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Stopping Treatment

A community member messaged us and asked the following: "Hi there I have CML. I'm I was diagnosed in July 2017. I started on dasatinib a month later. I have been in remission since April 2018. Its been a positive journey to date. Bar the bone marrow biopsies and side effects of the drug. The consultant hematologist that's treating me wants me to trial coming off treatment. He believes I am a good candidate to try it. I was wondering has anyone else been in my position and tried to stop treatment? Has it worked or not? I would love to hear the pros and cons. I am a female aged 50. Thank you. "

What are your thoughts and experiences on stopping treatment?

  1. I am in remission so I came off the Imatinib 400mg in May 2021. At first it was all good then slowly bone and muscle pain began and honestly has been almost non stop. The worst part is that I haven’t been able to get relief with meds. I’m hoping now to get a medical marijuana prescription. Anything to help me sleep.
    On the positive side my skin looks great, my hair looks good, my eyes aren’t yellow and my digestion is coming back to normal. Not there yet.


    I have a pretty strong pain tolerance so to not be able to sleep and hardly walk it is very painful. That’s my one complaint.


    Good luck to you!!!

    1. I was first diagnosed in 2012 and I've had two chemo breaks since then. The first was for three months. The relief was incredible. I'm on my second chemo break now, also for three months. I agree with . There is some relief in some symptoms from the chemo, and then an uptick in the symptoms of the disease, for me at least. The chemo break was worth it for me because my body had reached a full molecular response on both occasions. I believe in doing everything in moderation so I just didn't see the need in giving my body more chemo in that time frame. I am a post menopausal woman and in my fifties as well. My motto has always been, "less chemo is best chemo." I'm comforted when my oncologist agrees. I hope this was helpful and that you find the right solution for you. All the best, Maria.

      1. I totally agree ithat getting off the TKI is best for your body. I am a 74 year old woman. I was diagnosed with CML in 2010. As you know there were many side effects associated with the TKI. This is also my second break. The first was four years ago and lasted 3 1/2 months. I am now on my second break and it has been 8 months. I am hopeful that this is a permanent remission.


        Thank you so much for replying to my post. It’s comforting to communicate with someone who feels what I am feeling and understands.


        Regards
        Rickie

        1. I really appreciate that . I feel the same way. Thanks so much for being a part of our community. It means the world. Sincerely, Maria.

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