Looking for recommendations of doctors with expertise in CMML

Hi @edb1123 I was wondering how your friend is doing with her CMML diagnosis? Because CMML is considered a chronic form of leukemia it is generally slower to progress than the AML that you and I had. Depending on the status of your friend’s CMML, it may be that 2 months is appropriate for her condition. The doctor will view trends in her blood numbers and monitor for changes that way. If they see any progressive upward or downward movement after subsequent tests they will reassess. Down the road there are treatment options available, the ultimate maybe being a BMT which you’d be able to offer her a lifeline with your experience. How are you doing these days? How are your gvhd issues?

Hi, Lori: I’m happy to say that my friend visited Mayo in mid-June, and they confirmed that she can be monitored every 2 months and no treatment is needed at this time. I hope it never progresses to AML and the need for a transplant. I am doing well, other than some pesky issues I had with my liver enzymes (again) and neuropathy in my feet. Are you attending the transplant picnic? I will be there and hope to meet you in person!

That’s good news for your friend…doesn’t hurt to have that backup confirmation from Mayo! I hope she never progresses to requiring a transplant either but it’s nice to have that option in the background if it comes to that. You and I both know that team well. ☺️

My only remaining issue are the pesky liver enzymes too. I’ll have months where things are fine then a trending creep upwards only to return to normal a few months later. Weird. I can’t blame that on any bad vices! LOL.
I just CELLebrated my 5th re-birth day so at this juncture, my doctor isn’t too concerned because nothing has escalated. But he keeps a wary eye on the numbers. At my last Mayo followup in April my leash got lengthened between blood work to 6 months. That made me feel that my doctor has confidence in the numbers, so that was encouraging.

Oh, now I’m bummed not to be at the picnic this year! My husband and I talked about heading to Rochester for the event but we’re have another obligation that makes the trip a little too compressed on our calendar this year. I’m sorry to miss out on the chance to meet in person. Hopefully in the future!
Nice to hear from you! ☺️

Happy 5th Rebirthday! 🎉🎉 My 4th Rebirthday is July 22nd! Yahoo! Sorry we won’t get to meet at the picnic, but summers are a busy time since they’re so short! Enjoy!