I’m seeing my haematologist in a couple of weeks to discuss swapping Imatinib for Bosutinib. The main reasons are fatigue (less since ferratin infusion for anaemia), hair loss and eye oedema.
Did anyone swap and found worse side effects? Or did you find the hair loss stopped and the eye swelling reduced?
Has anyone had eyelid surgery or the draining of the under eye area? My haematologist said a patient had eyelid surgery and the swelling didn’t return.
Hi @PoppyDarling, what a dilemma for you I hope someone will be able to share their experiences.
My hair has really thinned since my Chronic lymphocytic leukaemia (CLL) diagnosis 18 yrs ago. I have never had any treatment for the Chronic lymphocytic leukaemia (CLL).
It’s scary having hair loss isn’t it
I have learnt to manage my fatigue daily. I am suffering today after overdoing it on Saturday.
My niece in law, who has not got cancer, is having her under eye area drained and awaits a date for the op.
Please let us know how you get on and what you decide.
The main thing is that you look after yourself and keep your haematologist informed of all your side effects.
Hi @PoppyDarling,
Thank you for sharing this. I hope you feeling okay?
You’ve asked a really good question and im sure there will be people on the forum who have had their own experience with Bosutinib.
It is reassuring to know that you have an appointment booked in a few weeks to discuss a potential change of treatment with your consultant. It may also be appropriate for your haematologist to seek an Opthalmic opinion should your symptoms persist or become more troublesome.
In case its helpful in any way Leukaemia Care’s CML booklet page 26 talks specifically about Bosutinib- Chronic Myeloid Leukaemia (CML) - Leukaemia Care online store
We know that managing side effects of medications can feel really difficult so please do know that if you ever want to talk anything through our support line is always on hand- 0808 2080 888.
Hi @PoppyDarling I did not decline treatment, no treatment was advised or required at the time of diagnosis and I have been on watch and wait (active monitoring) ever since.
When I was first diagnosed my prognosis was 5-10 yrs. That was now 19 yrs ago.
Research, thinking and treatments have come on leaps and bounds in that time.
Separately, why was my perfectly legitimate post about covid jabs and a possible link to an increase in cancers, backed by an eminent oncologist taken down and blocked?
Hi @PoppyDarling ,
So sorry for the delay in our reply. I am just messaging you about this now. However if you wish to call us at any point to talk things through, please feel free to do so- 0808 2080 888