Hi all - i posted a while back that I had been aput on a second line of treatment for my Chronic myeloid leukaemia, Bosutinib, but it had significantly raised my liver markers. Well, they have only just gone down - they still aren’t back to normal so I have remained off treatment for around 3 months.
I have just been started on a new treatment, Asciminib and I am interested to know if anyone else has ever been on it on this forum? I am apprently the first patient in my health trust to be prescribed it. Would love to hear anyone elses experiences!
Hi @Ali48 thanks for posting again and updating us on what has been happening with your treatments and side effects,
I hope others can share their experiences for you.
If you need them the Blood Cancer UK support line are there for you on 0808 2080m 888
Please do keep posting how you are getting on and really look after yourself
Hi @Ali48 Yes I have just been transferred to Asciminib as a third line drug, transferring from Nilotinib. (started on imatininb) I had thyroid problems on Nilotinib plus i was diagnosed with Essential thrombocythemia (ET) as well so was moved. As my BCR was very low i have been put on a low dose which is one tablet once a day, All seems to be going fine so far as far as i am aware but as i was also put on Interferon for Essential thrombocythemia (ET) at the same time it is difficult to know for sure.
@Ali48 £ months off treatment must have been a worry too. I had 6 weeks between mine and that stressed me enough. My first BCR after a month on asciminib was back to what i had been before stopping Nilotinib so that was a relief.
How have you found it so far? Have you had a ny side effects?
@Chrispy yeah it was a long time to be off meds but I was in Haematological remission up until 2 weeks ago and my BCR-ABL, which had been at 20% before starting the Bosutinib was at 16% so really not too bad. You’d think being off meds for that long it’d be through the roof again but it shows you how slow moving Chronic myeloid leukaemia can be.
Asciminib is ok so far. I mean, I’m only on day 5. Ive had some headache issues but nothing too bad. I’m getting bloods done tomorrow so we will see what they are like!
@Ali48 I was diagnosed back in 2003 before imatinib had been approved by NICE so the nhs wouldn’t pay for it but luckily BUPA did. My BCR-ABL dropped slowly but my last one was 0.007 which is why i am on a low dose of asciminib but i will never be off medication all together.
I have had the odd headache too but i hadn’t connected it but they are not often.
