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State of the body

If a person has been diagnosed with CML but subsequently achieves a sustained MMR, putting TKI damage aside will that person's body have been permanently damaged in any way by the leukaemia?

When a person with CML is in sustained MMR but suffers ongoing issues, are such issues explained solely by TKIs and unrelated medical issues? Would it be correct to say that the leukaemia now has no ill effect whatsoever on the body?

If prior to the leukaemia diagnosis my strength is level 100 but my strength today is only level 60, do I blame the leukaemia or the TKI for my substantial loss of strength?

Nimbus - Excellent questions. My onc always told me, "It's the TKI, not the CML" whenever I complained of anything, especially fatigue.  On that, he also said, "ALL my CML patients on ALL the TKI's have fatigue."  So. There's that, for whatever it's worth.  I have always wanted to know WHY and HOW the TKI's cause their problems, and not one doctor has ever told me.  BUT, Trey has, and after a lot of digging into science papers, I've figured some reasons out.  Across the board, no matter what's bothering you, it's likely due to the accidental targeting of healthy cellular systems at the same time our CML system is being targeted.  So, because of hitting PDGFR kinase, we get wonky interstitial cell fluid balances - boom, edema.  Especially periorbital, because - surprise! - also affected is collagen structure, and the already weakest places for support (like eyelids) let that edema in.  Melanin production is also accidentally swept up and hit, hence the super pale skin we get and the difficulty of getting tanned.  ATP is crucial to cell metabolism - using fuel for energy - so why would we be surprised that hitting CML's ATP in order to knock it out would also mess with our energy level overall, since healthy cells' ATP is getting hit, too.  There are lots more, but "they" never tell us.  I suspect that's because they don't have an ironclad causative linear proof - it's just suspicious and plausible.  Anyway, it makes me feel better to know that there's a reason, and I'm not crazy.  Now, your other question about long-term effects of leukemia - that one is truly a biggie.  Some people think the normal population has some Philadelphia chromosome/ABR-BCL and it's just below the radar of a PCR.  And what about equating "undetectable" with MR4.5 (0.0032% IS) - if even the teensiest bit is there, is there potential for trouble later?  Or is it as good as dead and your immune system will keep it that way forever?  Wow, dunno.    

Thank you, Kat, for your posting. It is indeed very interesting and very helpful.

My problem is "fatigue" which I would describe as being more physical than mental.

I started to lose my strength 10 months prior to diagnosis. My swimming performance dropped from 100 laps per hour to 75 laps per hour. This must be attributable to the leukaemia. This did not recover following my move to TKIs but instead I saw a further decline to about 70 laps per hour.

Otherwise, I have seen my haemoglobin count fall substantially. Anaemia. Most recently my iron is low but that is not always been the case. Consistent with your posting, my eyelids are drooping and my melanin is low (super pale skin).

It is uncanny that my symptoms are so similar to those listed in your report. But this is not a conversation that the haematologist will entertain.

I suppose that at the age of 65, I will see some decline in strength but the drop off has been steep.



I do not know whether melanin is a measurable thing. My optometrist did observe that my melanin is unusually low. I protect myself very carefully from the sun. I take vitamins D3 and vitamin K2. Again, this is surely a dasatinib related problem.