25 replies to this topic

[garfonzo]

Xxgirl, everyone here is rooting for you. If you graph your pcr results it is nice downward trend. Also, my understanding is that PCR tests results vary much more at higher numbers so one result does not set the trend. Not everyone gets to MMR quickly especially those of us with high leukemic loads to start with. I took 3 years of plateaus, ups and downs, to get to MMR after starting with a WBC of over 550k. Some take much longer. Some don't quite reach it and live comfortably still. It takes a while for a tki to work through the stubborn cells. Sometimes the onc is too quick to switch tki. You are in a scenario of waiting for the bosatinib to punch through either by itself or adding ABL001 to it, or opting for the SCT.
ABL001 is having such good results, I would kick myself for not trying it if I could.

[Trey]

Before the era of TKI drugs someone with your response level, if stable, would be considered to be fantastic to the point where transplant would be out of the question.  Now in the era of TKI drugs the viewpoint has changed, but not for valid reasons.  Bosutinib is working fine for you so far and odds are it will continue to drive your PCR downward over time, even if slowly.  The biggest unknown is around the issue of keeping your anemia under control so you can stay on a therapeutic dosage.  So far that is also OK.  You are about at CCyR and stable.  That is good enough when compared to a transplant which is a crapshoot. 

 

CML is the hardest leukemia to cure by transplant.  That is because the CML stem cells are the hardest to kill of all leukemias since they start the highest in the stem cell hierarchy of any leukemia.  Relapse is not insignificant.  Survival rates are not as good as one would hope for.  Again, this is because the regimen necessary for CML is far tougher than for ALL, and usually tougher than for AML.  Transplant should not be ruled out, but it should definitely not be treated as if it were elective. 

 

If you are having trouble making a decision it is because you do not need to make a decision. The data so far indicates no decision is a good decision.  If it were me, I would let the decision make itself.

[xxgirl]

Garfonzo thanks for weighing in. I was hoping you would, considering you're one of the few members that I know of on here that had a WBC higher than mine at diagnosis...and are doing well on a lowered dosage.

My cumulative take away from this whole discussion is that while my doctor's would like for my results to be better (as would I) that right now they're acceptable. And while I wouldn't categorize this decision as "elective" (my Drs seem truly convinced that a transplant is necessary) I do somewhat question the criteria that they're basing their recommendation on.

[thatguy]

John- i don't remember where I read that about prognosis exactly, but I'm sure googling " cml age prognosis" or "cml age outcome" will bring them up. I've spent hrs scouring ncbi publications and others, so it may be buried in some boring/seemingly abstract places.

Xx- breakfast of Champs! Haha. I hear you though, and I feel retardedly superstitious in saying it out loud, but I want every variable out of the equation that I can remove. And I think you're exactly right, I think that the pcr results are taken as law. We all know though that they differ quite a bit by sample, lab, test, tester, how long it sits in what temperature, what's happening in us at samole time, etc. It seems many docs get one increase on a test and go right to a new drug, without double or triple checking it for trend. I get that they're probably terrified of liability, and that's a whole issue in itself, but think of the old saying for carpenters, "measure twice, cut once". It seems pretty wise to do the same regarding our health choices, if not seeking even further ocd-like certainty.

[xxgirl]

LPJohn, thank you so much for reaching out and sharing your experiences. 

 

It makes me feel like there are more of us "outliers" out there - those whose situations aren't as neatly aligned to the current expectations - as I had previously believed.  People that are doing well, that don't precisely fit the current expectations?  And with the support of their doctors?  Amazing!

[Melanie]

referring to one of your earlier questions about if your current results are "good enough" or "well enough"? That's the quandary, isn't it? Those who don't fit into the regular guidelines and expectations, push the boundaries of what is acceptable. Your doctors push you towards transplant because that is what the guidelines and their experience tells them to do, yet as Trey says, your results in the era of pre TKI's wouldn't make you a candidate.

When my doctors kept pushing transplant because they couldn't keep me on a TKI long enough to get any good results due to low counts, I just felt trapped. I had tried all The TKI's available at the time. I needed to talk to a Dr that was specialized enough in CML that his realm of experience included people like me and wasn't afraid to keep trying different, even unconventional treatments until all were exhausted. I was also racing the age clock for chance of successful transplant. I had two good matches. As I told you before, I decided to go see Dr Cortes. I'm sure your Drs at UCLA are very good, but sometimes just talking to a true specialist, with fresh eyes, can make all the difference.
It took years for Bosulif to work for me, to get through the low counts, the mutations, the plateaus, the spikes, etc, but I finally stabilized. No more transfusions or shots. Once stabilized, I knew I had reached my "good enough" and stopped worrying about the elusive benchmarks. To my surprise, they eventually came too. My local Drs are amazed and have also learned a few things from my experience.

What works for one may not for another, but it looks like you're stabilized enough to at least be able to seek another opinion and explore your other options. Yes, you may be searching for someone to tell you what you want to hear, but if it comes from an experienced specialist who has dealt with cases like yours and can offer you some hope, then why not? Your "good enough" may just get better!
Blessings!