Diagnosed with a myeloid neoplasm (chronic myelomonocytic leukemia)

I'm so sorry, judithiam. You must feel like you're alone in the dark.

Soon you'll hear from others sharing their experiences, helping you find the light.

Hi @judithiam I’m going to add my welcome along with @janemc. It can feel pretty lonely when you receive a diagnosis out of the blue. I can related…I was blown away when I was diagnosied AML, another form of leukemia.
CML, Chronic Myeloid Leukemia is generally a slowly progressive blood cancer/condition. A specific mutated gene can bypass the ‘on/off’ switch in the body for cell production allowing too many of one type of cell to keep replicating. This is a more common form of leukemia so there have been many advancements in treatments over the years which allow patients to lead a more normal, healthy life.

Since this is new to you, I’ll post a few links to information from credible sources for you:

-Mayo Clinic:https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417

-Cancer.org
https://www.cancer.org/cancer/types/chronic-myeloid-leukemia/about/what-is-cml.html
-Cleveland Clinic https://my.clevelandclinic.org/health/diseases/21845-chronic-myelogenous-leukemia-cml

There are also several members in Connect who also have been diagnosied with CML. One of many conversations is this one posted by @suzie71 several years ago. She’s joined by other members.
https://connect.mayoclinic.org/discussion/chronic-myelogenous-leukemia-cml/
More discussions can be found by typing in CML in the upper search bar. Remember, everyone has their own unique set of circumstances so the experiences are not all identical. But it can be so helpful to speak with others who have a common bond.

Has there been a discussion about treatment options for you?

Thank you so much for your input. I look forward to exploring the informative sites you suggest. Stay Blessed.

@judithiam, are you currently undergoing further diagnostic testing to confirm the diagnosis? How are you doing?

I am hoping to get a second opinion, and possibly a bone marrow transplant. I have records sent out but still have not heard back. Thank you for asking. I'm doing pretty good according to my scale as to how I physically feel.

@judithiam
Its a shock to hear this diagnosis. Especially given you are feeling pretty good. Getting a second opinion is a good idea. I can relate.

June 2025 I was diagnosed with CMML-1. after a Bone Marrow Biopsy Unlike you, I did not feel well and had many symptoms for almost 2 years at that point. I had "off" bloodwork during that 2 years that were dismissed by multiple physicians.
When confirmed with local Oncologist, I was told I was "wait and watch" with bloodwork every 3 months.
On the second course of bloodwork in December 2025 (and feeling poorly) I was sent to Mayo as my bloodwork had changed. again Mayo Clinic Jacksonville FL met with me, did another Bone Marrow Biopsy.
In January 2026, I was also diagnosed with Myelofibrosis 3+/3 and Oncology sent me to the Bone Marrow Team in Jacksonville. A helpful and kind group of physicians and nurses. I am well cared for and beyond thankful.

My understanding is many people can go for years before CMML -1 becomes a real issue. Not all blood cancers are aggressive. In my case, the CMML cancer blasts are low and have not changed. CMML was the initial diagnosis but not the problem, the Myelofibrosis diagnosis is.

I am now waiting for my Bone Marrow Transplant. It is an extensive and slow process. Many tests and last week my 4th Bone Marrow Biopsy. My BMT was scheduled for June 11th but cancelled last week as the 1st donor could not be "cleared" to donate. The second potential donor was to be contacted last week. It will be a minimum month plus before that journey begins, if I am lucky.

Im fortunate that my symptoms are being treated with Vonjo. With the exception of the intense itching symptoms, I feel so much better, a much smaller spleen allows me to eat normally, fewer episodes of extreme fatigue, far fewer episodes of Bone pain and night sweats. Gradually my bloodwork has improved.

Ask questions about your specific diagnosis!!! If you are being treated at Mayo Clinic, I believe you will find them very responsive and helpful.

I wish you all of the best .

Hi @carolgk Oh gosh, I’m sure you’re disappointed with the first donor for your BMT not being cleared for donation. I bet you had your lodging and everything set for the June 11 and for several months beyond! I hope candidate #2 will be a go and the BMT can take place soon!!
It’s such an antsy time and all the ducks have to get a row before it can take place. Will you please keep me updated with your new date?

Thank you, Lori. I appreciate your response , concern and kind words.

Yes, I was very disappointed for the BMT cancellation. Everything was lined up including lodging and I was ready. I had completed the many body tests and all is well. My visits for Total Body Irradiation. Except for the two cancers and Rheumatoid Arthritis I am in great shape. That is all good to know in any case.

I remind myself that I am in a better place than many. It is unfortunate and frustrating that it took months to determine that the first donor would not be cleared. Hopefully the next donor wont take as long.

It does help that I feel physically better than I have in 2+ years. I cannot overstate how amazing the difference is since the Vonjo took effect.
Given that Vonjo is $28.000. 00 per 30 day supply , I am concerned because I only have 1 month remaining refill on the approval from my healthplan. I realize they may fill again with no troubles. I would also not be at all surprised if they reject it. The waiting is hard enough. I don't want to go backwards.

Given the amount of time it takes for a new donor to be identified and willing, tested etc ? We chose to make the best of it. My husband and I have decided to make a long drive to see kids and grandkids, leaving next week.
Loving on the babies and time with the kids should help with the antsy waiting. We will see lifelong friends as well. The upside eases the situaton. Like it or not , there was a reason this happened. I am going with that.

I was planning to post an update after I heard about the second potential donor. I will be sure to update when I have more to share. I am hoping the BMT occurs in July and as hard as it is, preparing myself it may take longer.

Hi @carolgk The distraction of a nice roadtrip will be just the thing for you and your husband. It’ll be wonderful catching up with friends and ‘loving on the babies’ as you said. I love that phrase. 💕
A little reminder to be cautious around the little ones…they tend to be germ bombs.

I hope the 2nd donor validation goes quickly for you (and them!). At least you’ve already gotten the testing out of the way. I don’t think those have to be repeated. And it’s fantastic that you’ve been so responsive to the Vonjo. Pricey little nuggets, that’s for sure! One of my early meds was around the same price. I kept thinking what I could buy with that $28 grand per month. Haha, ya, ultimately I bought my 2nd life! Worth every penny. ☺️ Joking aside…this medication has gotten you to the point where you will be entering the transplant in great health!

Have a lovely reprieve and enjoy your vacation! Keep me posted with your updates! Hugs.

@loribmt Are you my good luck charm? : )

Yesterday late afternoon, I was notified by the BMT Nurse that Donor #2 is set for donation on June 23, 2026 !!!!!!!!!!!!!!!!!!!! WOW! So happy and relieved.

BMT Nurse is trying to coordinate June 26 for my hospital Admission (not yet confirmed).

Thank you so much , Lori. I appreciate your support. It really does make a difference.