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CML Dasatinib medication

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Hi, I was diagnosed back in 2018 with CML, my medication commenced with Imatinib, 6 months later was moved to Dasatinib.

Today I have been advised that I am being considered to withdraw from taking medication, Dasatinib has worked so well for me, apart from the side effects, I have been in remission for nearly 4 years.

I was wondering if anyone else has come off medication, has anyone got any advice, I know research is still happening, I am just a little concerned about what happens if it all starts up again, I have been identified as having the extra chromosome.

 I have some questions for my consultant once I get my appointment, I would very much like to hear peoples views, especially if you have travelled down this path.

Hi, when you say your clinician is considering whether to withdraw your medication, I am assuming that she/he considers you to be a good candidate for TFR (treatment free remission), is this correct?

Do you have access to your PCR results? Again I assume you have had a stable deep molecular response to dasatinib.

There are quite a few people over the last 10 years who had a stable DMR (deep molecular response over several years) who have taken part in the various STOP trials in the UK and Europe (DESTINY; STIM/STIM2;EuroSKI etc.

These studies have shown that around 40% of those with stable DMR over several years, can successfully achieve long term TFR. For the <60% who showed a molecular relapse at any point up to 9 months after stopping, restarting the TKI got them back to their previous molecular response within 3 months. There were no cytogenetic relapses after restarting therapy.

Hope this is helpful,

Sandy

 

Thank you for your response Sandy

I have yet to have a face-face conversation with my consultant, my understanding I have been in remission since 09/2018 no cells detected.

BCR-ABL undetectable MR5, neutrophils 6, platelets 333, MCV88 others dated 10/21

thank you for the data, it helps to understand the research figures.

I am on 100mg Dasatinib 

DMR over several year’s, how many is the average, is 31/2 years considered as several?

 

Lesley,

You are an excellent candidate for "treatment free remission" (TFR) test. You have two choices.

1. First reduce your dose from 100 mg to 20 mg dasatinib for six months. This will help you withdraw from dasatinib. There are withdrawal symptoms when stopping dasatinib suddenly.

2. Stop all at once and track PCR monthly.

I am currently in my first year of stopping dasatinib (20 mg - every other day) and have so far remained PCR = undetected. My one year anniversary is next month. If I make it to one year, my odds of remaining in TFR go up considerably.

Good luck.

May I know if in 20mg can be said relatively higher probability to be treatment free ?

I am not sure I understand your question.