That is some great info - especially on the interferon. Thanks very much.
At this point, I'm going to revisit this topic with my specialist. He trusts me to keep meticulous records on what/when/how much I take of scemblix. Therefore, he may be amenable to the idea of adding interferon.
Have you looked into Beta Glucan? I've read some intriguing things and wonder if it's worth the trouble as a peripheral supplement to help with TKIs.
A common theme, you've no doubt noticed, is I'm constantly on the search for things that can add marginal gains to our cause. Which is why I'm so meticulous on diet and exercise (did a 4.5 hour bike ride yesterday and will hit the gym today).
My monocytes remain suppressed. My specialist never mentioned them as a proxy. Very interesting yours looks at it.
My labs dating back to 2024 show the highest count at 287 (Jul 2024) with a low of 39 (Feb 2024). They typically average below 100.
My last 5 labs show an average of 86.
I'm inclined to agree re: low dose TKI increasing odds of additional mutations. Anecdotally, the CMLers I've spoken to who remain detectable yet, for one reason or another, opt out of transplant are typically on a standard dose.
The real-world exceptions are the people my specialist works with. He mentioned several CMLers who take a lower than standard dose. In his words, they are still around decades on this low-dose protocol.
Of course, every CMLer is different in terms of mutations. And it would be a severe mistake on my part of use their "success" as a certainty for me.
If he tells me it's time for a transplant, then I'll know every viable option has been exhausted.
I've braced myself for the reality that a transplant may be a reality for me.
However, based on my extensive research, current standard of care is embarrassing - even at the top transplant centers in the states. For example, the critically important variable of microbiome health and diversity is not taken seriously.
A (in my opinion) landmark study from New England Journal of Medicine showed just how important microbiome diversity is in reducing the probability of Grade 3-4 chronic GVHD. The study was published in 2022 if I recall. Yet, the top centers in the states largely seem to dismiss it.
There are some who are integrating microbiome health. For example, University of Michigan is running a trial in which they are giving patients potato starch.
The use of potato starch may sound insane to some. But those like me who really looked into microbiome, it makes sense. Potato starch (or cooked then cooled overnight potatoes) increase butyrate, which improve prognosis in reducing odds of chronic Grade 3-4 GVHD.
There is also a retrospective study which showed the time of day the patient is given donor cells can make a difference.
I've spoken with people who suffer from 3-4 chronic GVHD. It is a living hell for some - with their lives permanently altered. Many of these folks had no choice - as they were AML with dire mutations. Yet discussing at length with them, it is disgusting how their team did not include microbiome health prior to transplant. And this is a population in which the microbiome was severely compromised from the chemo+poor diet+lack of exercise going into transplant. Truly, any and all cancer patients must be their own advocate.
There are some very exciting transplant models - such as Orca T and Orca Q - which will eventually be approved. But the current methods I see being employed at the best centers in the states reduce the odds to little more than a roll of the dice.
Indescribably frustrating to see the disparity between the things that can be done to improve transplant outcomes and what is currently being practiced.
Thanks again and talk soon.
