Am I supposed to feel better since reaching PCRu? I was diagnosed 11/2013, and reached complete molecular response by 3 months on Tasigna. One year, four months and really don't feel any better, in spite of my 0.000% PCR results. Any chance I'll ever feel better?
Am I supposed to feel better since PCRu?
Started by
tiredblood
, Jul 22 2015 09:21 PM
4 replies to this topic
#2
Buzzm1
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Posted 22 July 2015 - 09:28 PM
Am I supposed to feel better since reaching PCRu? I was diagnosed 11/2013, and reached complete molecular response by 3 months on Tasigna. One year, four months and really don't feel any better, in spite of my 0.000% PCR results. Any chance I'll ever feel better?
I began feeling at least a little better when I began reducing the dosage ... just think, 8 more months of PCRU and you can think about reducing your dosage, or even going cold turkey.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
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#3
chriskuo
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Posted 23 July 2015 - 01:38 AM
How are your CBC and CMP counts? When your blood counts are under control, you are usually feeling the side effects of the TKI, not anything to do with the CML itself. what were your symptoms when you were diagnosed?
Depending on your drug and your side effects, you may need to look at switching drugs or treating the side effects.
Depending on your drug and your side effects, you may need to look at switching drugs or treating the side effects.
#4
tazdad08
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Posted 23 July 2015 - 07:38 AM
I think that the only two ways that we feel any better is 1) we eventually accept what the tki's do to us and forget what "normal" feels like, or 2) we push to lower our dose and find the happy medium! I chose #2. I kept lowering my dose until I was at 600mg per week. That was too low to maintain me. I lost pcru 2 months ago. back to full dose. But I have to say that the 2 years on 600mg per week was a much better life for me. I will eventually lower my dose again.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#5
pammartin
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Posted 23 July 2015 - 12:46 PM
That is a double edge sword question. The relief you feel from becoming undetectable is great, but the side effects of the TKI can still be challenging. Everyone has their own set of values when it comes to this question. I have to admit the further along I went after reaching undetectable the more the side effects bothered me. They did calm down considerably after about 6 months but I never stopped having the flushing and headaches.
If I have read on here once, I have read 100 times that finding the drug and dose that is right for you is the best way you can manage your disease and not let it control your life. I believe that feeling better is a state of mind in many ways.
I hope you find your own level of comfort and feel as good as you are able.
Pam
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