Hi! I was diagnosed with Chronic myeloid leukaemia in February. I was initially on Imatinib but my 3 month BCR-Abl wasn’t optimal so i was switched to 300mg Bosutinib. I also had low neutrophils on Imatinib and have been taking Filgrastim. My latest bloods are indicating that some of my liver enzymes are too high, which apparently can happen for the first 3 months on Bosutinib. My dr is recommending that I stay off the Bosutinib for 2 weeks and then get my bloods checked again. There was also the suggestion that the 300mg Bosutinib may be stopped completely and my medication may need changed again. This option scares me as i feel like I would then be churning through all the options and what happens when there is nothing left to try? Just hoping that someone else has had this experience or similar and can be reassuring
Hi Ila48 and welcome to this corner of the Community although I am always sorry to read about your journey. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic Myeloid Leukaemia (CML) but I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
I can understand your concerns about churning through treatment options. Over my 25 years I have done just that. Back in late 2013 I was told that the plan that was being used (See my story) would be my last throw of the dice and without it working I had a few years on the clock…… but I turned 68 in Nov and am living a great life…… and the best thing is…. Over these 10+ years a few new treatments have come online so I now have a fall back if required.
CML is on the rare side, but 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.
We also have our Ask an Expert section but do allow a few working days for a reply.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a person with CML in it so worth checking.
Always around to help more or just to chat
