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My main issue is Fatigue. Extreme at times. Is this symptom what most of you with CLL are experiencing? And how do you deal with it?

March 8, 2025
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Answer Summary

Members shared their experiences with overwhelming fatigue in early-stage CLL, describing how exhaustion often doesn't match their lab numbers... Read more

Members shared their experiences with overwhelming fatigue in early-stage CLL, describing how exhaustion often doesn't match their lab numbers and can persist even during watch and wait, with many sleeping 10 to 12 hours and still needing afternoon naps. Several members offered practical strategies, including ruling out other causes like anemia, B12 or vitamin D deficiency, and sleep apnea, trying medications like Adderall to bring energy levels closer to normal, and pursuing symptom-based treatment rather than waiting for numbers alone to worsen. A recurring theme was the importance of self-advocacy, listening to your body, communicating openly with your medical team, and accepting the new normal while staying grateful for each day.

A MyLeukemiaTeam Member

John,
Do you feel okay? Will you begin treatment? I am also in watch and wait. The fatigue is ovewhelming sometimes. The difficulty is my labs don't match how I feel. I have secondary issues caused by CLL. I have to see the gastroenterologist to see if I have developed colon cancer. My OBGYN is also treating me for some weird issue and said cancer may be the under lying issue, but she can't tell until they treat the acute issue. I think the CLL weakends the immune system and I believe this leaves us venerable to other health issues and secondary cancers.
It is so weird when your leukemia is not bad enough to treat but you don't feel good either. 😕

March 8, 2025
A MyLeukemiaTeam Member

I hate the watch and wait period of time…my provider stated that I was stage zero and would not be put on medication except for the fact that they had just surgically pulled a golf ball size lymph node out of my armpit and so I was put on ibrutinib in 2021. Most recently 2025 after a surgical procedures (see my profile…the April surgeries) and migraine plus CLL flair (palpable nodule on the back of my neck)after 16 days of being off of ibrutinib (being off of medication for 2 surgeries instead of 1 and 14 days) and then going back on ibrutinib and within 24 hours my lymph nodes have settled down and shrank back. So my advice is listen to your body and make hemotology/oncology nurses and practitioners your first call with symptoms.

April 27, 2025
A MyLeukemiaTeam Member

Thanks, answers are what I'd like to have after the watch & wait passed .I was given Hydroxyurea to lower my white blood count however It doesn't help with the pain that I experience 24 hrs day and nothing helps except Quell which stimulates the knee pain and it seems to help with pain as well as the neuropathy which has now also appeared. I have to remember one day at a time. I have my daily conversation with "God" which helps me keep my faith as well as my sanity .

March 13, 2025
A MyLeukemiaTeam Member

I read about your health issues and I am truly amazed? I am 73 and I have known about my leukemia for 3 years? I think I hit stage 1 with 75,000 WBC. I requested medication and I am at 6,900 WBC. I am busy in the morning but by noon I want to relax? I noticed when I visit the gym after 10 minutes of moving weighs my breathing increases when I move weighs with my arms but not when I use my legs. My whole life I had been healthy and since I retired visiting the gym 3 times a week and doing a few hours of work at home. My first doctor practiced the watch & wait which meant during my 5 minute visits I learned nothing but "don't worry?" I wanted answers so I could fight this cancer? My new medical team uses "share & care?" and they provide answers and are interested in my health and welfare. I hope you can get answers to find a solution to your health issues so you can have a happy and healthy future.

March 10, 2025
A MyLeukemiaTeam Member

Soultime12 has a good point. I wish we ould get rid of the fatigue but also like Soultime12 said, it could be other issues too.

March 9, 2025

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