Mounting evidence dasatinib discontinuation is safe

Questions to ask about the study:

1. What was their definition of "deep molecular response" EXACTLY? (In numbers)

2. What was their definition of "sustained" deep molecular response?  How long was "sustained"?

3. What was their definition of "remission" EXACTLY?  (In numbers)

Success rate of about 50% - what is new about this study?

Just continuing added evidence that patients who reach deep molecular remission ("undetected" for 3 years) have a greater than 50% chance of treatment free remission.

50-50 are good odds to try when one reaches this milestone.

As important - the "risk" in trying is safe. So if it doesn't work out, you back on drug and resume where you left off.

Hi Kat - I can appreciate your frustration .... You apparently have very active CML stem cells that hide away and wait for a shot to get back in business once treatment stops. The daughter cells are very susceptible to your TKI, but your CML stem cells not so much. I have a working theory ...

As long as CML stem cells do not divide, they are "hidden" from a TKI and capable of re-starting disease. Two things have to happen to get rid of them. One - they need to be dividing when a TKI is around so their number gets greatly reduced. Second, the immune system needs to be primed to attack CML when CML is in its infancy so it never gets started again.

My approach to one above has been to fast (3 days minimum several times a year) in order to coax stem cell division and expose them to TKI attack. It is my attempt at upping the odds of reducing the CML stem cell population. My approach to number two above has  been to increase my vitamin D status to high normal (70 ng/ml) as well as take selenium (200 mcg per day) in the hope my immune system is strengthened to attack CML. I also take Curcumin which is a known down regulator of the NfKb pathway necessary for cancer progression and interferes with cancer cells preventing their own apoptosis.

I suspect people in the successful 50% had a natural set of circumstances that enabled them to cross over into not needing their TKI anymore (at least for now). Not knowing the reason, I call them lucky. Their stem cells may have just been out in the open at the right time when they started therapy! Lucky them.

I have no idea if my approach above works, but on paper it seems reasonable and its good for my overall health in any event - so worth trying. When I do try cessation again (this year) and cessation were to take hold, I would not be able to say it was because of my approach. But maybe. Only a scientifically designed clinical trial would be more definitive.

I strongly believe a true cure lies in targeted therapy which greatly increases our immune response to CML naturally (T-cell chimera's). It will come. Hopefully sooner rather than later.

I'm rooting for you Kat - you'll get there. One way or another.

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I have a working theory based on what we already know about CML stem cells.

1. Leukemia stem cells (as well as other normal stem cells) can remain quiescent for a very long time in a non-dividing state (years). The 50% of people who succeed in treatment free remission, just may have been lucky that they nailed many of their LSC's while in a dividing state. The other 50% were not so lucky.

TKI's only kill actively dividing CML cells including dividing stem cells (because it attaches to the ATP energy site) meaning that non-dividing stem cells live to divide another day when TKI is not present and re-start the disease.

2. Suppressed immune system is not available to attack re-emerging CML - so disease restart occurs.

In light of 1, and 2 above, an approach I have taken in order to "up" my odds of treatment free success is to:

a. Coax CML stem cells into dividing - thereby exposing more of them to my TKI while I am still taking it.

b. Improve my immune system function using nutrition to as high a level as possible.

I am now fasting regularly as a method to coax blood cell regeneration which induces stem cells to divide. I have no idea how many times I have to do this in order for it to work, but decided that 4 times a year (3 days no eating) is a good start. Data from Dr. Longo's research suggest a few times per year. I interpret that as four. Blood letting (i.e. pints of blood) is another way to 'induce' stem cell division, but I need my blood (i.e. anemia).

I increased my vitamin D status significantly in order to maintain blood levels around 70 ng/ml. In fact, I strongly believe that if I had maintained a high normal vitamin D level in the first place, I might have avoided CML altogether. Data shows high normal D levels (70 ng/ml) may strengthen our immune system in terms of cancer prevention. Not a cure, just an added boost. Help tip the odds in my favor. (and I have not been sick with cold or flu once since doing this).

I take Curcumin which data shows has a strong down regulating effect on critical cancer cell pathways (NFkB) causing spontaneous apoptosis. Another quiver in the arsenal attacking CML.

If after I try treatment free remission and it fails (I lose PCR undetected status), I will just assume, my genetics puts me in the unlucky camp.

Here are my Bcr/Abl1 and WBC  numbers from May 2019  to Jan.30th 2020

MAY15th-2019 :  Bcr/Abl1:  NOT DETECTED and WBC: 7,400.

July 19th-2019:   Bcr/Abl1:  1.1457% and WBC: 7,900.  ( Went up 500 after being off of Meds for over 35 days)

Aug 30th- 2019:  Bcr/Abl1:  .3861% and WBC: 6,600. Back on meds but at lower dosage of 20 MG daily from 50 Mg of Sprycel.

Nov 1st- 2019 :   Bcr/Abl1:  .1314% and WBC: 7,200.

Jan30th- 2020 :  Bcr/Abl1:  NOT DETECTED and WBC: 7,600.

 Hope this helps you.

Chuck.