How long can I live with CMML without treatment?

Hi Kenneth Can I ask your age; as well as how your platelet count is?

What are your blasts %

I have my bone marrow test, done two years ago.

I have polycythemia which can progress to CML. Anyone out there with this condition?

Joanie, I'm in chronic stage. I haven't gone into acute or blast phase yet. Not sure what you meant by blast %.

My blasts are at 6% . They are immature red blood cells that are in bone marrow and not in blood stream. When they reach 20% that means that the CMML can progress to AML , which is worse & more difficult to treat. My hematologist does blood smears to check the % of blasts.

Just diagnosed with cmml-2, no real symptoms yet, can't find a support group, how long can I watch and wait? Where can I find any case studies that show someone who has gone thru the tx of chemo, successful bone marrow transplant, and is living a relatively healthy life? Thanks

How do you feel? Do you have any symptoms?

I feel fine, perhaps a bit tired at times. Blasts at 15% which led to the diagnosis of cmml-2. Really was hoping to find info about success rate of chemo plus bone marrow transplant leading to decent quality of life

I was told that I have a 60% chance of not making it from bone marrow transplant at my age of 73. And a50% chance of it coming back within a year. For me, those are not good odds. Plus I’d be hospitalized for 5 weeks and then have to go into a Hope House run by hospital for another 2 months. I’d need a 24/7 caregiver and I would have to pay for one bc I don’t have anyone who could do it for me. So, I’m choosing to use naturopathic supplements as well as prescription medication ( Doptelet) to keep my platelets from Dropping too low. He may give me injections to stimulate RBC if my RBC stay under 10.

Yes mine was 20% chance of not making it after transplant. Hospital plus Hope Center would total 3 months. 1 year recovery with care from Astera whom my doc said is a really horrible year. They all said after transplant I will never feel better than before. It is supposed to only help me live longer with no definitive timeline. Avoiding Graft vs host disease and infection is biggest hurdle after transplant. When I go into acute or blast phase we'll make decision of doing transplant or not.

This dialogue really helps, thanks! I've never been sick before and my family thinks I should do everything possible to alive al long as possible. The LLS has been super helpful with info and advice...beyond anything my Kaiser oncologist has offered...my watch and wait period is very narrow..still...I have no symptoms right now...between a rock and a hard place

Kenneth: Do you know what mutations you have? I have ASXL1 & RUNX ( bad combo)

Platelet’s are at 15, going for blood transfusion today. My blasts around 14 I am 68 old.

Wednesday I had blood transfusion for palettes. Going Friday for blood work to see if palettes improve. If not Saturday would be another round of palettes.

My cmml has now gone to blast AML. Admitted to hospital last week. Receiving daily hemoglobin, red platelets, and white platelets. If we do zero treatments, I have 2 to 3 months. Working with cancer team to find where I am leaking blood, which if we can't find or stop, we cannot try chemo therapy.

Oh Chris I’m so sorry 🙏🏼for you I just saw Dr Drew Pinsky on Tv yesterday say he saved a man’s life who had AML with certain medications but he didn’t say what meds When were you first diagnosed with leukemia?

Wow bo treatment i got diagnosed last July with the same thing

The bo e marrow transplant is not a bad thing I'm 120 day out off the hospital and doing good hope your doing well

Mike, how old are you? Do u know what mutations u had?

Living with CMML can bring many questions about the future, and it's completely understandable to wonder about timelines and prognosis. The progression of CMML varies significantly from person to person, and factors like blood counts, genetic markers, and overall health all play important roles that only your medical team can properly evaluate. Many people in this community have found it helpful to have open conversations with their doctors about their specific situation and what monitoring approach works best for them.

My blast are 15, doing chemo to maybe bring them down. I meet with bone marrow transplant team November 24. I am 68, but the time I could get it done I will be 69. Little nervous about it, if my body doesn’t except it. It will not be good. Cheers everyone, feel better.

Kenneth: Did u get a match for SCT?

Joanie, no match until I see the bone marrow team. Also my oncologist said I have to dentist and heart doctor before transplant. I find out more after meeting with bone marrow team in November.

Kenneth: I met with bone marrow team & there were many things I had to do once I got a match. Yes, dental, EKG, mammogram, have to have kidneys and liver checked and see a pulmonary specialist. But since my stats are so high ( 60-70% chance of not making it & 50% chance of return within a year bc of my age ( will be 74 in March) and 2 really bad mutations, I have to just hope and pray chemo can prolong my life.