Hello all. New to this site. Daughter switched to Asciminib after failing treatment free on Nilotinib.

Hi Denise683850a6 and welcome to this corner of the Community but sorry to hear about your daughters journey.

I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of T-Cell Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive type of T-Cell Non Hodgkin’s Lymphoma was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

CML is on the rare side, but there have been a few active members over the past few weeks so let’s look for any group members to pick up on your post and get back to you.

You can also click on the main ‘CML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Leukaemia Care UK. Leukaemia Care UK are the UKs main Leukaemia Charity who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

Always around to help more or just to chat

Thanks for your reply Mike. That’s really kind of you. Hopefully someone will be able to share their experiences. 
Best wishes Denise. 

I put Asciminib into the search tool near the top and only found a few posts, do have a look.

Hi Denise,

In February 2023, was diagnosed with CML. (I am in my 70s.) After having very bad side effects with: hydroxyurea (nausea & diarrhea), bosutinib (gastrointestinal), and dasatinib (pleural effusion requiring hospitalization and a few rounds of thoracentesis), I was prescribed asciminib.

In April this year, I started taking 40 mg asciminib twice daily...twelve hours apart.

In the beginning, I had some musculoskeletal pain and nausea which subsided after several weeks. (I found chewing on pieces of crystallized ginger really helped with the nausea.)

In August, I started having sweaty episodes ... hot flashes from the back of my neck down to my hips. I become soaking wet with sweat, however the hot flashes disappear a few minutes later ... as quickly as they come. Sometimes this is accompanied by a feeling of anxiety which takes a bit of effort to calm down and get over. Other than some fatigue (easily remedied with rest), I am not having any additional side effects.

My BCR-ABL1 test are well below the desired 0.1% (0.0053%) showing I am in major molecular remission (MMR) and I am able to enjoy a good quality of life. 

Every person is different and reacts to medications differently. I hope your daughter is feeling much better now and will be able to adjust well to her asciminib soon... as the updated statistics on its success rate have been very encouraging. If not, another TKI (tyrosine kinase inhibitor) may suit her better. 

Warmest regards,
Bari