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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.
September 11, 2025
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Answer Summary

Members shared diverse experiences with blood work frequency during the watch and wait phase for leukemia, with most reporting appointments... Read more

Members shared diverse experiences with blood work frequency during the watch and wait phase for leukemia, with most reporting appointments every three to six months depending on their individual numbers and symptoms, though some mentioned annual visits feeling too infrequent and causing unnecessary stress. Several members described living with CLL or other leukemias for many years before needing treatment, with key indicators for progression including rising white blood cell counts, enlarged lymph nodes or spleen, severe fatigue, and low platelets. A recurring theme was the highly individualized nature of leukemia progression and the importance of self-advocacy, with many members encouraging proactive communication with doctors about testing frequency and emphasizing living life fully during the watch and wait period.

A MyLeukemiaTeam Member

It's ironic and funny... after being on 'wait and watch for 10 years, and having gone through treatments finally in 2022 and in now in remission since 2024, im back on 'wait and watch' for if I come out of remission. Go figure. But I'm enjoying being in remission.

September 15, 2025
A MyLeukemiaTeam Member

I agree...my oncologist hematologist thinks blood work and a visit once a year is enough. My GP orders blood work at the 6 month mark ( I asked her to order it☺️). A year to wait to see what my numbers are is stressful.

September 19, 2025
A MyLeukemiaTeam Member

I get blood taken/analyzed every 3 to 6 months.

September 14, 2025
A MyLeukemiaTeam Member

I have been on a 3-month cycle ever since my diagnoses 4 years ago, at which time I was told that I had already been living with it for 5 years so, now I am at 9 years and counting. Just "Watch & Wait" every 3-months.
Numbers re at 42k and my biggest symptom is tiredness, but I am 62 years young, working a very physical job full-time and maintaining almost an acre of land.
God has been good to me by keeping me as healthy as I am considering what I am dealing with.

September 12, 2025
A MyLeukemiaTeam Member

Well, that question is not always simple to answer. CLL in particular--the most often watch and wait leukemia--runs a varied course depending upon among other things bone marrow results, chromosomal deletions and such, which point towards how progressive the leukemia may turn out to be.One can go a very long time watching and waiting, but while you are waiting I would live life to the fullest before the wait is over. In case its not been shared with you by your doctor, hepatosplenomegaly (liver and spleen enlargement) progressively higher white blood cell counts, anemia or thrombocytopenia-- severe weight loss, chronic infections..all may be indicators that you are inching out of the watch and wait phase. Valerie I wouldn't get too overly worried at this point. Take proper precautions advised by your oncologist, eat well, keep active--you know the stuff we tell everyone for everything--take a flu shot if not allergic and strongly think about having whatever other vaccinations your oncologist suggests (sorry FDA--this group needs extra protection). To get back to your initial question, the varied leukemias and stages make any comparison with others difficult to do.

September 11, 2025 (edited)

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