Where to start.
Well you’ve done the rounds before. But some things have changed. The tyrosine kinase inhibitors have improved somewhat. The side effects lessened, for some.
There are 2nd and 3rd line treatments and trials, though I am uncertain as to if it is all here yet, or all field tested.
There have been advances in treatment, several, since your first diagnosis. It may be worth considering seeing what tollerance your body will have to these. Some show no side effects at all. I understand your hesitation, and I am not advising one way or the other.
How long have you been off dose; and what med; and what dose level were you started on: I suppose these would be my first questions? You don’t have to answer, obviously.
I can just verbosely type things at you, that is my true gift after all :P. I am good at that.
Your youth is uncommon for CML, and that sucks because it always means there is less research for that age bracket.
Sometimes it means it is more aggressive, of course, & you did have an acute phase onset, arguably. I’m sure the medivac chopper pilot would agree.
But nearly always youth also means your body can take more, often without side effects (especially with some of the newer ones). You were able to take control back to chronic, which is awesome. I know it was not…that will do, it was not.
But that isn’t the case now, neccessarily.
Treatment, of these kinds, or not is always a tough call. I don’t know what I would do. I’m yet to see data that particularly blow me away, with any cancer, one way or the other, once we are at this point.
Certainly not conclucively. Certainly not round 3. If I am being honest. But if any are close, it is CML.
I understand stopping. I’d understand not telling anyone. Completely.
At about the time you were diagnosed did you know only approx 60% of people stayed on meds? Interesting hey. Considering the claims.
The data still find no correlation between side effects and non-compliance.
Yeah right. Science.
That has to say something. I take 11 pills a day somedays, between multi-itamins, antihistamines and painkillers; and I’m “healthy”! If a third of a population are not taking a medication, there is probably a reason.
But again, that perhaps isn’t the case now.
Australia will, at times, get newer meds a little slower, especially if they were not designed here.
Also, as you indicated, the number 1 reason was individual differences and psychological reasons [that were personal] that predicted a patient going off meds. You are not the same person you were then though [none of us are, you know. A month can be a lifetime, 6 months can be an eternity. A whole new body and a whole new cancer, to get only mildly esoteric. Another reason to perhaps consider re-examining the options. Though I support either choice, of course].
J of Haemotology  called the ability to target a specific gene [the BCR-ABL1 fusion gene] a “miracle”; and among the first of its kind to be nearly completely effective, with the standard medical proviso “in some cases”. Though it is “still too early to say whether in the future it will be possible to consider … [a] ‘cure’ for CML”, in this way; none the less some incredible results.
Clinical Practice  reported in a large meta review “responses in the majority of patients … [with]relatively few side effects” and “CML patients in complete … remission 2 years after starting…can have a normal life expectancy”.
This is 2012, so worth thinking about, maybe. Depends on a lot of your hx I don’t have, of course.
But bear in mind you may be surprised by yourself, by your own resolve; in a Franklian sort of sense. With how you cope I mean. Potentially even with adverse events.
Statistics, of course, vary; but if I had to guess; you’re probably in a good place.
In raw figures the best statistically significant difference was 77% non-event rate on treatment v 60% off [<.01 – which means all things being equal on aggregate that difference is purely due to treatment].
That is a reasonable result, though of course does not eclipse quality of life issues, if they are still to remain in your case. But it is a great result if they don’t.
The 2013 research shows those diagnosed pre 2001 had a 20% survival rate; where as those diagnosed up to 2008 saw a jump to 80% survival. And it has been improving ever since. Getting CML post 2009, without being too morbid, is a “good time” to get CML, if one is to get CML at all.
Leukemia Research  in a review [multiple studies] that examined quality of life ratings [QLR] in cases across a few thousand patients brought SOME insight, as far as preparation goes. This is the kind of data I am frustrated is all too often missing in any meaningful sense, so was a welcome find.
It was found that the QLR tended to be higher in patients off treatment. Which is important to note, to be sure. My only criticism would be that the papers all focused on control groups sampled from the general population ie they essentially say: “when given the choice, people tend to prefer not to have cancer”. Not much of a result In my opinion.
