I was diagnosed with stage A CLL in July 2022. At present on W&W. Which I am obviously very grateful for. The only problem is the tiredness. I’m told by the specialist caused my HB is 134. There is no reason why I should be tired.
I this a general side effect of CLL that anyone else as had
Thanking you all in advance
Welcome to this wonderful forum for people with CLL or supporting loved ones. It’s never easy getting a diagnosis of cancer, even a “good” one. But here we are.
As a rule of thumb, I try not to automatically attribute symptoms to my CLL. Fatigue is a symptom of CLL and people do experience it at different times over the course of their disease. The fatigue CLL specialists are interested in seems to be a profound tiredness, especially after exertion.
I had fatigue, for example, due to back pain. Once I got that sorted, I slept better and had more energy.
There are many aspects of our physical, emotional and mental health that may contribute to tiredness. Certainly feeling a bit distressed over a new diagnosis may be contributing and would not be unusual.
Patti
I don't experience any unusual tiredness with my CLL. I am on O&V treatment. I wouldn't assume it's the CLL. Other things can also cause fatigue. Something as simple as not drinking enough water could cause fatigue.
We’re all different, I know. But I have CLL and I do attribute my frequent intense tiredness to that.
You may wish to do a complete fatigue work up with your GP. Such things as vitamin levels of B12 and D. A full thyroid panel and to make sure that your levels are at the optimum levels, not just somewhere within normal limits. And ferritin levels should also be checked. And also to make sure all systems are functioning well.
Make sure your diet is excellent, with lots of good protein sources, whole grains and fresh fruit and vegetables if possible.
Doing some exercise if you are able to do so may help with your fatigue levels.
Make sure you are sleeping well. Following a good sleep hygiene program may help you as well.
Fatigue from this disease does plague some people and once it interferes with daily living activities as per recognized scales, treatment may be considered.
I hope that these suggestions may help.
Sandy Beaches
How's your diet? Do you pay particular attention to nutrient intake?
Hi Wilcop,
As someone who suffered quite severe fatigue before I started treatment for my CLL, despite no apparent explanation for it (ie my blood counts didn't suggest any obvious reason), I sympathise with anyone puzzled because they feel so tired during their watch and wait period.
A CLL Society study of over 1,100 CLL patients "showed that more than half experienced fatigue during the “watch and wait” period".
Just as CLL is heterogeneous, the severity of fatigue that we might experience can vary enormously from patient to patient. Nevertheless, it is always important to consider any explanations other than our CLL if we are experiencing significant fatigue.
"A good work-up should check for significant anemia. Mild anemia is usually well tolerated and doesn’t cause significant fatigue. Blood chemistries should be looked at to rule out thyroid, liver, kidney and other diseases.
Anxiety (which is common in CLL), chronic pain, occult infections, stress, depression, and other chronic illnesses can contribute to fatigue. Your Health Care Providers (HCP) can conduct simple screening tests. Treatment can often be effective once a specific diagnosis has been made."
Counter-intuitively, exercise can often help with CLL fatigue.
If all other explanations have been eliminated, it is important to "recognize how common fatigue is and realize that there are real reasons for it. You are not just being lazy. Don’t blame yourself."
If, after exploring all other possible explanations, your fatigue is severely impacting your quality of life, it might be time to discuss treatment with your specialist. "If a large amount of chronic lymphocytic leukemia or high “tumor burden” is resulting in overwhelming fatigue, treating the CLL is a real option to be considered in consultation with your treatment team."
cllsociety.org/cll-sll-pati...
The Leukemia and Lymphoma Society also has an excellent resource about cancer-related fatigue: lls.org/treatment/managing-...
As an indication of how many people with CLL experience some level of fatigue, a search for posts on the topic on this site brings up over 1500 results: healthunlocked.com/cllsuppo...
CLLerinOz
Yes, I had fatigue when I was on w & w. I was tired every day until I started treatment. After a few weeks of ibrutinib I improved a lot and got back to a more normal life. I hope you find a solution for your fatigue. I wish you well.
I was diagnosed 4 years ago and exhaustion was the only symptom for a long time (started as WBC was increasing fairly quickly). The 12 months leading up to starting treatment (in October’22) were the worst and at that point my spleen was getting really big too. That said, work had been full-on and stress v high for some years, so I suspect the exhaustion and the CLL was my body’s way of trying to tell me I had to change something!
I’ve read other peoples posts on this forum who’ve spoken of exhaustion as a major symptom, so there’s certainly a connection but other factors like stress / nutrition/ vitamin balance seem to play a part too.
Good luck and be kind to yourself.
I feel tired most of the time but not sure if it is a combination of CLL, age and the drug I am on Calquence. Try not to think about it and once you are up and about you’ll forget about it. Or take a few afternoon naps and be thankful you are on the least harmful leukaemia
I've been on W&W for 2 years. If it weren't for my diagnosis, I wouldn't even know I have CLL. I feel fine and full of energy. I run and work out and have not lost any strength or stamina.
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