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Personal coping mechanism for my CML journey

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#21 tazdad08


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Posted 21 July 2015 - 07:46 AM

Hey Kat73, I havent been retested yet. I go in about 6 more weeks. My onc wasnt really very concerned... well, wasnt scared. I have grown to really like my drs. The odd or "funny" thing is this... On the very appointment that the blood was drawn, we talked about the risks and benifits of me only taking 20% of my meds. He asked me to tell him in my own words what could happen. I said "in a nutshell, I will relapse, for lack of better words. Then I will go back to full dose....respond to that dose just as quick as did when diagnosed..... and I will have to learn to live with all those shitty side effects again!" he giggled and said "as long as we are on the same page." I do have to say that the phone call telling me that i was no longer undetectable hit me harder than the diagnosis. It surprised me how nuch it bothered me. I am greatful to have an onc that is so active with the cml world. He is always taking about whats coming in the future.  

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!

#22 kat73


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Posted 21 July 2015 - 04:48 PM

Yes, having hope and a future are powerful concepts!

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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