Hi,
I want to share this wonderful news with all of you, this community which has been a huge help, practical and psychological.
My test results came back undetectable (considered an MR4 due to low expression of the abl reference gene), just on completing 11 months of treatment.
This is huge relief, and reason for celebration :)
Best to you all,
Koralia
Hey Koralia,
That's wonderful news, congratulations!
Did you achieve this simply using TKI's or did you pair it with other lifestyle changes (e.g. fasting) to get this result?
Hi,
@Alex, yes, indeed, I'm over the moon with the news. Especially today, I started my day with completely different mood.
Of course, as already mentioned, since there wasn't really high expression of reference ABL gene, I should not be disappointed if the next test comes up detectable again, but in any case, this is a very very good result, despite being MR4 instead of MR4.5.
@deonlee, I don't do the fasting, at least not yet. I'm quite fascinated by the mechanism behind the idea, which roughly translates - if I am not mistaken - that dormant cancerous stem cells can wake up, and get eliminated by the TKI. However, since it's just the first year on treatment, and the numbers were still up until recently, I couldn't be sure that I don't have a TKI-resistant mutation in low quantities in the mix. Therefore, based on the discussions in this forum, I understand that fasting could actually wake up any bcr/abl clone, including a possible TKI-resistant mutation as well, which could have been expressed in low quantities until now, and then possibly magnified due to fasting.
Of course, as numbers keep going down, reaching low residual disease, one can be more sure that there is no TKI-resistant mutation present, and then of course fasting would actually make sense.
Regarding other lifestyle changes, I would say that they are quite generic: I tried and lost some weight, because after the diagnosis I was stress-eating for a few months, so I had gained some. This also helped me stabilize blood sugar levels, since they are affected by nilotinib. I also take vitamin D supplements, and have slowly boosted my vit.D levels in the normal range (I was deficient before). Finally, I started regular exercise - at least until before corona, since now all gyms are closed down.
....and LESS STRESS. That's the main thing. Nothing is more important than our health, no job, not anything :)
BRs,
Koralia
Koralia,
"I understand that fasting could actually wake up any bcr/abl clone, including a possible TKI-resistant mutation as well, which could have been expressed in low quantities until now, and then possibly magnified due to fasting."
This is not a correct way to think of fasting as a mechanism to enhance resistant clones:
Fasting is likely to have the opposite effect. This is especially likely in the presence or absence of a TKI
I have had multiple rounds of fasting 3 days or more along with one day per week which I do every Monday (i.e. no socializing on Monday!). Only after starting my fasting routine did my PCR go from < 0.01% to "undetected" and has been that way since (3 years).
Is it the fasting? or the fact I added Selenium during that time or the Curcumin? or added vitamin D? Don't know. Maybe all of the above. But what I do feel is that my CML is gone which I will test soon (i.e. stop TKI).
I still exhibit mild myelosuppression (low RBC's) and will use fasting post TKI stoppage as a means to regenerate my normal blood stem cells. For the first time in 10 years post TKI, I may - "may" be able to restore my normal blood again and eliminate my anemia.
(one final note: CML is a translocation 'error' which "can" lead to disease (i.e. 9:22 bcr-abl translocation). Chromosome 9 and chromosome 22 are packed tightly around each other right at the bcr-abl cluster breakpoints. This translocation 'error' probably occurs all of the time in everyone as blood cells divide and DNA replicates. Defense against the products of this translocation 'error' probably evolved over time where our own immune system checks the result as aberrant and induces bad cell apoptosis. In other words, with or without a TKI, we are always making CML. A true eradication is not likely to ever occur or even be needed - just restored control via our immune system. TKI's are crowd control for when our immune system fails to check CML expansion through some run-away mechanism (i.e. induced by radiation?). T-cell activation in the presence of bcr-abl is what has to happen at a sufficient enough level in order for cure to occur and TKI no longer is needed. This is just my opinion based on what I have been learning about the biochemistry of blood disorders. It's fascinating).
Hi scuba,
I completely agree with the final paragraph/comment. Btw, it goes without saying that I value your opinion and I believe you have looked deep into all this info, and I silently follow your posts all around this forum 🙂 note that it's been only 11 months for me!
Still not convinced about what would happen with a resistant clone, and I would be interested to hear more, so let me explain and ask you back:
Even after reading the articles, although I fully agree with the positive effect that fasting can have especially when in myelosuppression, but also for cell regeneration, I still cannot see why wouldn't the dormant cancerous stem cells would be boosted, together with the healthy ones, if their numbers are still substantial.
As you say, the translocations exist even in healthy individuals, and it's just a matter of whether the immune system can fight them or not.
In the presense of TKI, cancerous stem cells can be dealt with by the tki, combined with the natural defense mechanism. What would happen if the cancerous stem cells are resistant to the tki, and at the same time substantially more than the natural defence mechanism can handle? Why would fasting help in this case?
Just a side-note: I myself don't have AT ALL myelosuppression, and I'm always at the high normal range (which actually stresses me out every time) , between 9000-10.000, with haematocrit >38. Furthermore, I hadn't reached <0.01 before getting this undetectable result, like you had.
Being on higher values, I only had 2-3 "points on the curve" to prove I'm going downwards, so I didn't even know if I would reach a plateau, or go up again, or whatever. Therefore, not knowing even whether this TKI can get me that low, and of course having my doubts on fasting when cml counts are still substantial, I opted not to try fasting that soon. Even just to see what this tki can do alone. It's that simple 🙂
Regards,
Koralia
