Treatment

Hi there! I’m sorry to hear about your husband. I’m sure it has been really difficult for you all. I was diagnosed with CML in the chronic phase 18 months ago. I was on Imatinib at the beginning but once it got to 3 months my doctors weren’t happy with my molecular readings as they were decreasing too slowly so at that point they changed my medication to Bosutinib. I was only on it for a short while as it started to affect my liver and then I was advised to stop taking it. During the summer of 2024 I wasn’t on any medication as we waited for my liver levels to go back to normal. In September 2024 they decided to start me on Asciminib even though my liver levels were still too high. Although they had come down a good bit. I’ve been on Asciminib ever since and have now reached medicated remission. My liver levels have only just gone back to normal in the last month. 

May I ask what phase your husband was diagnosed in? As I was diagnosed in the chronic phase my CML was caught very early. The phase your husband was diagnosed in may shed some light on his doctors approach to treatment. Based on my own experience I do wonder why they had kept him on Imatinib for so long but then there must be a reason for it and perhaps specific to your husbands case. I would really push for answers and ask as many questions as you can just so you have all the information. Sorry I can’t be of more help and I hope your husband starts to feel better. 

Hi thankyou for your reply my husband is also in the chronic phase. Glad your doing well. I will ask the question I suppose I just get a bit anxious as for 8 months we were told his symptoms were depression it was only due to a well man clinic blood test we found why he was so tired and ended up having a phone call at 12 pm from the hospital to attend because his white cell count was so high. Would just like a decision on what drug they want to use always feel we are in limbo. Thankyou once again for your reply it's very reassuring.

You’re welcome. I would definitely push for more answers and a definitive plan. They might have their reasons for going about it in this way but if the Imatinib isn’t doing its job then I would be of the opinion it needs to be changed to something else. Don’t be afraid to ask questions and I would even advise writing all questions down before an appointment so you know exactly what you want to say. 

Hi Millpool88ac11 and welcome to this corner of the community. I am Mike and I help out around our various blood cancer groups. 

I don’t have CML but have been in my journey with 2 very rare types of T-Cell Non Hodgkin’s Lymphomas for 25 years.

The one thing that both my wife and I found helpful was connecting with others on the same journey….  and in some circumstances actually ‘talk’ with others……..

You have made a good start by finding this group but you may want to widen your support base by checking 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.

Many thanks for the advice Mike. It really helps to know how other people's experiences are and your not alone.