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Coming off Dasatinib

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Hi all

I was diagnosed with CML in November 2021 when I was 27, since then I have been on Dasatanib and now since September 2024 I have been in a deep remission. Up until 4 weeks ago I was continuing with my treatment as I was told to but then I went on holiday and I didn’t take it and have never felt better. It’s now been 4 weeks without treatment and my doctor has agreed to me staying off it completely and seeing how it goes. I will have bloods done next week and in June.

Has anyone else went in to a deep remission and stopped their treatment this soon? Please let me know how you got on! I am so happy to be off the treatment as it has made the last few years hell for me but I am so scared of how quickly the CML is likely to come back and what that means for my future as I have been waiting since 2021 to be allowed to have children.

I am also noticing I have had a sore throat, cough and rash for the last week and it’s not getting better, is this likely side effects from stopping treatment?

Thank you

Hi Misbah,

Like yourself, I am currently on Dasatinib and had to stop taking it for 10 days last year due to being admitted to Hospital with Sepsis. Unfortunately I lost Deep Molecular Remission (DMR), so I'm back on the medication, Fortunately I have regained DMR. I agree there are side effects, but fortunately I am currently able to manage them.

I hope your attempt at Treatment Free Remission (TFR) is successful and you remain at low enough BCR-ABL levels to attempt starting a family. You are having monthly tests, so your Consultant should be able to advise when you are safe to do this.

Although I don't wish to alarm you, please contact your GP or Haematology Team as soon as possible to get your sore throat and rash checked out, particularly since it isn't improving. This is a sign of infection, which although is likely to be nothing sinister, there is a chance it could be something more serious. A rash that doesn't fade when pressure is applied, is one of the red flag symptoms of sepsis. I had this symptom along with a temperature, diarrhoea and sickness when I had sepsis. The Haematology Team on the 24 hour Telephone Advice Line at my Hospital were brilliant and sent me an ambulance straight away. My Haematology Team also cared for me throughout my stay in Hospital.

Take care,

James