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About MyLeukemiaTeam
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 almost 2 years 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 over 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 almost 2 years ago
A MyLeukemiaTeam Member said:

I was diagnosed with CLL 9 years ago. I have never needed treatment. I don't know what stage (maybe 2 now). I do have swollen spleen, liver & lymph nodes but I feel good & my blood work doesn't seem to worry doctors. At one point, I was slightly anemic but that improved to the low end of average. I thought CLL was different on an individual basis. I feel better when I eat well, get plenty of sleep & exercise, don't over exert & rest when I'm tired. I'm 70-yrs-old & still ride horses, travel & have an active life style. In my case, the biggest effect has been in the area of immune deficiency. I was hospitalized for pneumonia & a food bacteria infection because I don't make a lot of antibodies. I stayed home a lot during Covid because I made few antibodies with the vaccine. I mask in crowds...I was lucky to get the Evusheld antibodies & feel safer. I'm working to stay well.

posted about 2 months ago
A MyLeukemiaTeam Member said:

I was diagnosed 7 years ago. Went on Imbruvica 420 mg. after 6 weeks of testing. Just stopped the medication 3 months ago. I'm supposedly in remission. I'll keep everyone up to date. Feeling pretty good. Not comfortable off of the medication but will follow doctors orders and have check ups routinely.

posted 2 months ago
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