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just another article about the cost of gleevec in comparison to other countries

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#21 Buzzm1


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Posted 09 October 2016 - 09:31 PM

Buzz, I have been very fortunate with ins covering my Sprycel, but with a new year coming I get a knot in my stomache wondering if they have any surprises for me. Ron and I are both retired on a fixed income we paid all our bills off with his severence pay so we live comfortably, and for the first time in our lives we have a small savings acct. You know how it is (send all your kids to college so they can get a job at McDonalds..If they start making me pay a large co-pay I will stop taking my Sprycel. My pcr has been 0% for six years. I just plain refuse to pay for it. And I just refuse to go back to work as a pole dancer.Gravity has been my enemy and if I got on a pole once I got upside down I would probably suffocate!     Take care Billie

lol Billie, the visual is almost too much.  If you get hit with a large, or any, burdensome Sprycel copay, maybe you should try to obtain a Sprycel copay assistance card that others here have mentioned.  Otherwise, six years of undetected certainly qualifies you for an attempt at cessation.  

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


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.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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#22 xGunner



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Posted 20 October 2016 - 04:10 PM

I have been in a high deductible health plan for many years. The first prescription in January came straight out of my pocket. I believe the deductible for 2016 was $5800 or something like that.


I was fortunate to find the Gleevec co-pay card this past year, such that it covered the deductible. My HSA has been getting slowly drained every year since diagnosis. This year I was able to start building it back up a little.


We may not pay full price on the prescription, but this disease has taken about $40,000 out of my pocket.

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