Does anyone have chronic myeloid leukemia (CML)?

Thanks for asking Colleen. I am doing well on the dasatinib 100mg daily that I started on Nov. 1. Have some minor fatigue but an afternoon nap when it hits does well. No other side effects from the medicine, and I have no symptoms of CML. My hematologist/oncologist said he would expect I should not have any side effects from the med, and for me to continue my normal everyday activities. I do a lot of volunteer work 3 days a week, and my wife and I are very involved in our church, so I am at ease with God walking with me with all going on in my life.
Thank you and Mayo clinic for this wonderful website for us to exchange information and help each other.

Starting a new journey with a diagnosis of CLS please share any helpful hints for me to get started and begin preparing for this journey. Thank you!

This is a oops I just recently was diagnosed with CML, any help is appreciated.
Thank you
Bonkers

@bonkers , Welcome. I moved your post to this existing discussion:
- Does anyone have chronic myeloid leukemia (CML)?https://connect.mayoclinic.org/discussion/does-anyone-have-cml/

I did this so you can easily connect with members like @pam62 @suzie71 @dmmurph @amongst @crop and many others.

Bonkers, I see this is a recent diagnosis for you. Have you already discussed a treatment plan with your doctor? What's next for you?

@colleenyoung
Hi Colleen no I have not met with any doctors yet. We meet This Friday at 8am I am a little anxious about what to expect. I have been doing so research/reading trying to prepare myself at least a little.
Bonkers( SharH)

@bonkers, how did the appointment go? What are the next steps?

Hi Colleen,
Thank you for asking. The appointment went okay. We did not have all of the results back from all the testing so
We were unable to move forward with anything. Dr. Matin did review my history from this past year, took time to talk with me and my husband about the diagnosis and tried to assure me we have time to figure it all. I believe that I just was hoping to get started right away! We do not see her again until January 5th. Which seems like so far away! I have been doing some reading on articles related to how cancer changes you, not just the illness side of it. I can relate to Spot it talks about even though I am in the beginning stage of this journey. .I am very emotional cry easily especially when it comes to family. I already get fatigued easily and have difficulty with breathing when I am up moving around. So my husband and I already have had to make life style changes. It has taken 11 months 7 hospital visits for them to figure out what is wrong, so we already feel the stress.

Carolyn I am 88 years old and was diagnosed 1 year ago. I did not do well on my first medicine, so I was switched to Bosulif 100. Mg. I am supposed to take 3 pills a day, but am only taking two because I had a severe reaction to 3. Two pills are okay. My playtlets kept getting high and higher so I had a bone marrow test and I was diagnosed with CML. Most troublesome is feeling tired and weight lose. I am still surprised when checking the cancer box in any medicine survey. I have had many blood tests and I am not making much progress.

@cbernhart1 Welcome! I can so relate to checking ✅ the ‘cancer’ box when filling out medical forms. Though I’m in remission I still have to mention the fact. But it doesn’t have to define us.
It looks like you found the sweet spot in your Bosulif dosage. As we age, our bodies aren’t able to process many of the meds as well as when younger. (Hah, as with everything else, right?! ☺️) There was some fine tuning to my meds as well. Sometimes the ‘recommended dosage’ requires adjustment between efficacy and toxicity.

You mentioned not making much progress in controlling the CML. How long have you been taking the Bosulif?

@bonkers Thinking about all of us on this CML journey. I'm a 78 yo male in Texas and was diagnosed with CML 10/25 and started on 100 mg Dasatinib (Sprycel) on 11/1/25. I have confidence and faith in my hematologist/oncologist for his suggested treatment of the Dasatinib and hopefully in 2-3 years CML will be in remission. I find myself tiring more easily than in the past, so I take a nap when needed. I am continuing with my normal daily activities otherwise, (includes volunteering 3 days a week) as recommended by the doc. I have a wonderful loving and caring wife that keeps me on track, along with immediate family ( 2 children and their spouses, and 4 grandchildren) living in the same town.
Keep on keeping on and we all have to do the best we can do and rely upon others when needed.
Blessing for all on this board.