16 replies to this topic

[CMLParent]

Are there any recent studies done that correlate progress and prognosis? With the newer generations of TKIs I am curious if slower progress is still having an impact on overall survival. Thank you in advance

[chriskuo]

What do you mean by slow progress?  The things are achieving CCyR in a reasonable length of time and then moving toward MMR.

If you don't achieve MMR in year 2, there are now a number of possible drugs to switch to.  Some of us have even switched to bosutinib and have found greater efficacy and lesser side effects.

[Trey]

With 4 mainline TKI drugs, progress on one drug does not mean much since progress is usually possible on another drug.  This has greatly improved the overall prognosis for all CML patients, so lack of progress cannot be defined by how quickly or well a patient responds to a single drug.  But generally speaking, as long as TKI drug progress continues (defined by improved FISH and/or PCRs) there is no particular lower survival prognosis once the patient has 1) achieved and maintained CCyR and also 2) passed the 2 year point.  Up until the 2 year point residual latent mutations could still pop up.  After 2 years the prognosis is very good for all who are responding to a TKI drug.  Although exceptions occur, the overall odds of success are about 95%.

[JohnFromChicago]

With 4 mainline TKI drugs, progress on one drug does not mean much since progress is usually possible on another drug.  This has greatly improved the overall prognosis for all CML patients, so lack of progress cannot be defined by how quickly or well a patient responds to a single drug.  But generally speaking, as long as TKI drug progress continues (defined by improved FISH and/or PCRs) there is no particular lower survival prognosis once the patient has 1) achieved and maintained CCyR and also 2) passed the 2 year point.  Up until the 2 year point residual latent mutations could still pop up.  After 2 years the prognosis is very good for all who are responding to a TKI drug.  Although exceptions occur, the overall odds of success are about 95%.

 

Trey I am curious is that...

 

2 years after CML begins its course?

(given the average DX of 100k WBC and 90% PCR how many months before could we estimate that it started?)

 

or

 

2 years of maintaining CCYR?

[beno]

My onc told me that they would consider changing me from Sprycel if I didn't reach MMR by my next appt, which will be just under 1 year since I began treatment.  That seemed a little bit quick to change compared to others.  I was just curious if that was typical or not?

[kat73]

In the era of 7 years ago, my onc continued to write in my office notes things along the lines of "continues to respond well, approaching MMR but not quite there yet."  He never mentioned any change in plan at all.  It took me about two years.  I believe then the NCCN guidelines had you achieving MMR at 18 months, but I'm not sure.  I know it wasn't 12 months.  But I guess after Sprycel and the other 2nd generation drugs began to come out and then be more widely used, and since they're speedier, the natural human reaction (and doctors are humans) was to push for an earlier gate.  I think it's human nature that also explains why PCRU seems to be the Holy Grail now, even though that has not been proven to be "better" than CCyR for longterm survival.  What they do know is the 2nd gen drugs get more people to the various checkpoints sooner, and those people in turn seem to be achieving PCRU in possibly greater numbers (not sure) or sooner than they would have.  Anyone:  correct me if I'm wrong.  The big "So What?" question is still with us, because no one has lived with CML for 30 years yet to see which way comes out best.  My personal hunch is that we're going to be seeing more research done in the area of dose reduction or on/off therapy, and the possibility that it's enough to stay under MMR.  In other words, more emphasis on QOL while we await a cure!

[JohnFromChicago]

My onc told me that they would consider changing me from Sprycel if I didn't reach MMR by my next appt, which will be just under 1 year since I began treatment.  That seemed a little bit quick to change compared to others.  I was just curious if that was typical or not?

 

That would be pretty atypical to switch so soon from what I have seen. Unless you are still having issues with low platelets or other side effects, in that case it might be worth switching. I see you were diagnosed 5 months after me but we currently both have similar PCR values around .15. Something interesting I have noticed from this forum is that I see most of the younger than typical CML patients ( <45 ) seem to have a slower response. Seems the younger the patient the slower the response. I was diagnosed at 28 and I have a slower than average response but I am not concerned about it. I once found an article that mentioned younger patients being less likely to hit milestones but overall survival rate was the same as older patients. I wish I could find it again. I would also be really curious to see results if we did a forum survey on it.

[gerry]

It could be that younger people use other forums FB etc for information, so we may not be seeing the full story. We've had a young member on here who was diagnosed around 12 years of age and has been TFR for a couple of years now.

Kat - another reason for concentration on dosage reduction is the on going costs for the TKI, particularly in countries where it is subsidised.

[beno]

That would be pretty atypical to switch so soon from what I have seen. Unless you are still having issues with low platelets or other side effects, in that case it might be worth switching. I see you were diagnosed 5 months after me but we currently both have similar PCR values around .15. Something interesting I have noticed from this forum is that I see most of the younger than typical CML patients ( <45 ) seem to have a slower response. Seems the younger the patient the slower the response. I am 29 and I have a slower than average response but I am not concerned about it. I once found an article that mentioned younger patients being less likely to hit milestones but overall survival rate was the same as older patients. I wish I could find it again. I would also be really curious to see results if we did a forum survey on it.

 

I turned 42 the month I was diagnosed so I'm also younger. I still have mild anemia and platelet counts around 140, which doesn't concern my onc.

[AdamJ]

That would be pretty atypical to switch so soon from what I have seen. Unless you are still having issues with low platelets or other side effects, in that case it might be worth switching. I see you were diagnosed 5 months after me but we currently both have similar PCR values around .15. Something interesting I have noticed from this forum is that I see most of the younger than typical CML patients ( <45 ) seem to have a slower response. Seems the younger the patient the slower the response. I am 29 and I have a slower than average response but I am not concerned about it. I once found an article that mentioned younger patients being less likely to hit milestones but overall survival rate was the same as older patients. I wish I could find it again. I would also be really curious to see results if we did a forum survey on it.

 

I am also on the younger side. My diagnosis was at 40, but my response was very quick. I have assumed that my CML was caught early and that might be related, but it is really only a guess.

[gerry]

I was 46 when diagnosed, don't really think the two years would have made any difference to progress. I was diagnosed very early - flying under the radar according to the doc.
The only thing that might have an impact and I'm only guessing here - if there is evidence of slower progress at a younger age, could it be that the drug is metabolised more quickly.

[Trey]

The 2 years post-diagnosis (start of treatment) is the time necessary to flush out any latent kinase mutations which might pop up and stop that particular tki drug from working.  Once past the 2 year point kinase mutations become rare.  So if someone makes it past about 2 - 2 1/2 years without losing response, the probability of continued long term response is very high regardless of the total response level achieved. 

[Sandrea]

I was 42 when diagnosed, 86000 WBC and PCR at 18 months only 0.49%

 

[Trey]

I was 42 when diagnosed, 86000 WBC and PCR at 18 months only 0.49%

 

Which generic do you have available in Russia?

 

Have you had low blood counts interfere with taking the drug?

Edited by Trey, 04 February 2017 - 10:57 AM.

[Sandrea]

Generic which I took 18 months is Philachromin http://f-sintez.ru/preparaty/philachromin/

My blood counts are always higher than the average (WBC from 6 to 9)  and I never missed taking the drug.

[thatguy]

Call it superstition, but I found my pcr's higher than expected thus far, following the diligent months in the gym and good diet. The fatty food and slothful months (knock on wood for this result) seem to fall quicker.

[Krock41976]

I am 40 and was diagnosed in June of 2015 and started on Gleevec. Got down to CCYR but then started trending up and down a couple times so they switched me to Tasigna in July 2016. After three months, I was at .321 and as of yesterday I'm at .21, so it's been slow going for me.