Hello fellow Cllers. I am w and w and a 49 year old male. I have had four infections since diagnosed 16 mo ago. C diff (horrible), pneumonia and 2 sinus infections. Fatigue is my main issue and battle. The fatigue is in my eyes more than anywhere. It feels like 100 lbs is hang from my eyelids. I feel like napping most every day past noon and some days do so at my desk or at home. Mornings are decent and have energy but by noon most days I am wiped out. I work full time mainly on a computer. I especially notice the feeling if I am really active walk 4 miles and stay up late one day (overdue it perhaps?) or play 9 holes of golf riding a cart ( 2 years ago could play 18 holes walking no problem) and would feel tired but would recover the following day. Today, it takes days sometimes a full week to feel like I have most of my strength and energy back. Doc says probably not from cll? Perhaps, however the tiredness came on about when diagnosed and is getting worse yet the CBC wbc 26K has remained climbing slowly but steady. Other number ok so I am grateful. Any advise would be helpful. Thanks for reading and make it a great day.
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I know that my Pracitioner’s have checked my other numbers from IgA, M, G, thyroid, testosterone, B-12, Mag, Vit D, Protein levels, etc, etc, to make sure they are not missing something. My recovery is much slower and viruses linger longer. But nothing has been found. So a little more than a year in, I’ve learned CLL is so individually nuanced, that we must be patient that we will not get the answers we want so early in the course of this cancer. It sure is frustrating. I don’t want this to progress faster but all this vague B cell fatigue talk seems to confound the health care providers. They are sympathetic but seem to lack concrete ways to help.
Thanks mikec11. I have been checked for other factors that could be causing the fatigue and all else has pretty much been ruled out. I was diagnosed with sleep apnea June of 2017 and use a Cpap machine which has helped significantly with my rem sleep. I think if I change my diet which I am working on and get to know my limitations hopefully the energy will come back. I will be only 50 in Nov... I am a relatively young man to feel this tired. Make it a great day.
Hi Dew,
Fatigue is a common complaint with CLL and definitely can be due to the illness (provided other likely causes have been eliminated). You'll find plenty of discussion about fatigue in previous posts: healthunlocked.com/search/f...
As you'll read, doctors, oncologists and even haematologists that don't see many CLL patients often dismiss CLL as being the reason for our fatigue, usually because blood tests don't show sufficiently bad enough anaemia or high lymphocyte counts that (they think) could explain it. Yet even early stages of CLL with low lymphocyte counts, fatigue can be crippling for some of us and is indeed one of the reasons to start treatment if it is severe enough. That wouldn't be the case for you, given you are still able to work and be reasonably active.
I suspect that in your case, recovering from those infections is also a contributor. You say your 'Other numbers are OK', but have you had your Immunoglobulin levels checked lately? If your IgG is sufficiently low and you continue to get serious infections, your specialist may be able to prescribe IgG infusions to reduce your risk of infection. As you;ll read, others have benefited from having their vitamin D and B12 serum levels checked and using supplements to boost them into the normal range if found to be low. Exercise can also help and it is good that you are trying to keep active. At work, is it possible to go for a walk if you are fatigued but not sleepy tired. You are fortunate that you are able to catch a nap at your desk.
Neil
Hi Neil. Thank you for your reply. I am currently seeing a cll specialist at Northwestern In Chicago. I had a cytometry test done which indicated indeed I have cll. Another test performed indicating IgG and 2 other Ig which checked out to be normal. I had a fish test done and said I am 13q deleted in which the doc says normally good news and disease is slow in progressing. All good news. As mentioned my wbc is at 26K and RBC and Platelets are in normal range. So why is this almost 50 year old struggling with fatigue? I am too young. My GP has ruled out everything else. I was diagnosed with sleep apnea in June of 2017 and use a cpap machine which has helped with my REM sleep and waking up more refreshed. I take vitamin D3 and B12. I am borderline diabetic and take medicine for high blood pressure and I do take medication for depression (which can make you tired in the first place). That is a lot to digest. I have started to change my diet and staying away from carbs which can turn into sugar and thus have lost about 15lbs in the last couple of months. I excercise and push myself when tired although sometimes don’t want to. I do not drink alcohol and do not smoke although I did both many years ago. So why is this relatively young man so tired? It is the cll and my body getting used to it. The infections did take a big toll on me and I could still be recovering? I am going to stay positive and hope the fatigue lessens as I change my lifestyle and get to know my limitations. I am determined to feel better and am hopeful. Make it a great day!
Hi, Dew77 ~ my experience with CLL sounds very similar to yours. I was diagnosed at 56 and otherwise very healthy. The fatigue you describe is the same as mine. Anyway, here's a very quick, informative, plain English video related to fatigue ~ best wishes!
I was diagnosed at 58 and like you the fatigue kept getting worse as I continued on w & w. By noon I was ready for a nap. Forget the bike rides, hiking and long walks. When i went on trips I would sleep during the entire flight. I started acalabrutinib 5 weeks ago, after 4.5 years on w&w. The fatigue is almost gone. No naps, I can get on the treadmill and go for several miles. Started hiking again but need to get back in shape. Everyone responds to treatment differently but my physical results have been phemenol.
It's a drug similar to Ibrutinib. It's still under FDA review and not officially approved for CLL. The drug is taken twice a day and has fewer side affects than ibrutinib. Others can probably provide more scientific info.
New here - be gentle!
I don't want to start treatment ever, however I know that I probably will at some point.
