Living with CMML: Seeking Experiences and Alternatives to Stem Cell Transplant

Hey Joanie, I don't have any experience with either CMML or stem cell transplant. I'm 76 with stage 3b non-small cell (NSCLC) in the right upper lobe of my lung. I know that any cancer is an arduous journey. I think it is a very personal journey and we are the ones who should be in charge of the journey. I wish you strength to help you find peace with the decisions you make through this very difficult road ahead of you. I'm putting you in my thoughts with positive energy for whichever route you choose! Take good care, Garey

Thank you Garey

Hi Joanie. I'm Chris and I was diagnosed with CMML in May 2024. I found out through my routine 3 month bloodwork. I began with Astera Cancer care who performed the first bone marrow aspiration to confirm the leukemia with 3 mutations. I then had my first appt. with MSK in New York in July 2024. At that point they recommended I should have a blood stem cell transplant with the thought of the analogy that if you know your car is going to break down it is better to fix it before it gets worse. But they wanted to wait until covid and flu season passes first. I had a second aspiration with MSK in Basking Ridge N.J. in October. I met with MSK NY again in November and January 2025. At my appointment in January they said I should prepare for my next appointment in 2 months to begin the preparation process to perform the transplant. I followed up again in March and then in June where they did a 180degree turn around and said that they feel it is better to wait until my bloodwork gets really bad. He also said I won't feel any better than yesterday but better than tomorrow. He suggested I wait until I have had enough of feeling worse and than call to start the transplant process. That really confused us as to why they (I have a team of 12 doctors with them that consult each case) changed their mind. I followed up with RWJ Steeplechase Cancer Center in Somerville NJ who agreed it is best to wait until my bloodwork goes into acute or blast to then consider a transplant. I have had numerous discussions with Astera (they monitor the aftercare once I am released from the 3 month post hospital stay) and they discussed how difficult the first year would be. The biggest concerns is to avoid graft vs. host disease and risk of infections. So now we are in a waiting period, and know we will have to later choose whether or not to go ahead with transplant or not. I know this is a little long winded, but it is what it is. We just keep a positive mental attitude. Chris

Chris Thanks so very much for sharing. Can I ask what your age is? My hematologist basically just has me on Dopletet to keep platelets up. He feels that I shouldn’t do anything until my blasts go up or hemoglobin & platelets get bad. My hemoglobin has increased from 9.7 to 10.7 since I started on all the supplements from the naturopathic oncologist. Joanie

62. There is no plan for any medications. A friend of ours had cmml also. He is in his 80's. They worked for a year to get platelets and his blood straightened out. They finally did and MSK NY told him 2 days after my appt. that he should wait also. Frustrating.

Chris: Did MSK take your blood for HLA typing to find a donor? They set me up with appointment but I canceled it

Why do platelets decrease? Medication’s. Radiation. Did you have any of these?

Yes, then MSK reached out to 3 of my brothers to find a donor match. They won't tell me who is a match until I go in for transplant. They also have a large donor pool. Tim, they have not put me on any medication or other therapies. We watch my bloodwork every 2-3 months to see if or when I enter acute or blast phase. All of the blood numbers fluctuate daily. I've even been told if they take blood from both arms they can have different numbers at the same time.

Tim, leukemia causes disruption of blood cells and platelets. I take medication to increase my production of platelets.

Chris Mueller What % of blasts do you have?

Joanie, my Dad had cmml. It's a terrible disease. He was going to the hospital every day to have platelet infusions. I don't know when you were diagnosed, but Dad was about the same age as you are, and had a few years after his diagnosis till it got really bad. He played golf up to the end. I hope the clinical trials will turn out positive for you. Cmml is terrible!

🙏🙏🙏🙏

Alexis, I was diagnosed in Dec 2024 and my platelets and hemoglobin are holding steady. I have not had to have platelet infusions since my platelets have increased from 32 last summer to 102 which I attribute it to the Dopletet medication and papaya extract and dandelion root extract. How long did ur Dad have CMML & how long from when he was diagnosed did he get infusions ?

5 years.

That’s great news to me. Internet says 20-40 months

Try not to read the internet!! Stay positive and fight like hell. My friend has B cell lymphoma and they told him 10 years and it’s been 12 years. 🙏🙏

With cmml has anyone experienced lower intestine issues? Everything has been looked at and ruled out.

About every 3-4 weeks I get a severe pain in my lower left abdomen. My hematologist said it was not related to CMML & was probably diverticulitis.

Yes, that's why it took 2 years to rule everything out. Originally msk said my stomach pains was the cancer eating away at me. Then 3 cancer centers assume no, but they don't want to consider it as a main symptom of cmml. So I think it is related. Upper left abdomen would be spleen enlarging, lower in the back is kidney. I don't feel like eating most of time as I can get stomach pains before during and after I eat.

Oh yeah, my spleen is definitely enlarged & I get pain from that too. I eat less & have lost 22 lbs in 14 months but to be honest I was greatly overweight

What is the difference of CMML and CML?

Different mutations. CML has better outcomes than CMML

This sounds like such a challenging situation with difficult decisions to weigh. Many people in the community have shared experiences with CMML and stem cell transplants, and connecting with others who understand this rare diagnosis can provide valuable perspective during this time. The uncertainty around treatment options and clinical trials is something many here can relate to, and sharing experiences often helps people feel less alone in navigating these complex medical decisions.