Chronic Myeloid Leukemia (CML)

What is your current bcr reading and how often are you tested. I was diagnosed in December 2022 with a reading of 42% and I have been on imatinib.My current reading
is 0.3% and my doctor indicated that I would need to go on stronger meds to get a deeper response.

Hey @billybee (love the username), I'm not sure @craighatescancer is active on the forum. I want to get you connect with other CML-ers like @anglis @living @annareenu @suzie71 @quita123 @pam62.

What medications are you on now? Care to share more about your CML journey thus far?

I just saw this post, and I have posted my journey, but for those who have not seen it yet let me just say that CML is treatable. Diagnosed in 1998, and just went for my blood test yesterday as I have been undetected since 2022, and off all treatment since 2018. I go every 6 months for my PCR test to keep an eye on my CML. Just praying that it is all good, and if all is still good when I do my Feb test it will be 6 years of treatment free remission with no BMT. I did it with Gleevec.

Just started my JOURNEY with CML using GLEEVEC

i was diagnosed with CML
three years ago, I was put on Gleevec however I suffered from Edema so bad that when I walked i could almost hear the water sloshing
I was then put on Sprycel, which has worked fabulous for me. I’ve had very few side effects a little hair thinning. Other than that. I’ve been moving right along. My blood test have come back perfect so if anybody is suffering with glee back, they might wanna move to Sprycel or now? The generic is desatanib

@lgreen809 The first leg of any journey is usually filled with questions, concerns and yet hope for a positive experience. Often, one of the things that can help make a journey more successful or comfortable is being able to speak with others who have already walked that path. So, welcome to Mayo Connect where you’ll meet a number of members with CML such as @dmmurph, @suzie71 @billybee and others who share their experiences.

Since you’re new to your CML diagnosis, would you like to share a little more about yourself? Were you having symptoms that led to the diagnosis? How long have you been taking the Gleevec? Are you noticing any improvements in your symptoms?

@lgreen809

I was diagnosed in 2018, started on Sprycel 100mg shorty after. Worked through some side effects, fatigue and edema being the ones I still deal with. Recently started on a water pill that seems to help the edema some.
My tests have came undetectable for almost 2 years now.
I have been given the option to stop taking the sprycel, very uneasy about what happens if/when treatment would have to start again. So little information out there.
I have opted to reduce to 50mg and am ok dealing with side effects for now.
The whole thing was very scary in the beginning. I chose to deal with it the best I could, adjust my life as needed, and keep moving.

Hope your journey goes well.

@lgreen809, how are you doing on Gleevec?