Hi, have members reduced their dosage of TKIs for Chronic myeloid leukaemia? I’m two years in and bloods are showing CMR, although the BCR ABL gene is still detectable. I’m on 400mg of Imatinib. My question is
A Kent consultant believes that a small woman doesn’t need 400mg of Imatinib, whereas a larger man does. He’s had some success with reduced doses. My London haematology team are aware that I’m keen to try a reduction. Has anyone else have experience of this? Or can point me to research?
Great to hear from you again @PoppyDarling.
A very interesting question you ask.
I would like to hear from others too.
I will also copy the Blood Cancer UK nurses @BloodCancerUK_Nurses
Look after yourself
Hi @PoppyDarling,
It is wonderful to hear that your treatment has been effective and I hope you are keeping okay alongside everything?
As you have highlighted, it isn’t unusual for consultants to reduce medication or titrate dosage at certain points along patient’s monitoring as it can prove beneficial. Of course this is a very individual decision which will made made by your consultant and it is worth asking more direct questions to your current team in order you to better understand if this is something they would be keen for.
As with any changes to your medications, the team would very much still monitor your bloods over a short period of time which may guide them with a better understanding of risk versus benefit.
Should you need to talk things through with us, we are very much a phone call away- 0808 2080 888.
Take good care, Lauran
I am average build and on Imatinib. My bcrAble have been negative for a while. I am on 400 mg each day. Although with drug shortages at the moment I am on 4 x 100mg tablets at the moment as the hospital could not get the 400mg tablets.
Hi, yes it’s standard dosage. I also had the 4x100 pills, a pain when travelling, and I travel a lot!
Thank you for this, I’m in very good health. I am also using an integrated health programme which I believe has been very beneficial over the past year. Various daily vitamins, monthly B12 injections and 50k iu vit D per week, has been quite a game changer. I did Rife for three months which, combined with the above, seems to have reset my body. Who knows, it may just be the vitamin regime.
My haematologist is aware that I would like to reduce when safe to do so. I will, of course, do the regular bloods.
I would be interested if anyone else has reduced dosage and their experience.
Very helpful.
Hi @PoppyDarling - I was diagnosed with Chronic myeloid leukaemia 12 years ago. I started on 800mg of Imatinib but after two years had to move to 800mg Nilotinib. It took me a while to get to CMR. Six years ago I had a conversation with my consultant regarding reducing my dosage so I went down to 400mg and then 200mg. My results remained steady and low, so in June 2022 I came off the TKIs entirely. Initially I was monitored monthly - again remaining stable with low or undetectable BCR-ABL results - it does fluctuate. I now get my bloods done every two/three months and all seems to be well.
Of course discuss your reduction plan with your consultant. It’s different for us all. For me a slow reduction made me feel more comfortable.
Let us know how you get on and do let me know if you have any other questions. Happy to help as much as I can 
. Take care
Hi, thank you for this, it’s very helpful to understand others’ experiences.