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Starting TFR after 5 years on Dasatinib/4.4 years DMR


First time posting. I want to document my time starting TFR and thought it would be helpful to keep it here. At my doctor appointment today, we decided to try TFR after looking at the DASFREE study. I'm fairly young (33 in March) and I've read in studies younger people can relapse faster but that could be due how many people under 45 actually participate. The date feels right, I started taking Sprycel/Dasatinib almost 5 years ago to the day (10/15/2016). I've tested negative for BCR/ABL since May 2017 (<0.001% and <0.0032% since May 2018), 

If all else fails, I will start Sprycel again but I'm staying positive. I've read great advice on here as well so thank you to those who post frequently. I've been taking Vitamin D (2,000 IU per my primary care doc) consistently. I'm also buying Brazil Nuts to boost my selenium intake. 

Taking my next PCR test in a month! 

Consider getting a vitamin D blood test so you know your actual level.

2,000 IU's is likely not enough to push you over the 55 ng/ml mark.

Sweet spot for maximum impact on cancer is around 70 ng/ml.

I take 7500 IU's per day (fall/winter) and it keeps me at that level.

You are in a good place and the next six months will be key if loss of remission is to occur.

Good to know! I did recently get it tested and I was at 16. I'll start upping it. I get my vitamin D tested again in December. Thank you for the advice!

How recently was the "16" ng/ml value reported to you. If it was within a few weeks, I would suggest you consider taking 10,000 IU's per day for 3 weeks and then test again. You might get your vitamin D level above 40-50 at that dose. Likely you will need to stay at 10,000 IU's per day for more than 3 weeks. And after you get your D level up to above 50, taper back to 5,000 one day and 10,000 the next through winter.

Also - consider taking vitamin K2 (200 mcg) with vitamin D3 as the two vitamins work synergistically. Vitamin K2 helps move calcium from the blood and soft tissues to bone. As  your vitamin D level rises, you will be absorbing more calcium from food. As that happens, vitamin K2 makes sure any excess goes to the bone for storage (and strength). With K2 in your system, likely impossible to overdose on vitamin D at the 10,000 IU's per day amount. Avoid taking more than 10,000 IU's vitamin D3 on any given day.

(My vitamin D level at CML diagnosis was 17 ng/ml. I am convinced that if I had known about D and it's importance and kept my D level at 70 ng/ml, I would have avoided CML altogether. Low D facilitated the bcr-abl mutation getting a foot hold and expanding. High D likely would have prevented CML from ever expanding. Just my theory, but I believe this is the case)

I got the last Vitamin D test done on September 24. Thanks for the tips! Super helpful, especially about the Vitamin K. I too am convinced that if I had known more about the importance of Vit D I might not have gotten CML. My levels have always been low ever since I was a teen.