And so it begins - TFR

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

Koralia

Good luck scuba, you are a winner!

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):

• https://www.sciencedirect.com/science/article/pii/S0065230X17300246

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!

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

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.

I wish you the very best of luck Scuba and look forward to your updates, your posts have always been very helpful to me and i am sure everyone else. GOOD LUCK 

Good luck, Scuba!

I also had my first TKI-free day for 3 years last Thursday. Have been reducing from 4 to 3 to 2 to 1 Tasigna/Nilotinib pill a day dince February with monthly testing and stayed at 0.000.

Will test again in a few weeks to see if it creeps up.

As all you folk on Tasigna know, the 'fasting' thing for 2hrs before and 1hr after, twice a day, is a little tedious. Boy did i take advantage...had a long lunch for the first time in years and ate some pomegranate this weekend and had a random piece of chocolate in what would have been my pill 'window' before.

I am very aware this may well come back so I am enjoying the next month while I can and then see what the doc says. Is a strangely liberating and alien feeling and my eyes misted up when i turned off my dreaded 2x daily alarms on my phone.  Fingers crossed.
 

Yep, Scuba diving in Cozumel tomorrow....I mean getting to Cozumel, then diving Friday.

AND

Wait for it ....

NO packing Sprycel this trip !)@(*!@)$(*@#_$(

or worrying did I forget it. It's forgotten!

Scuba, I am so happy for you.  Couldn't happen to a nicer and more helpful individual.  Have fun diving.  Please keep us posted.  Regards  Ray

Thanks all!

Back from Cozumel. Fantastic diving. First trip without making sure to pack my sprycel. I stared at it on my night stand for a good 10 seconds while packing and smiled knowing it wasn't coming with me on this trip.

Lots of sun, no sun screen and I am tanned up (no burning because of prior high vitamin D). During my dive days I did not take any vitamin D3 supplement. The sun was my source. And as my D level is already high, no need to over do it. Important to keep your D level between 50 - 100 ng/ml. The intense sun I was in was more than enough to keep my levels from falling without a supplement.

I didn't notice any change in my skin tan without sprycel in my system like I was expecting. Sprycel may enhance melanin production. I suspect as I was taking a very low dose and by the time the sun is up high, my dose of sprycel would have been long metabolized. Still, I was expecting a deeper tan to develop. Maybe I just need to stay longer in Cozumel!

The economy in Cozumel was sad to see. Covid has decimated business' which depend on tourism from cruise ships and of course diving. It reminded me of Cozumel from 30 years ago - more of a sleepy town then. Now, just closed shops everywhere.

Covid paperwork is required and we sign away, but at least most is now done with an App. It was nice to see so many people returning to living again. The plane was mostly full, but half as many flights as before. We had to take a Covid test within a few days of returning home. We tested negative as expected. But - if we had tested positive, the resort would put us up for the 14 day quarantine protocol for $5 per day. Hmmm....

Looking forward to our next trip! (and without sprycel)

No fast here ... lots of Tequila (something about Mexico and Tequila - it is outstanding), fresh seafood every day and Papaya. Oh...and chips and salsa.

Did I mention Tequila?

Good luck Scuba!  Do you remember the studies that showed 50mg Sprycel was doing better than the 100mg?  If so, can you reference it here with a link?

Good luck to you!  I’m sure you’ll get there :) if anyone can... it’ll be you. 

Best of luck, Scuba...look forward to hearing your (successful) journey!