no nausea.

Now I'm on 200mg, it's all much easier. It's almost a non-issue.

Best

Richard