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

  • 3 replies
  • 4 subscribers
  • 14 views
  1. Hello everyone. I’m posting on behalf of my daughter. 25 now but 16 yrs old at diagnosis. 
    Paris had an ok response to imatinib but her team were keen to switch her to Nilotinib after a year. She became undetectable after 12 months and remained on Nilotinib (half dose for a year) until this May when her team decided she’d be a good candidate to try treatment free. This decision was taken with a view that long term Nilotinib may cause cardiovascular/pleural effusions problems later down the line. Sadly within the 3 months her bcr-abl had risen fairly quickly. We met with her team at The QE centre for clinical haematology on the 27th August and she started on 80mg of Asciminib the following day. By the 30th August we spent a night in A&E as her temp had spiked to 37.8 and she had a very sore throat. We were advised to get bloods done to check she wasn’t neutropenic etc. Bloods were ok & in normal range but she was given intravenous antibiotics and sent home with a 5 day course. 
    I just wondered as a very worried Mom, what side effects anyone else has experienced in the early days of Asciminib. She’s experiencing some diarrhoea, fatigue which we expected. Some nausea and today has another sore throat. I’m worried sick it may be another infection. She’s is back in for bloods on Wednesday and last Wednesday’s bloods were all ok again. Neutrophils at 4.50 White count 6.99 Platelets 3.50. Haemoglobin 135. 
    I hope this is just as her body is adjusting to the new treatment as she had few problems on Nilotinib. 
    Many thanks in advance for reading and would really appreciate any of your experiences. Wishing you all the best. 
    Denise. 
  • Hi  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

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • 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 Mag near the top and only found a few posts, do have a look.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge