New Member
Posted 11 March 2014 - 07:32 PM
I talked to my doctor today about participating in a STOP trial. I have been PCRU since November of 2013, so I would need to stay undetectable through Nov 2015. If you have been participated in monitored discontinuation of your TKI, what was your response?
Thanks,
Leesa
New Member
Posted 11 March 2014 - 08:41 PM
Hi Leesa,
I've been off Gleevec for 3 months now, stopped Nov 19th. I started out on six weekly testing, saw my doc last week and I'm now at two monthly testing.
Advanced Member
Posted 12 March 2014 - 12:31 PM
Hi Leesa,
Good for you, congratulations!
After two years of PCRU, I stopped Sprycel in Sept. 2011, after my onc sent me to specialist who then OK'd my stopping.
His instructions were to be tested every month for the first 6-9 months, then every three months for a year or so, then every six months for the rest of my life.
Next month I go for my first PCR test of 2014.
All's well so far!
Best of luck.
ChrisC
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Advanced Member
Posted 12 March 2014 - 01:13 PM
ChrisC,
If you don't mind me asking... How well did you handle side effects? Did the side effects subside after you were off? I would love to come off TKI's to get back to a better quality of life. I have been on half dose of Tasigna (200mg) per day for 8 months now
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!
Advanced Member
Posted 12 March 2014 - 05:05 PM
Hi Jimmy,
The good news is that once off Sprycel there has been a gradual return to better quality of life. The major side effect when on Sprycel was debilitating fatigue: several naps per day, and living one day of activity followed by two days of no activity. BTW, I didn't have any major side effects when switching to Sprycel from Gleevec: no headaches, etc., which I put down to "it must have been the right TKI for me" as I also became PCRU within four months of starting it.
The "oh, well" news is that I continued to age while having CML (wait, that's the GOOD news, compared to the alternative!) and thus have arthritis in left knee, hearing loss (this happened a couple of month after starting Gleevec), ongoing fatigue (still there, just less), etc. — and no way of knowing if any or all of those are related to having had CML or having taken TKIs.
Basically, life goes on, we show up each day and give it our best shot, no matter what. I am unspeakably grateful to have had such an amazing response to TKIs to treat CML, and for over two years now to be as healthy as I am.
Best of luck to you and everyone,
ChrisC
P.S. For the record, I faithfully took 100mg Sprycel daily for 2 years and four months.
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
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