What are the odds of coming out of molecular remission? I keep forgetting to take my meds and I am concerned this will come back to bite me. Still, even if I was more responsible and didn't forget, how much of a concern is there for coming out of molecular remission?
Odds of CML Returning After PCRu?
Posted 25 September 2011 - 03:15 PM
Congratulations on PCRU! If you want to stay that way take your medicine as instructed. It doesn't work nearly as well when it's left in the bottle!
Set alarms, your mobile probably has one, use the calendar app on whatever e-mail program you use, etc. You aren't cured, you've just had a very good response.
Trey just posted a discussion in the past week on that very subject, or a closely related one, check it out. "TKI Drug Response Rates"
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 25 September 2011 - 04:31 PM
Rick- I went from PCRU to back on the scale and did take my meds. Don't get lax or it will kick you in the butt.
I have cancer but it doesn't have me
Posted 25 September 2011 - 05:37 PM
There is not one simple answer. But the important issue is that there are various levels of PCRU, although no one knows where they are. There is "barely PCR undetectable" which means the PCR is just under detectable levels. Then there is "deeply PCR undetectable". It is much easier to lose the "barely PCRU" than to lose the "deeply PCRU". By the way, I have made up these terms, so you will not find them anywhere. But I think they communicate the point.
The IRIS trial is the longest running large scale Gleevec study. It shows that almost all who achieve PCRU and also pass the 2 year mark will not lose the status. Some have, and lack of adhereance to drug therapy has usually been blamed.
This points out an important issue, that after achieving PCRU it is important to keep driving the number of leukemic cells downward. At "barely PCRU" there are still an estimated 1 million leukemic cells in the body. So to achieve a lasting CMR/PCRU, the patient cannot assume that they can just ease off at that point. It probably takes another 2 years (estimate) after initial PCRU to get down to "deeply PCRU" whereby the remaining few leukemic cells (all higher level progenitor/stem cells) are in deep hibernation, if they still exist (and they likely will). Some have stopped taking the TKI drugs at that 2 year PCRU point, and most relapse within 6 months. This is why I personally believe that reducing the dosage after 2 years of PCRU, instead of stopping drug therapy, is the better approach to keep the deep response and reduce TKI drug side effects.
Posted 26 September 2011 - 01:51 PM
What I'd give to have your health!!!! I am not even near MMR and I have been taking my pills religiously for almost 23 months! Keep taking your pills until further notice! I hope that one day soon, you and all other CMLers (including me and my sluggish, broken-down-in need of repairs blood factory) will be able to ditch them and be cured!
All the best, and long life to you,
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