Hi everyone. Being in Chronic myeloid leukaemia CP after one year therapy T315I mutation has been detected.
One of doctors says 10 year survival is achievable logically and avoids to estimate further though the chief doctor says Chronic myeloid leukaemia has a near-normal lifespan repeating what initially had told me . I feel a bit confused o
Its my right to know.
I m going into Ponatinib and maybe Asciminib but is there anyone facing the same form to actually inform me what should i expect
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Oh @Alexandros77 I think that I would feel more than a bit confused and anxious.
Would you feel less confused if you emailed copying both doctors and asked for clarification.
However if you are not satisfied perhaps you could contact PALS (Patient Advice and Liaison Service) where your doctors work.
I have Chronic lymphocytic leukaemia (CLL) and was given a life expectancy of 5-10 yrs and I am still here 21 yrs later.
Be very kind and look after yourself.
Please do let us know how you get on.
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Dear @Alexandros77 - welcome to our forum. I’m so glad that you’ve found us 
I’m not able to comment from a medical perspective, but I have been living with Chronic myeloid leukaemia for almost 13 years so I have a frame of reference. I’ve had two types of treatment - imatinib and nilotinib and I’m currently treatment free although under close monitoring.
Each of our journeys are unique and I’m not familiar with the T3151 mutation, but I’m sure others with similar experiences will also step forward.
You might also find it helpful to speak to one of Blood Cancer UK’s Support Service Nurses. They are lovely and can be contacted for free on 0808 2080 888.
Do take care of yourself and keep posting here. It’s a very supportive community that can help navigate these uncertain times.
Maggie
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Thank you for your reply.
I ll have to get a third opinion I guess. I know that this mutation couldn’t be treated before 2013 and now ponatinib is available and asciminib with less side effects in high doses.
All my life I ve been looking after my dad with two strokes that passed away almost 90 and now my mom almost 87 suffering from a lot of issues and now dementia.
I ll have to live long I carry my duty with my 14 year old son.
Last 9 months I suffered a lot of stress working as a lawyer and having a vitrectomy last November.
Hope I will cope with it.
Thank you
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Thank you for your answer.
I guess your case sounds easier than mine.
I don’t know how I will work it out as currently I’m a lot of stressed anxious disappointed and frozen.
Στις Τετ 19 Φεβ 2025, 20:41 ο χρήστης MaggieLT via Blood Cancer UK Online Community Forum <notifications@bloodwise.discoursemail.com> έγραψε:
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