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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
August 30, 2025
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Answer Summary

Members rallied around someone confused about why their oncologist couldn't explain the presence of leukemia cells despite otherwise normal... Read more

Members rallied around someone confused about why their oncologist couldn't explain the presence of leukemia cells despite otherwise normal bloodwork, with many sharing that CML never fully disappears but rather goes into remission where cells remain detectable yet controlled by medication. Several members explained the importance of the BCR/ABL or PCR test, which measures the percentage of cancerous white blood cells, and shared their own experiences ranging from undetectable levels to stable low percentages after years of treatment, emphasizing that having some detectable cells while on medication can be completely normal. A recurring theme was concern about the oncologist's communication style and lack of clear explanation, with many members strongly encouraging a second opinion, asking more specific questions during appointments, and considering a hematologist who specializes in blood cancers alongside or instead of a general oncologist.

A MyLeukemiaTeam Member

Mary, you should have your blood work results which should include the BCR/ABL (look this up on internet for explanation). Your bloodwork MAY all look normal, but your BCR/ABL shows 'leukemia cells". For CML patients, this can be NORMAL (all looks good but still have positive BCR/ABL). Your Oncologist may not be articulating this. Nobody can say why anyone 'gets' leukemia or why your treatment is working faster/slower/better/worse than someone Elses. I am on my 1st year and all of my blood counts (reb/white blood cells, platelets, etc.) all are in the normal range but yet my BCR/ABL (leukemia cells) is still positive AND my blood sugar (A1c) is high (I am also a diabetic). Hope this helps but, this is normal for many with CML (except the sugar :)

September 2, 2025
A MyLeukemiaTeam Member

Mary, even with treatment leukemia never is cured. It just goes into a type of remission where the leukemia cells are barely detectable. But they always will be there. I am unsure why your oncologist doesn’t understand what is occurring.

September 2, 2025
A MyLeukemiaTeam Member

Hi Mary hope you are well and please don’t panic. What were the numbers on your last BCR/ABL test and how long have you had CML. I am 6 years in now and still have .013% cancerous cells, slightly higher than remission levels but that was my best reading yet in June 2025. It has been a long road but readings are stable so if you are in same boat just have to go with the flow and hope for continued improvement

August 30, 2025
A MyLeukemiaTeam Member

I don’t understand why he don’t know either ! Is he a leukemia specialist ? I would get a second opinion hope your feeling better soon 🤗

September 2, 2025
A MyLeukemiaTeam Member

I think I would possibly work with a Hematologist in conjunction with your Oncologist. Each has their own area of expertise. I am being treated for AML by a Hematologist/oncologist so I get the better of both specialties!
My Diagnosis was March 2024. My most recent MRD blood test (measurable residual disease) did not detect my mutations (FLT3 or NPM1) however my numbers never get in the normal range. The MRD test isn’t yet sensitive enough to detect the mutations and FLT3 mutation can “hide” in plain sight. So for now my Onc/Hem calls my remission DEEP remission. I will continue on maintenance treatment (chemo Dacogen and Venclexta 1/2) every 28-35 days for the foreseeable future. In the meantime I go in for weekly CBC blood draws. Prayers go out to you that you get answers to your questions🙏🏼

September 16, 2025

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