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DiscussionI've had CML for 20 years and want to encourage others
Blood Cancers & Disorders | Last Active: Oct 22 10:55am | Replies (100)Comment receiving replies
Replies to "Hi Lori. My oncologist told me that I have CMML but that the board at the..."
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?