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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.

Who Here Has Cll? What Stage? How Long?

Who Here Has Cll? What Stage? How Long?

Hi I’m Stage 1 of cll and wondering what’s next?

A MyLeukemiaTeam Member said:

W & w began in 2015. Platelets went to 3 in (Phone number can only be seen by the question and answer creators) of Imbruvica started then with little side effects. Very dry skin though. I have heart disease and failure too, plus throw in sleep apnea. Installed an ICD in my chest to run my heart in 2015. Helping others helps me feel better. I get a little fatigued by the end of the day, and often can't fall asleep. But I am ok. With virtual school, I am helping to educate my 6 year-old grandson. I love this site for support.

posted over 1 year ago
A MyLeukemiaTeam Member said:

I have CLL sand was in the watch and wait stage for 6 years now. This year it started climbing to 137,000 from starting point in 2014 at 12,000 so treatment may be next. Usually CLL progresses slowly! I do not know what stage I’m in! Guess I should ask! Blessings and prayers for you!

posted about 1 year ago
A MyLeukemiaTeam Member said:

Hopefully nothing for many years but blood work every few months and check-ups!
I went 13 years before having problems this year mostly due to my secondary condition called Autoimmune Hemolytic Anemia. My hemoglobin number got real low while they were working on lowering my white count.

edited, originally posted over 1 year ago
A MyLeukemiaTeam Member said:

I got diagnosed three months ago with CLL they said it was slow growing but after bloodwork they found out is more aggressive so I had a bone marrow test and I’m waiting on the results and they started me on it imbruvita five days ago. I’ll get my bone marrow results on the 20th

posted over 1 year ago
A MyLeukemiaTeam Member said:

I'm in stage 1 and have been since my diagnosis in 2010. I've done 2 rounds of treatment. Progress varies from person to person, and when to treat is a decision with your oncologist (& in my case in coordinating with my naturopath). So hard to answer the what's next other than wait and see from a western medicine perspective. I involved a naturopath because my fatigue was impacting my quality of life, and I wanted to find a way to slow the progression of the abnormal b- lymphocytes.
Good luck and stay safe

posted 3 days ago
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