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#1 cmljax


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Posted 12 January 2018 - 09:32 AM

I sometimes get very down about having CML - I mean nobody wants this, but I remember telling my wife while we were waiting for my final diagnosis that if I have to have leukemia, CML sounded like the best "choice."  Of course, at that point all I knew about TKI's were that they were highly likely to control CML for a long time, that I would have to take it for the rest of my life and that there was about a 30 - 40% chance I might have some side effects (based on Tasigna prescribing information). Only the first of these assumptions turned out to be correct. I started taking Tasinga  300 mg 2x/day and everything was fine for the first month or so and then all hell broke loose, including 9 confirmed squamous cell skin cancers and approximately 40 other pre-cancerous skin lesions over a 4 month period, heart arythmia which was debilitating at times even thought it turned out to be benign PAC's, swollen salivary gland incidents about every 2 - 3 weeks for about 6 months followed by mutliple mouth ulcers, digestive system problems, itchy scalp, periodic insomnia and dry mouth/eyes. But through all this, my PCR was plummeting. The medicine with which we all have such a love/hate relationship was doing it's job on the biggest foe of all - my CML.


One day during my dark days period (as I call it), I decided to write down my gratitude list, something I learned 20 years ago in AA. It helped and it still helps today even though most of my side effects have resolved with dose reduction.  A couple of days ago, my wife forwarded this to me:




Take the time to read Holly's post.  It is powerful, sad and uplifting all at once, and most importantly, hits me right between the eyes with the message that I continually need to hear - be grateful for what I have and cherish each day I can get up and lead a pretty normal life. I am also incredibly grateful to have this support group. You guys along with my incredible wife and amazing dog are what got me through the dark days period and I will be eternally grateful for all of you. 

Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative

#2 hannibellemo


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Posted 15 January 2018 - 03:50 PM

Thanks for sharing this post. It is so easy to get caught up in the day to day bull shit and forget the big picture. I'm 66 and I think I'm way too young to die, can't imagine knowing I will, and soon, at 27! 


Makes all my worries incredibly small stuff!



"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>

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