However, also from the 2013 data we have recommendations to approach therapy with this in mind, and offset it with behavioural and psychological measures (and psychopharm, where possible) before treatment rather than playing “wait and see”. I think this is a good approach. Physicians often like to keep all interventions to a minimum; less can go wrong with less moving parts essentially, and it is easier to tell what is doing what, and with better guesses as to where and why ect [nb oh yes, that’s right; I said guesses. That is not a misprint. Educated, but guesses].
I personally only care about reducing or removing all patient suffering; if there is some additional risk to do that, I would still be inclined to lean that way. But I’m not an oncologist.
And, I suppose, speaking of which, don’t take any of this as advice per se; rather just information to throw in the mix. To put to your doctors. Read more on.
As I said, I am not even quite sure of what I would do [one is never really sure on these topics]. But that is how I approach research, I try to become the patient and see what I would do, as best as I can. At some point you find cause to make a call. Otherwise you just have to make one. As do doctors.
People who haven’t been sick do not understand medicine is like that, we’re still culturally taught it is a kind of magic. Yet [as you know] it is far from it.
More like an equal mix of home ecc + wood work: gloves and soap, a pinch of whatever we keep in this cupboard, saw some off that, heat you up a bit, cut this off that, screw this on there: & we’ll see how we go.
All we can do, as information changes and the universe places something novel beside us, is re-evaluate as best we can in that moment. And forgive ourselves, and the medical staff, who are in that moment with us.
I am certainly not saying any of this is easy. I am just trying to begin and show commitment to sharing, and a lot of “who I am” is kind of regimented, like this. So this is sharing to me.
Which does make it hard for me to connect with people [and is also why I try to balance it out with the Chronicle et al submissions & performance in social exchanges].
But anyway, the “hyper-overdrive” analysis circuits do make me a somewhat reasonable, & hopefully creative, [if mildly cynical] researcher. So like most of life: it is a trade off.
Finally, there are also well documented cases of spontaneous remission without treatment, also cases where markers show a patient to be “ill”; but they are not.
This is the same in all cancers, well documented, and I always like to spend some time with these data, because oncology clinicians do not.
Rightly so, because you can’t prescribe “spontaneous remission” and you don’t want scared patients opting for a miracle every time, obviously; because they are rare.
But they are also very real, in the scientific sense.
These are the same journals.
And I think that this information can play a part in countering hopelessness and improving overall self efficacy [especially in cases of 2nd or 3rd re-occurance].
These personality changes, in turn, have been shown to form part of the base-force that can help the body in working as a holistic unit to arrest disease once again. To assist in swifter recovery, working WITH medications as an extension of self.
And unquestionably, they assist in quality of life. Which is too often the 2nd or 3rd thought in the clinic.
And hey, I understand: they figure there is no “quality of life” without there first being a “life”. But who wants to live a life of dismal quality? It’s a tight call. And ultimately I trust your judgement, as we all must.
If I post any parts of this this on any of my pages, I will make sure it is de-identified completely, so as to be a more of a general piece on CML in 2013.
And on emotion, I suppose. I don’t really submit emotional things, but for angst. This is much cheerier than usual :P.
I tell you that here so that if you saw this letter [or similar] posted on some web page, you will have been told first and will not feel jilted or wronged in any way. The letter is to you, but the information may assist others in their searches for…whatever it is we all go looking for to assist in the decisions that must be made.
Several of my close friends have been diagnosed with various cancers recently you know, & I would like to keep a stream of somewhat relevant data present, just in case they look, so they know some one is thinking about these issues. Even if they or their family can not at this time.
And for me I suppose, as I said; it is all heavy stuff, and this is one of the ways I “communicate”. Even if it is often one way.
And this writing is so dry. It is all for me really, isn’t it? Who could read it? Like most of the things I write; it is all but a single reference short of a dissertation.
So that is all I have for you for now. I hope to be in touch, hard to say when, though I am always contactable on here if you need anything. I’m pretty off grid, I know.
But I’ll endeavour to keep the delays short, and I look forward to getting into the heavy philosophy of it all with you very much.
Alright-y, [hopefully it wasn’t too dull or just a pile of things you already knew].
A gesture at the very least.
With Only the Warmest Regards,
J.J.R.  Chronic Myeloid Leukemia in 2013 – Letter to a Friend, Chronicle in Letters, p44 (4), [Aug07]. Ed1.