I just received my pcr result. It is still undetected after 3 years in TFR. So my results alternate between “undetected” and “detected but not quantifiable”.
I am so happy. I will test every 6 months from now on.
You are here
My pcr result after 3 years without Sprycel is still undetected
It's interesting how we are all so different in terms of what dose is needed. I take 7,500 per day every day in winter to stay around 70. And you just need 5,000 per day for 3 days a week to keep from going over 100. May be differences in absorption, getting sun and other factors.
Goes to show why measuring ones vitamin D level is necessary in order to find out the correct dose to take.
I have just had my Vit D level result and it is equivalent to 90-100 ng/ml, which is just where I like to be. I need to take 8000-10000 iu daily to maintain that level. So as you say, it's obviously an individual thing and as I don't get much sun, unless on holiday (well at least not in these last 2 pandemic years of not travelling) I prefer to keep my intake quite high. I work in the retail sector and so I am exposed to all sorts of infections etc. handling money/cards and a small shop space with my customers, I feel pretty much protected with this high level (although my clinician will probably freak out 
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Sandy
Hi Karinne,congratulations on your fab results .Could you tell me how many years you have had CML and how many years you were undetected before you decided to try TFR.Did you go from 20 mg daily to nothing or did you do every other day first .Would really like to have a go myself soon.Hope you don't mind me asking questions .Regards Denise.
Hello Denise, I did not really choose to stop Sprycel. After 4 years at 100 mg and close to undetected (less than 0.002%) I was diagnosed with pleural effusion, a side effect of Sprycel. I had to stop the drug to let my lungs recovered. It took more than 3 months to get a clear x-ray and in the meantime my pcr did not move…. So, I didn’t go back on Sprycel and it is now 3 years ago. Hope it helps.
