I had a good but somewhat mystifying visit today with the oncologist. Last visit he was worried and this visit everything had settled down in terms of blood counts. So now he is not worried.
That’s good. We discussed my fatigue. He said that he doesn’t think my fatigue is due to CLL. I was shocked that he said this because I believed that one symptom of CLL was fatigue.
He said my lymph nodes are small and not growing in size. Where my 165k of white blood cells are hiding I have no idea.
I had gained 25 lb over the last 18 months. Maybe that is making me fatigued? I have lost 5 of those 25 lbs now. Is he just too polite to say my weight gain is responsible for my fatigue? Am I just depressed?
I describe fatigue as sleeping well for 8 hours and waking up with barely enough energy to get up and get ready for the day. I hike or go for a bike ride 4 to 5 days a week.
I am still on Watch and Wait. Diagnosed in 2017, likely had prior to diagnosis.
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CycleWonder
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With 165k white blood cells, about 1 in 25 of your blood cells would be CLL cells, compared to about 1 in 500 normally. That's where they are hiding. The highest I've heard is about 1 in 2, or 10 times what you have. Strangely, it's not a high lymphocyte count which correlates with fatigue, but how active they are in the nodes.
That must be why my CLL Oncologist referenced my nodes not changing in size . I had read that the B cells released chemicals that caused fatigue but he didn’t agree with that.
As a patient, I find it difficult to know what is related to CLL and what isn’t.
As you've read, fatigue is a commonly reported problem with CLL. You say that you "have a CLL specialist, one quite renowned and very experienced." What particularly worries me is your comment that "I had read that the B cells released chemicals that caused fatigue but he didn’t agree with that." Cytokine levels (considered by CLL specialists to be the cause of CLL related fatigue) are probably not easily checked outside of CLL research centres, but I would suggest that cytokine levels don't necessarily correlate with node size but with CLL cell activity.
What appears to be the issue here is whether your specialist accepts that fatigue can be a serious problem accompanying a CLL diagnosis but not in your specific current case, or whether your specialist doesn't consider fatigue to be a serious problem often caused by CLL. If your CLL specialist dismisses CLL as a significant cause of fatigue, hike/ride to a new CLL specialist pronto! If it's the former, it would help if your specialist recommended investigation avenues, which I would suggest would be best done through your GP/PCP. From the fatigue you describe, you might have sleep apnoea, but it would be helpful if your specialist shared why he thought your fatigue was not CLL related.
I'd encourage you to keep up with the hiking and cycling, given your specialist considers treatment is in your future. It really helps you get through treatment. I'm a keen cyclist and rediscovered the joy of walking after my diagnosis. Sharing my photography often gave me an incentive to get out for a walk. Of interest, exercising would often lift my fatigue, provided it wasn't too deep, when I had no choice but to drag myself back to bed.
A recent paper measured CLL activity in the nodes, blood and bone marrow and found the degree of activity decreased in that order, with CLL cells most active in the nodes. It's possible to measure activity by various means, but one way is by measuring the signalling proteins (chemkines and cytokines) pushed out by CLL cells, some of which enters the blood stream. There is also the enzyme Lactate Dehydrogenase (LDH) which can provide a measure of CLL growth.
An oncologist is not a CLL specialist.CLL specialists are usually haematologists.
Yes - fatigue can be a classic symptom of CLL regardless of whether the blood counts look good or not.
It doesn't mean that your fatigue couldn't be caused by something else, but it certainly needs to be looked in to. Not that fatigue in itself is dangerous, but nobody wants to wake in the morning after 8 hours of sleep and feel the way you do.
Please consider consulting a CLL specialist - not just for the fatigue, but for a better overview than an oncologist can provide.
Yes. I hiked all winter because cycling was just not feasible with the ice and snow on the streets and bike trails. When we could get back to cycling, I found I have to ramp up really slowly. If I try to push it, as I have done in the past to train for events, I feel exhausted for days afterwards. I also find the endorphin high lasts only about 30 minutes rather than several hours to 24 hours.
