I was diagnosed with Chronic myeloid leukaemia in September 2024. I had a bone marrow biopsy and was started on Bosulif. My last BCR-ABLmy levels are undetectanle. I had never seen a copy of my pathology report so I received it last week. Much to my surprise my FISH analysis shows I have a 3 way translocation involving chromosomes 1,9 and 22. Only 5% of people with Chronic myeloid leukaemia have this. I am worried now about my overall survival rates and if this effects my outcomes. Does anyone know? Thank you.
2 Likes
Oh @Tracy56 welcome to our forum, I am glad that you have found us.
This really is a question for your specialist nurse, if you have one, or your medical team as we are all very unique, complex beings and I find I need to write down all my fears, questions and practicalities beforehand. I also have to ask for clarification if I do not understand something.
Not knowing is worrying.
Please do let us know how you get on and be kind and really look after yourself
2 Likes
Hello @Tracy56
Welcome to the Forum.
Thank you for posting and sharing a little about your Chronic myeloid leukaemia diagnosis and treatment. It’s great news that your last blood results state BCR-ABL is undetectable.
Genetics linked to blood cancers are very complex. There are many genes that we know about, (and some that we still don’t know at the moment) and how they relate, affect, or cause blood cancers. Some genes are useful in indicating whether a certain treatment may work or not, others can offer some insight into likely progression of disease or other genes may be linked to poorer outcomes and life expectancy.
Whilst knowing about individual genetics, and what they may or may not indicate can be helpful sometimes - it’s really important to know that we’re all individual, and genetics alone don’t determine our overall survival.
As Erica has suggested, do discuss your worries with your nurse or Consultant when you can. Unfortunately, the translocation of the Philadelphia chromosome (9, 22 and 1) is not the only gene involved in Chronic myeloid leukaemia, so you would need to ask your specialist if you have any other mutations or translocations.
I hope I haven’t confused you too much, I just wanted to try to explain that knowing about overall survival is very complicated and genetics only ‘guide’ the data. There are multiple factors so it’s always best to ask a Consultant that will have all of the information about you and (possibly) more of your genetic results.
Please do get in touch if we can support you, either email us or call our support line: 0808 2080 888.
Take care. Heidi.
1 Like