Diagnosed with a myeloid neoplasm (chronic myelomonocytic leukemia)

Posted by judithiam @judithiam, May 8 4:37pm

I have been diagnosed with myeloid neoplasm, favoring chronic myelomonocytic leukemia with marked eosinophilia, grade 1, myeloproliferative subtype. What is this? My bloodwork was off and a bone marrow was completed. This is wat they are leaning toward as my disease presently. Presently, I feel healthy.

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Lori, Volunteer Mentor | @loribmt | Jun 5 11:28am

In reply to @carolgk "@loribmt Are you my good luck charm? : ) Yesterday late afternoon, I was notified by..." + (show)

@carolgk Ohh I’d love to be someone’s good luck charm! 🍀
I mean, I am a chimera. LOL. We can have mystical powers! You’ll be one too after your transplant. (Having 2 sets of DNA!)
I’m so happy you’ve gotten clearance with the donor and a target date! All the anticipation and then the abrupt letdown is stressful. So, we’ll be optimistic that this time IS the charm!
I have a ton of first hand information, plus informational resources, along with fellow BMT survivors here. Are there any questions or concerns I can help you with?

carolgk | @carolgk | Jun 5 12:24pm

In reply to @loribmt "@carolgk Ohh I’d love to be someone’s good luck charm! 🍀 I mean, I am a..." + (show)

@loribmt Lori, LOVE your chimera funny.
I spent quite a lot of time over the past months reading the many sources and asking questions of the BMT Team regarding the BMT process. Patient experiences are all over the place but feel like I am aware of most possibilities and probabilities. I am pretty much set to go in that respect.
When the confirmation arrives I will secure lodging. That could be a problem given summer vacation timing in a beach town. I will deal with it as soon as I can.

As for checking into the hospital. Any advise there?
Over the next couple of days I will make sure the last few items needed are covered.

I appreciate your offer of help. Can your send your packing list ?

susanmarie52 | @susanmarie52 | Jun 6 8:44am

I have recently been diagnosed with CMMl-1. My blasts are low and I feel fine for now. I am praying daily.

Lori, Volunteer Mentor | @loribmt | Jun 6 8:50am

In reply to @carolgk "@loribmt Lori, LOVE your chimera funny. I spent quite a lot of time over the past..." + (show)

Hi @carolgk I’m on the road today with no access to my computer. “Mouse type” on my phone. LOL. So I’ll post the packing list tonight or catch up with you tomorrow! Hugs.

carolgk | @carolgk | Jun 6 9:32am

In reply to @loribmt "Hi @carolgk I’m on the road today with no access to my computer. “Mouse type” on..." + (show)

@loribmt No worries, Lori, I appreciate it.

Lori, Volunteer Mentor | @loribmt | Jun 6 5:22pm

In reply to @susanmarie52 "I have recently been diagnosed with CMMl-1. My blasts are low and I feel fine for..." + (show)

Welcome to Connect, @susanmarie52 Being newly diagnosed with CMML-1. (Chronic myelomonocytic leukemia I’m sure your head is spinning with a zillion questions.

Though the letters are the similar, CMML is not the same disease as CML. They are considered chronic forms of leukemia but with different characteristics.
I know, it can be confusing! The initial replies in this particular discussion are regarding CML.
However, we have several other members in the forum who have experience with CMML either personally or through a loved one. Let me introduce you to a just few of the members off the top of my head. @carolgk @rogelling @ismatjahan007 @lmoser325 @sme225

There are numerous discussions about CMML and I wasn’t sure which one to recommend for you. But here the link to a quick search in Connect for CMML members so you can check out the conversations that are interesting for you: https://connect.mayoclinic.org/search/

What has your doctor told you about your CMML? You mentioned you’re in stage 1 with your current diagnosis. Will there be any treatments offered at this time or are you in active surveillance…just keeping an eye on things with labs every few months or so?

Lori, Volunteer Mentor | @loribmt | Jun 6 6:00pm

In reply to @carolgk "@loribmt Lori, LOVE your chimera funny. I spent quite a lot of time over the past..." + (show)

@carolgk This is a reply I typed to someone a while ago. It’s loaded with a lot of info. Some won’t necessarily be germain to you with not being in Rochester and you already found lodging in Jacksonville. But the lists will be helpful and the ‘caregivers’ guide from Mayo and Memorial Sloan Kettering are really comprehensive.
https://connect.mayoclinic.org/comment/1059221/

hsminc | @hsminc | Jun 6 9:33pm

CHRONIC myelomonocytic leukemia does NOT sound right to me. This very specific type of myeloid leukemia is rare and I have never known this version to be CHRONIC??
Please see a leukemia expert immediately - preferably on in academic practice. Good luck!

hsminc | @hsminc | Jun 6 9:40pm

Sorry I mis spoke. I had never heard of chronic myelomonocytic leukemia but I cousin and two neighbors have had the acute versions.
I was right about it being rare with a different presentation than the “more common” CML

carolgk | @carolgk | Jun 7 6:30am

In reply to @loribmt "@carolgk This is a reply I typed to someone a while ago. It’s loaded with a..." + (show)

@loribmt Thanks Lori, you are always so helpful. Great information!

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