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A MyLeukemiaTeam Member asked a question 💭
Decatur, GA

I am in watch and wait mode for CLL after being diagnosed a couple of years ago. Pain and fatigue are what originally sent me to the doctor before diagnosis. Has anyone else experienced worsening pain and extreme fatigue before treatment?

May 6, 2019 (edited)
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Answer Summary

Members responding to a question about extreme fatigue before CLL treatment overwhelmingly confirmed that fatigue, bone pain, night sweats,... Read more

Members responding to a question about extreme fatigue before CLL treatment overwhelmingly confirmed that fatigue, bone pain, night sweats, and swollen lymph nodes are common experiences, often the very symptoms that led to their diagnosis. Several members shared that watch and wait can last years, and many found relief after starting targeted therapies like Calquence, Brukinsa, or Imbruvica, with some noting energy levels improved significantly. A recurring theme was feeling dismissed by doctors who linked symptoms to other causes, with many encouraging others to advocate for themselves, seek second opinions, and lean on community support.

A MyLeukemiaTeam Member

Yes...I also have fatigue and bone pain and I am in watch and wait. I also have CLL. As a wise CLL person told me, CLL is different for each of us. Some od us have n symptoms some have few symptoms and some many symptoms. The blood work does not tell the entire story.
I bruise very easy also, but my blood work does not support my symptoms.
The best part of CLL is have a wonderful, support network of people who understand and care.
We are in all the stages from watch and wait to end of life, but all of us are fighters!!!
Find the good in all you are going through, it makes it tolerable and sometimes even funny 😁.
Best of luck!

May 2, 2023
A MyLeukemiaTeam Member

I have always had severe fatigue. No different today. Very hard to function so I swim for enjoyment and exercise. I have declined treatment to the disgruntled doctors but after all, there is no cure. Why add more misery to misery?

May 5, 2022
A MyLeukemiaTeam Member

I have lately been experiencing extreme fatigue, if I let my self I would stay in bed all day. Approximately two years before diagnosis I would get very tired mid afternoon, I could not understand why.

February 4, 2023
A MyLeukemiaTeam Member

Yes, chronic fatigue years leading up to diagnosis, fatigue before and after each treatment. Gets significantly worse as it comes time for treatment. You are not alone!

July 19
A MyLeukemiaTeam Member

Kearie- I am 79- about 10 years in to CLL/SLL diagnosis. I started on Brukinsa about 13 months ago due to serious fatigue, low iron, swollen lymph nodes and spleen. The Brukinsa took care of that rather quickly and I have basically felt well since I started. I am currently pretty low energy, but I have been working on an important project for the past 6 months and have to back off. Fortunately, it is off an running so I can do just that. Sorry about pain in your spine. I have had none of htat. Night sweats were bad for a w hile. now occasional. wishing you a simple journey. It really helps to trust your medical team.. Be well... or at least as well as possible. I find I just have to be patient with myself from time to time....

November 10, 2025

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