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Latest BCR results

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Hi everyone,

I thought I’d share my latest results. After 6 years of treatment on 600mg of Nilotinib I’ve reached MR5 0.001. To say I am over the moon would be an understatement.

It’s taken just over 3.5 years to go from MMR to MR5 and 6 years in total to get here. Not the fastest of responders but as we say many times here CML isn’t a race but more a long distance run. And with that analogy BCR results are rather like lap times. Slow responders and those with plateaued results around MMR stay the course and hang in there it will come.

I don’t think it’s a coincidence but the last 6 months I’ve really taken care of myself mentally and physically by cutting out everything that’s toxic for me and that includes alcohol, social media and the news. I think our bodies and minds and very receptive to external toxicity. I’ve also been off work with pretty much zero stress and I’ve had a whole log reduction in the last 6 months. Some may say a coincidence but I am starting to believe more and more that the mind and body are one. And I believe persistent stresses and trauma of varying degrees have led to this diagnosis in the first place.

With that in mind be vigilant not just what toxins we allow through our mouths but also through our eyes, ears and our hearts. I believe every cell “hears”!

I hope you’re all doing well too.

Al

Wow, congrats, glad you are undetected. I just started Nilotinib 400 mg morning and 400 mg evening, a month today, still going through all the side effects. I changed from Bosutinib, my last BCR result WAS 0 .25 , next BCR test is May 15 but it’s 3 month but only on this pill for 5 weeks. Would be interesting to see if any notable change. How do you feel otherwise being on the meds.

Hi Sue, thank you yes just above the detection line but very very happy with such a large drop.

Plateaus are very common 2.5 years to get to 0.1 for me. It took 1.5 years to go from about where you are now to below 0.1. Sometimes it’s just the way it is without any reasonable cause. Of course that for me and many was a worrisome time but once you learn than anything below 1% is very safe anything else is an absolute bonus.

I had many side effects on Tasigna in the early days and I am happy to report that I no longer have many or I’ve just adjusted to a new normal. It does take time to adjust and that’s even more true mentally.

I hope your next result makes you more comfortable with the situation.

Take care
Al

I am so glad you mention the mental bit. This treatment has gotten me real depress I think, since I take two pills in the morning and I get nauseous and headache all I can do is sleep. Yet I am exhausted in the afternoon. With previous pills it was only at night, so I was able to exercise and carry on in the daytime.
It’s going on 5 weeks, hopefully it gets better with time. Thanks for listening.

I couldn't agree with you more, on all your well-made points and observations. I took that long to get to where you are. Over the years I've wondered many times "why?" I feel it was stress (of various kinds, for a good decade), probably bumping up against some unremembered environmental assault and maybe a random virus thrown in, but the stress (chronic) was, I feel now, the biggie. Ah well, water under the dam, as my mother would say. (Or over the bridge . . .)

Thanks for sharing Alex and it's great news. Stress eats into our immune system and it's not something we deal with well, particularly in Western society. For those of us who are in a slower progression downward, if the side effects are manageable and quality of life is ok then I think we need to be as patient as we can be and allow the time needed.