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Imatinib still best option?

Hi All,

Hoping you might be able to give me some advice.  I was diagnosed with CML at the age of 32, in October 2015 and started a daily dose of gleevec 400mg. My hematologist wanted me to start with gleevec because of my age, the need to be on TKI’s for a long time, and the fact that it has been around the longest and hoping the side effects would be manageable for me. Also, knowing if in the future I develop resistance than I would have lots of other TKI options.

I reached MMR by 18months past diagnosis, though I was at .2 at 12 months so it was close to a year I’m sure.  Since then, over the last 30 months or so I have fluctuated anywhere from .02 to .08 up and down but always within MMR.  At my latest appointment it went from .08 back to .07.

My hematologist likes how stable I am and that I’m continuing to be in MMR and has no desire to switch meds at all and doesn’t seem at all concerned that my numbers don’t seem to want to drop to a better log reduction.  

This is completely fine with me considering my side effects are indeed great lately and my body has gotten used to the gleevec, but I’m wondering whether I should be more aggressive to get my numbers lower with a stronger medication. Anyone know if a deeper response will affect my long term prognosis or if you tend to agree with my hematologist?

 

 

I think you are doing great and your hematologist is giving you good advice.  As long as you are able to maintain MMR or better and have little or no side effects, I would stay the course.  Long term survival is similar for all three front-line TKI's. You could possibly get the same or deeper response with lower than starting doses of Tasigna or Sprycel, but these are more powerful TKI's and their long term safety profiles are not as good as Gleevec from what I have read. I am on 150 mg Tasigna which is 25% of original dose. It beat me up very badly for the first 9 months and I still have some unpleasant side effects even at this low dose.  If I knew at diagnosis what I know now, I would have opted to start on Gleevec. Tasigna carries a higher risk for serious cardiovasular events like PAOD, liver damage, hyperlipidemia and hyperglycemia.  Others on this forum are on low dose Sprycel (20, 40 or 50 mg/day), but this medicine carries the risk of pleural effusions and cardiovascular events (though not to the same extent as Tasigna).  You might find the attached useful:

https://www.tandfonline.com/doi/pdf/10.1080/10428194.2017.1379074

If you want to try cessation some day, you will have to get to MR 4.5 (.0032) or better consistently for a year.  Gleevec has not gotten you quite there yet, but Tasigna or Sprycel might at some dose level that would have to be determined for you through titration. I have been at MR 4.5 or better for 13 months now so I am staying the course with Tasigna in hopes of trying cessation in early 2019. Other than this, I say if it ain't broke don't fix it.    

Hi, 

MMR (at any point) is considered an optimal response (ELN guidelines). So if you have a stable response, and very manageable side effects then that's a pretty good place to be.

The only reason I can think of that may necessitate a switch of TKI is if you had an aspiration to stop taking your TKIs in the future and attempt treatment free remission. 

David.

Piano Girl (me too!) - I would like to add to the other comments that it is very common to hit a plateau with these meds, and you're right about at the point where that often happens.  We get antsy, after doing so well for a long while, without seeing any more downward progress.  This has happened to lots and lots of us.  The number will stick for months and months, and then there will be an improvement.  I would counsel being patient for another half year, but only if you are not bothered by side effects, and of course, as long as you keep that lovely zero to the right of the dot . . .               

I was on Gleevec and had a hard time with the bone pain so I switched to Tasigna and let me say I should have stayed on Gleevec because the side effects with Tasigna are way worse for at least me than they were with Gleevec . I'm asking my Oncologist to switch me back next week when I have my checkup because I can't take the headaches and spine pain and no sun tan because I work in the sun and I'm dying in long sleeve and pants outside in the 80 degree weather. 

Thanks so much for these comments, they’re really helpful!  I had wondered about the plateau as well and whether I might have hit one.  Sounds like I need to be patient and continue to be grateful that I’m in MMR.  So great to have support and answers here :) 

Philip, 

Perhaps it might be worth discussing dasatinib or bosutinib with your doctor? The side effect profiles are very different (dasatinib for me is much better than imatinib - but for some people it's the opposite).

David.