Hi Joe
Sorry to hear about this news. I was on imatinib for around 4 years and had my creatinine levels and EGFR tested twice during that time. Creatinine was 108 and 112. I was also concerned about this and, like you, was told by the haematologist that this wasn't at a dangerous level so I ignored it. I am going to be 47 in May.
I have read in a few places that imatinib can raise creatinine levels and that this is not a cause for concern provided it is monitored carefully. Here is an article that discusses this property:
https://pubmed.ncbi.nlm.nih.gov/26795084/#:~:text=Imatinib%20completely%....
I don't understand it as well as I should, but the key takeaway seems to be its conclusion: "imatinib increases serum creatinine independently of any glomerular dysfunction and is fully reversible on imatinib cessation." If I read this correctly, it means that imatinib has the tendency to raise the creatinine levels without any underlying kidney damage, and that the levels might return to normal on stopping. This is what happened to me. My latest test in 2024 showed creatinine back to 92.
As far as I understand it, the EGFR is actually calculated based on the creatinine levels, as well as several other variables such as age, sex, ethnicity, etc. So the low EGFR is calculated because of the high creatinine levels, which may not indicate that your kidneys aren't functioning correctly given that the creatinine might just be high because of the imatinib (but bear in mind I'm not a doctor!) Either way, if it were me I'd insist on monitoring this carefully in case you need to switch to another TKI somewhere down the line - given imatinib is working well for you and it's the least potent of the available TKIs, there's no reason to fear a change.
I hope this helps a little bit!
Best wishes
Martin