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@loribmt

Good morning, @jacklyn. From my understanding, specific acquired mutations can influence the direction of CMML and the treatment required. One set of mutations may lean more to dysplastic CMML, which is slower to develop. Where another subset of mutations may lead to a more proliferative form of CMML which could progress to AML at some point. Your doctor will have used cytogenetic testing to determine which mutations are involved so they can offer you the best treatment for your diagnosis.

Often when you’re being seen at a larger clinic, there may be a team of doctors who review cases together as in, “many heads are better than one”. So if the board at your hosptial has determined that your CMML could be the type to drift into the AML territory, they’re seeking to prevent that from happening and that’s reflected in the treatment plan that’s being set in place for you.

We do have several members in the forum who also have CMML such as, @cblowers1 @tbone45 @beewoman70 who may be able to share their experiences with you. Also, @joesim started this discussion a couple years ago:
Looking for recommendations of doctors with expertise in CMML
https://connect.mayoclinic.org/discussion/cmml-2nd-opinion-docs/

I know it’s so scary getting a new diagnosis like this and not knowing a thing about it! But it sounds to me like you have a great doctor and a team behind her. That’s so important for feeling confident about your care. You have another appt with your doctor Tuesday so that gives you the weekend to try out the hydroxy. This also gives you time to make a list of any questions you might have for your doctor. Don’t hesitate to ask those questions or express your concerns. My doctor and team at Mayo always encouraged me to let them ‘take on any stress or worry’ so that I didn’t have to. So try to relax this weekend and talk to your doctor Tuesday.

How are you feeling today after your first rounds of hydroxy?

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Replies to "Good morning, @jacklyn. From my understanding, specific acquired mutations can influence the direction of CMML and..."

Thank you again Lori. I am doing fine on the hydroxy 1000mg in the morning. I will see what happens when I have to raise it another 1000mg. Maybe Sherrill agree to twice a day instead of taking 4 in the morning. What is also interesting Lori is I haven’t had to take Tylenol. I was taking 1000mg twice a day.
I was scared when they talked about chemo because I did accelerated chemo and radiation 17 yrs ago. For breast cancer. I was very lucky I was able to work through it all. I read if you have done chemo in the past it might not be as effective if you have to do it again. Also I read as a 76 yr old with CMML life span is 20-30 months. Yikes. That caught my attention. I think I better stop with google. I have my faith and decided to turn it all over to God. I also know that God doesn’t like it if we go back and forth once we ask him to take charge. Trying hard to stay out if his way.