It's very easy to have an accident when exhausted, on a bike, or on foot..... The attention span can go walkabout, it can be difficult to concentrate🤹♀️...
And on any of those pages, look for the Related Posts box again, since each different title will trigger different Related Posts. We have 1460+ postings on Fatigue: healthunlocked.com/cllsuppo...
I have a CLL specialist, one quite renowned and very experienced. What I’m learning is that some CLL specialists don’t attribute fatigue to CLL unless there is a proven direct link. Such as lymph nodes increasing in size. Mine are stable. It doesn’t mean my fatigue is not associated with CLL but there’s no definite proof it is linked.
OK! I would suggest fatigue is the most troublesome CLL sumptom, its a little strange your CLL Dr taking that view. In my case ultimately Chemo proved it was CLL linked I guess.
You could have fatigue due to a myriad of other causes, infection would be an important one, so - wise to consider other causes than CLL. For sure there will be a cause, its good to know though - if its CLL - ride with it, if not, other measures my be required.
Thats very interesting because I had fatigue and fcr seemed to stop it. We went on cruises and I cant remember being the way I am now. When the remission ended 5 years later the fatigue began coming back. I take Ibrutinib and the fatigue and pain are worse. Yesterday I dozed all day and today I am trying to stop itby doing some jobs but as soon as I stop my eyes close. Anne uk
FCR works in a different way to a BTKi, could be worth a chat with your medical advisers as to whether there is another cause for your current fatigue...
CLL induced fitness loss is a concern, hard to measure, very subjective, but a real issue - and that too causes fatigue.
I am mindful of a very old friend and good buddy - who hates fitness stuff with a passion. At my worst with CLL fatigue he was always worse - simply cos he was not fit, essentially could not hack aerobic exertion. I have always had and maintained good exercise tolerance. However since FCR its taken a lot of effort to regain the fitness to pedal up some of my favourite hills.
In essence - we need to be fit for this CLL journey.
The fatigue of cancer is different to lack of fitness or being tired. It cant easily be described. A friend didnt understand until her husband had cancer and she told me that now she understands. When my friend had cancer I could look at her and ask if she had had enough and wanted to go home. She would nod her head and I could see her eyes were expressionless. I knew because I had been like it myself. I think I am better than I was. I could be fine and then it was like a vaccuum had sucked the energy from me including the enthusiasm.
I have had fatigue from many cuases over time - sleep deprivation, physical exhaustion after marathon bike rides, that of mental anguish, I think we all know these "fatigues".
The Fatigue of CLL I had in WnW - was "bone grinding" fatigue. Different to everything I had before.
I was retired and free to exercise - I found I was measuring - thru WnW - objectively was my decline in physical performance. Despite my best efforts I was losing strength and stamina and I was using a PT.
This reversed immediately I started FCR...
Interesting topic...
I knew someone who had fatigue of PMR, Polymyalgia Rheumatica. If I got that - how would I know its that and not CLL? More importantly how would my Drs know?
Heart failure or Lyme Disease too ... I am anxious my Dr advisers wont just blame CLL.
I just had my 2nd booster, the 5th Covid jab. The 4 before were fine, no issues. This one - a 3rd Pfizer - flattened me for day. Fatigue mainly. Binged a box set and the next day felt OK.
What hit me though, was the fact that I felt like I did pre FCR - in the latter days of WnW #1. That was realy disturbing.
I was recovering from a long ICU stay at the same time that my CLL took off. The symptoms for both were interchangeable, have a look at PICS & symptoms of CLL, what I decided to do was work on the fatigue no matter the cause.
I had to learn to not overdo it. I could do stuff, but overdoing it took me longer to recover from. It’s a syndrome called ‘boom and bust’. When I felt well, I did too much….
