I was first diagnosed with CML in April 2011, during my recent contact with the doctor, it has been suggested that I could reduce my dosage.
Has any one else been recommended to reduce their dose to 200Mg what are your thoughts?
Iv’e been advised that there is a 95% success rate with 5% having to go back on 400Mg…my levels have been either 0 or 0.0007 during the last 11years
Hi @Lord-carl and a big welcome to the forum. I have a different blood cancer but I’m sure there will be others who can share their experiences.
I suppose it’s a good thing that medication can be reduced but can also understand it may cause anxiety as well. The success rate is quite positive.
I’ll await others experiences.
I look forward to hearing more from you
Hello @Lord-carl, welcome to the forum. It must be worrying to change the dose when it has been working for a long period of time. Have you spoken to your CNS about this? They may be able to reassure you whilst being realistice about the potential outcomes. We are happy to talk things through to you on the Support Services Phone Line when you need: Blood cancer information and support by phone and email | Blood Cancer UK. Kind regards Gemma
Hi @Lord-carl . I think if they have advised that it is safe then you can be confident that is correct. Levels that low for that length of time should give you a good chance to reduce your dose and still maintain that level. I think they keep a close eye on your bcr-abl for the first few months so you may need additional blood tests.
I am on Nilotinib and it has been suggested i may be able to reduce my dose shortly too. Some consultants are more likely to suggest it than others and this may depend on your personal risk from long term use of imatinib.
Hello, yeah I know your right it’s just having that ‘leap of faith’
Thank you for your thoughts
I am so glad the you have found our forum and taken ‘a leap of faith’ and posted.
When you are used to being on one dosage of a medication and your doctor suggests lowering the dosage I am sure I would feel anxious too, the old ‘what if’s’ would set in.
Yes, I expect it will be ‘a leap of faith’ but as long as you are being monitored closely .
@GemmaBloodCancerUK has already been in contact with you and if you need to talk to someone the Blood Cancer UK support line is there for and so is our forum.
Perhaps write down all those fears, thoughts, questions etc and make sure your doctor answers them.
I look forward to hearing more about you and how you get on.
Look after yourself
Hi, I have had the same mentioned to me. Like you I have been on 400mg dose since being diagnosed with CML in 2006. With me due to a short hospital visit when I had a period of nil by mouth and a few days off from medication my levels started to rise and the conclussion was “if ain’t broke don’t try and fix it” and therefore still on the 400mg dose
Hi @Tony1 how are you doing, it has been a while?
Look after yourself