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And so it begins - TFR

Starting today, I will no longer be taking my 20 mg every other day dasatinib. My last PCR came in today 'undetected' as it has been for four years.

My doctor agreed - and even suggested - that I stop medication and test for durable remission.

AND - this is the best part, he agreed to let me monitor every 3 months instead of every month which is the normal protocol. It will take 3 months if anything shows up to show up. We'll stay on a 3 month protocol for six months and if continued negative, I will revert to a six month protocol just like I am now - except without dasatinib. If I do become positive, I will go back on my 20 mg per day protocol and that will be that. Will likely stay on dasatinib for the rest of my life - although will keep trying cessation. Each month is a blessing to be off drug.

He did say I am probably 'cured' because of my history ().

I will share how this next phase of my CML journey turns out with everyone here. It is nice to be TKI-free - hopefully without withdrawal symptoms.

Good luck scuba!! I wish you all the best!

Koralia

All the best... your posts on vitamin d and curcumin have been very helpful.Enjoy the TKI free days

I wish you the very best of luck Scuba and look forward to your updates, your posts have always been very informative and helpful to me on my cml journey so far.

Best wishes 

Diane

I am very curious if I can achieve permanent "remission" and if my nutrition approach can nudge my genetics to defend against any new CML naturally.

I am increasing my Curcumin dose from 2 grams back up to 4 grams for the next 3 months. Curcumin down-regulates genetic pathways important to CML. This is (probably) the reason, when I had to stop treatment due to severe myelo-suppression, CML came back very slowly (took 9 months). With CML essentially gone at this point, keeping any new CML down-regulated from the start should give my immune system an advantage.

Also - my vitamin D level is around 70 ng/ml today vs near 16 ng/ml when CML was raging and I was borderline blast crisis! High normal vitamin D signals blast cells to differentiate (in fact, vitamin D is required for blast cells to differentiate). This is why I have no fear of CML going into blast crisis during my TFR attempt. Worst case, CML just starts to expand again, but will be caught 3 months or 6 months from now. My blast cell count is zero and has been for years and years.  I probably will continue TFR even if detected again to see if I can keep PCR < 0.01%, but will still be a disappointment.

I take selenium now (200 mcg) when I didn't at last attempt. We know selenium has impact modulating cancer stem cells (down-regulate):

It is my hypothesis over the last 4 years when I was "undetected" and taking selenium, CML stem cells were being eliminated. CML stem cells are required to restart CML disease in the absence of a TKI. This is based on research and not clinical studies. Clinical studies are required for definitive statistical proof selenium destroys cancer stem cells. This has not been done (no money in it for big pharma). But at least the science is clear this is possible. And It's healthy to do so for other reasons, so I take 200mcg selenium per day and eat Brazil nuts (not at the same time).

Also since last TFR attempt, I now do 3-day fasts multiple times per year which upon re-feeding forces blood stem cells to divide and proliferate. I tested the idea during fasting, that CML stem cells are vulnerable to TKI attack (TKI's kill CML stem cells during division) because fasting forces CML stem cells to come out of quiescence. Over 4 years, it is my hope my CML stem cells were systematically attacked over and over through down regulation, ATP binding apoptosis during division and high vitamin D. My CML stem cell population probably kept shrinking and shrinking - and hopefully is now below a critical threshold necessary for disease expansion.

Finally - I believe CML stem cells are in everyone. The juxtaposition of chromosome 9 with chromosome 22 in the nucleus practically guarantees translocation occurring (forming bcr-abl oncogene) given how tightly bound the two breakpoints are to each other. So my theory on TFR success does not rest on eradication of CML stem cells; but rather on population control of any new stem cells which form. Our immune system naturally defends against these cells. I am going to find out if my immune system has re-developed the ability to keep CML in check without a TKI. My odds are 50-50 - maybe a bit better because of the steps I have taken and described above. My doctor thinks so as well. He is intrigued as he followed my journey on what I did to lead CML to crash and now - 'undetected' over 4 years.

A TKI free life - will be nice.

Thank you everyone for your encouragement and support!

 

Good luck mate! If anyone can do it it’ll be you.

All the best of luck Scuba!
Keep us posted!

Vicky

How many patients successfully tfr (long time (how long?))??

Any information available??

Only 2-3 year information available in Google....

Any case available fully cure (long term tfr ya cure)??

Only information purpose....

Best of luck again........

That is great and heartening news Scuba. All the very best wishes for the attempt. I am sure everyone is routing for you.

Best wishes

David

That 's great Scuba! I wish you the best!!

We're all pulling for you Scuba.  I bet you are successful.  

I am a bit surprised that your doc is allowing you to test every 3 months at the beginning.  During my unsuccessful TFR attempt last summer, I went from undetected to .02% in just 70 days.  If I had waited 90 days to the first test, it might have very well turned out the same way, but even if I had wanted to test every 3 months, my doc never would have agreed with that.

Regardless, good luck and keep us posted.

CML is a slow disease when in chronic phase (blast cells are zero or very low). If CML does re-start, I probably won't know it until six or nine months from now as has happened last time I tried TFR. At that time I tested once per month for nine months and CML smoldered - moving up and down but always below 0.1%. This time, after 4 years "undetected", I am expecting it will take quite a bit of time for CML to expand if it is going to expand. Recall most people who are diagnosed with CML (i.e. they feel sick when they present to a doctor), most likely had the disease building for years and still in chronic phase. Research points to this fact that chronic phase CML is slow. My doctor agrees with me and has the freedom to go off protocol (CML researcher) which is why I am on a 3 month testing program instead of one month.