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PCR results and diet change.

It's been a while since I last posted but wanted to keep a track on things and make sure that I was correct in what I was posting. I was diagnosed in Oct 2011with CML being 34 years old. I went onto Glivec first and this worked for a while then the PCR levels got to 1.7% and then began to rise. About 12months ago( approx.) I started on Nilotinib and after 3-4 months my PCR levels went to 0.7 %. I thought great and nothing to worry about. Then my levels continued over the following months to rise about 0.2 every 2 months or so.

I mentioned on one of my earlier posts from around the time that I was aiming to change my diet and shift work.

So I did, and my levels as of today are 0.4 % declining by about 0.3 every 2 months.

I will explain what I did, I made sure that I only take water with my tablets and cut out all tea and coffee/ caffeine based drinks. I no longer work nights as I am covered under the disability discrimination act and employers have to make reasonable adjustments to help out with your illness.

Anyway, I began one day stopping all caffeine and took the tablets with water/lots of it. After day 2 I began getting back ache( as I did when I first started in Nilotinib, this subsided first time after around 10 days). Again this subsided after 10 days or so and I kept a diary to record the aches and pains. I noted that the aches wore off after about 9 hrs from swallowing the tablet and then reoccurred after taking the second dose.

So to conclude the tablets optimum level in your system could be directly affected by something in your diet, IE food or drink.

I discussed this with my specialist and he agrees totally, and the packaging on Nilotinib clearly states not to eat Graperfruit but doesn't mention anything else.

However in my case it appears to be tea or coffee, I can't be sure if this is within a three hour window around the tablets or not as I have cut them out completely.

So for anyone out there who may be struggling with PCR levels on Nilotinib. Think about what you had in your diet when you first began taking the meds and what may be in it now that wasn't before. Try making sure you only have water around the three hours of the tablet and nothing else.

It appears to now be working for me!!!

Hi Neil,

Thanks for sharing that and I'm glad you're seeing a much better response - I find it really interesting as my PCR fluctuates around the 0.1% mark and I'm also on Nilotinib. I think the caffeine point is one for further investigation and it got me thinking:

For the last 3 years running my February PCR 'jumps' over 0.1% to the 0.14% - 0.19% range. Come May the result is typically back in the 0.04% to 0.08% range and is consistent in Aug and Nov; I had attributed this to vitamin D absorption. My thinking was between November and February I barely see daylight due to working indoors 8AM to 5PM and therefore a lack of vitamin D could have caused/contributed toward a PCR test result rise. Although you have attributed your improvement in PCR test to caffeine avoidance, it could be the more stable working day shift pattern allowing you to see more daylight and subsequent vitamin D exposure.

However, another hypothesis is that in the winter months I tend to drink a lot more coffee (I LUUUURVE Costa Lattes) and this could also be the sole cause or combine with the vitamin D exposure (or lack thereof) to a worse PCR result.

So, I reckon there are 4 potential hypotheses:

1. Caffeine absorption adversely impacts TKI effectiveness (or assists CML)
2. Vitamin D absorption positively influences PCR result
3. Another environmental factor we've missed contributes to impacting PCR result (fatigue, stress, other diet items)
4. Our CML response is independent of any of the above

I like the caffeine idea and I'm going to stay off it this winter and I'll let you know how it goes. If that doesn't work I'll buy a sun lamp for Xmas 2015!

Anyone else have any theories or what's worked for them?

Chris

Hi Neil

Great response and i imagine you are feeling much happier with that.

I rarely have caffeine in anything and tend to use de caff at home so i can't really say whether that has much of an effect but i agree that stress and fatigue seem to impact on results - i know i need a lot more sleep now than i did pre diagnosis and if i don't get it i feel that my results sometimes reflect that.

I did buy one of those lights that wake you up like the dawn - made a huge difference in the dark winter months so i would recommend that Chris!

K