I was told it's incurable and now they're saying since the leukemia hasn't been showing in my blood tests for two years that they can take me off chemo pill (sprycel) and just check me to see if it comes back. Anyone else do this and what happened? I'm truly scared to go off. Help anyone?
Hi. I’m currently on Sprycel and have been since December 2017. I was in remission in one year and stayed for a total of two years. I literally just found out that I’m no longer in remission and am off Sprycel and will be starting on Tasigna. Everything will start all over again. I would stay on it if you are able to handle the side effects. I am not looking forward to this as my first 9 months on Sprycel were excruciating. Just my opinion. Good luck and god bless
I have CML. I went through 6 months of chemo therapy and then decided to stop. My new doctor suggested an alternative treatment and we began that. Four months later, with almost no side effects, I am in "remission." Now I still take a pill, hydroxyurea to control my white cell count, which is generally a bit on the high side, but not le before when they were "off the charts." Here is a link to an article about CML and the various treatment protocols. Hope you enjoy it. It's not an article that is hard to understand and helped me a lot, to get a handle on my leukemia. God bless!
I know exactly how you feel Charlotte, I will go over my options again next
visit to my hematologist. Thank you for your input.
In one way I’d love to go off and not have the side effects but on the other hand so far it’s come back on everyone who stopped within two years so I don’t know what I want to do.
I too have CML and have been on chemo pill for 7 years..I have been in remission for the past 5 years yet my doctor says I cannot go off the chemo pill or it will come back. I wish I could stop the chemo pill. Your story was interesting.
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