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Starting TFR after 5 years on Dasatinib/4.4 years DMR

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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! 

Good luck, What sprycel dose were you taking?

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.

Thank you! I was taking 100mg.

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. 

Update. My vitamin D levels are 60+ again. Bad news is my BCR/ABL is 0.86 after my last test on December 27. White blood cell count is still in normal range though. I know BCR/ABL can vary so going to see what my doctor says. If I have to go back on Sprycel, it was a nice 2-3 month break not being on it.

Ryn,

You will need to re-start Sprycel. But you should consider re-starting on a very low dose of 20 mg. There is an excellent chance the low dose will drop your PCR back below 0.01% quickly. And more likely give you a better chance at trying TFR again in the future.

Sprycel is a threshold drug in that once a sufficient level of drug is reached in the blood, action is maximum. More drug does not provide increased response. In fact, more drug can suppress the immune system in other ways. You want to achieve a bcr-abl of "undetected" and then start the clock for another TFR attempt after 3-4 years.  A lower dose sprycel will give your immune system a better chance to keep bcr-abl at bay once you again stop.

But right now, important for you to re-start so you can quickly regain complete remission.

Hi Ryn,

Vit D at 60+ .. is that measurement in ng/ml or nmoles/mL ?

You might find this Dr.John Campbell's interview below helpful -

Dr Michael Cohen discusses the importance of Vitamin D and zinc for the optimisation of the immune system. Vitamin K2 is also used to distribute calcium to the correct tissues. Thankyou Dr Cohen for this excellent explanation of preventing and minimising infection by enabling the amazing natural immune response.

https://youtu.be/w9h-XQm2qEY

Sandy

Ryn, as you have read, yes, younger people have a more difficult time reaching TFR, let alone being successful at it.  A poster in the LLS forum, your same age, after over eight years of undetected, relapsed almost immediately; no depth to her undetected status, which I have only seen in younger people.  She didn't test until her third month and by then was around 3.0.  She restarted on Sprycel 100mg, which she had been on for ten years and regained undetected in, I want to say nine months, but it could've been a little longer  She had been experimenting with reduced dosages but hadn't as yet committed to it; likely something she should have done after a year, or so, of undetected status.  CML levels can double week-to-week so don't wait before restarting your TKI.  Relapse is defined as losing MMR, 0.1.

Ng/ml. Thank you for the resource!

Thank you, Scuba! Definitely going to talk to my doctor about a lower dose.

Thank you for the advice! I think I'll regain undetected fairly quick. When I was first diagnosed I was at 50.5 and got down to less than .0032 in about 9 months after starting 100mg sprycel. I still have medication on hand so I can start taking it right away and then going to talk to my doctor about lowering the dose eventually.

Why younger people not successful in TFR?

Any reason?
Ya only mith??

Younger people immunity better than old people right?

What's reason??

After December to continue off drug (no dose) (000 dose)

Today 38 day...

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