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Decisions

Hi All

Having failed DESTINY on half dose of 200mgs Imatinib in the final month, and returned to full dose from Oct 2015 ,in June 2017 I went down to 300mgs of generic imatinib as my PCR results indicated I had been at MR4 since Sept 2016 and i wanted to reduce my dosage if possible.  I have just had my latest January results from the lab reading and this picture is emerging:

July 2017 -0.0025

October 2017 - 0.0054

January 2018 - 0.0086

This may well be a (miniscule) upward trend although neither myself nor my haem are worried. However I see him in clinic on the  29th and I think I may have to decide whether to keep on the 300mgs or go back to full dose of 400mgs - which I don't want to do as I feel so much better on the lower dose..

My instinct is to stay on the 300mgs and see what happens over the next couple of tests ( 6 months altogether). In fact even if i lose 1 log I would still be in the safe haven on MMR.

Just a somewhat unscientific thought - what would you do?

Best to all

Chrissie

Hi Chrissie,

I wouldn't change anything. I'm actually in a similar situation to you at the moment - dropped dose, but saw a small spike soon after. I'm holding firm for the time being.

In your case, 0.0054% is about (rounded) 5 in one hundred thousand and 0.0086% is (rounded) 9 in one hundred thousand. Not much of a change really! And that's before looking at the quality of the test (number of DNA samples checked).

David.

Hey, chrissie! I would wait some more time. maybe one or two more tests. If the upward trend continues, maybe you can have 300mg and 400mg in alternate days. Good Luck. As david said: your last 2 results are the same.

Thanks to both David and Lucas for replies which chime with my way of thinking. it's so low anyway I'm not worried.

best

Chrissie

Hi Chrissie

You are in a better place than I am - after some time on 200 mg of imatinib, my PCR was up to 0.06 in October 17, and I went back up to 300 mg.  I had my latest test today, and am hoping that eventually I may be able to get back to 200 mg.  It's not too bad, but the cramps have been worse since I went back to the higher dose. Also my haemoglobin is down a little.  Still well within safety levels, but perhaps I need more spinach!

I hope your next test is down again.

Olivia