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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
June 3, 2023
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A MyLeukemiaTeam Member

Kerry
Once in complete molecular remission for a period of time it is possible to go off chemo. How long you can remain off is different for each individual. It depends I think on how fast you achieved complete molecular remission to begin with.
So for me we caught CML in the early stages and by year 8 on chemo it was killing my stomach and causing Lpr which is the worst kind of reflux. So the solution was to go off chemo and hope I remained in remission. That was in Dec2019! And I still remain off chemo.
My body still feels the effects from chemo to this day. And since getting reflux I can’t eat spices, condiments, garlic, lemon, lime, green peppers or anything acidic and I tack Canadian brand Gaviscon after all my meals and if I do eat the wrong thing I know because I loose my voice as the reflux hits my voice box all thanks to chemo!
Getting off chemo is possible just no one can say how long. I still do bloodwork every 3 months.
Best of luck

June 4, 2023
A MyLeukemiaTeam Member

I was diagnosed with CML in 2016. My blood tests have shown no evidence of Philadelphia Chromosomes since 2019.
My Dr. & I have discussed the possibility of me going off of the 400mg. of Imatinib I am taking daily.
According to him, in recent studies only 25% of people do not have to go back on some kind of medication. There are also reports of people going into the advanced stage of the disease. Definitely talk to your Dr. Do I like taking this medication & the side effects it causes, NO! I do however cherish the time I have with my family!

June 4, 2023
A MyLeukemiaTeam Member

My Doctor said there is no remission because if you go off your medication Your number will go up. I was told that I've be on medication the rest of my life. Talk to your Doctor. They might have another answer. I was very sick this past winter and couldn't take my medication. In December my blood work wasn't showing Leukemia. Then I was off my pills and my last appointment it showed. So I would definitely talk with your Doctor. Lots of prayers.

June 3, 2023
A MyLeukemiaTeam Member

Thank you posting this! I was going to talk to my oncologist about that my next visit. I think I will be thankful for what I have!

June 17, 2023
A MyLeukemiaTeam Member

I was diagnosed in 2019. I achieved major molecular response in less than a year. At year 3 and having remained in MMR for 3 years, I asked if I could try 200 mg of imatinib. Although it was slowly returning, the trend was numbers going up….0.03, 0.1. I went back to 400mg and last count was 0.014. I doubt that I will try again as my side effects are not that bad-mostly diarrhea and hair quits growing.
I am so very thankful to have a wonder drug!

June 16, 2023

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Kodak, TN