I went to a pain clinic and although not for cll that was the advice. Work out how long you can do things for without the fatigue kicking in and stop before it does. This may vary. Work out a routine. It takes time for your brain to get used to this. Slowly do more. It does help but is time consuming. When you are very fit its hard when you arent in pain. A lot of chronic problems are related to your brain and nerves thinking they are under attack. Thats why upping the activity slowly stops your brain going into a panic and trying to protect you. I hadnt thought to try it with fatigue. Its worth a try.
I got more tired as I progressed on W&W but, like most of us, put it down to something else and carried on as if I was same as ever. I think the red cells get affected and this impacts our energy. I certainly felt the fatigue lift in time when I started treatment. Which is my (not very) scientific answer!
I suffer from fatigue. My haematologist agreed that it can be a symptom of CLL but not a trigger for treatment and he was dubious about it being the case so he carried out tests to eliminate other possibilities. Everything else has checked out ok and he now agrees that my profound fatigue is CLL related. He did say that he had treated patients in the past with chemo and when the treatment was over their fatigue had disappeared. For some reason patients with CLL are often not taken seriously if they are constantly tired. See if you are able to pin your Oncologist down to investigate other possible causes of your fatigue, there may be another underlying problem but sounds like a classic CLL symptom.
I always felt fatigued when I was on watch and wait. I think its part and parcel of the disease, and something we all struggle with. Your high lymph count is what is circulating in your blood, that’s not always a indicator of progression to treatment.
When I progressed, the following happened.
-Swollen Lymph nodes got bigger
-Spleen grew to 245 cm
-increased fatigue
-More infections
-Weight loss. I lots about 21 lbs over a years. > 10% of my body weight.
The one thing my CLL consultant said to me, do not blame CLL for everything. Severe fatigued could be related to other conditions. Thyroid problems is an example? I would take a second opinion, and ask your doctor to check for other potential causes.
I am 4 years in to CLL and still W&W. And I am an overweight lady. Have been majority of my life. One important thing I have learnt is that in overweight people doctors blame EVERYTHING on being overweight and some tell you that everything will disappear if you lose the weight. This is not true of course. And fatigue can work the other way - you are physically doing less because of the fatigue - I know that you aren't doing less, but some people do, very justifiably.
I never accept that something is weight related unless the doctor has ruled out other things. I was put on a medication that I didnt want to go on a long time ago. I gained weight, I reminded GP that weight gain was a known side effect of the medication. I asked her to give me something else, I got a lecture about her being the doctor and me being the patient and if she took me off that medication I would gain even more weight. just before the pandemic I had a none weight related serious illness and ended up in ICU for a couple of days. First thing they did was take me off that medication. And the weight fell off very quickly - I had been retaining large volumes of fluid, because of that medication.
I don't if that could be the issue for you, but regardless, please don't let doctors blame everything on weight
I can think of 1 person in particular who has always been overweight. She owns a hairdressing salon now. She never stops. She works all day, she is very artistic and cares for her family. Birthday parties for her son are often fancy dress themed and she makes all the costumes and decorates the house and garden. She also smokes. I have no idea why she is overweight but she is great. Its the luck of the drawer. I am only slightly overweight and have a great list of ailments that cant be blamed on that. I take lots of medication that I have no control of. Epilepsy that thankfully has only been Grand Mal in my sleep. In order to take Ibrutinib my meds were changed. This caused Petit mal and stopped me driving for the time being.
Yes I think I did too. Thankfully I can drive - no epilepsy issues, but other issues. I think there is a link genetics relating to being fat, as well as other issues from growing up - there certainly is for me.
Before starting treatment, I replaced the drive belt and rear brake disc on my motorcycle; this is a 2.5 hour job. It took me three days and I could barely pull the 160Nm on the torque wrench to secure the rear hub nut. I kept having to stop for a rest, a cup of tea, more rest. Now I'm on acalabrutinib, I'd do it in the 2.5 hours easily. Now that's not just a 'post hoc ergo propter hoc' assumption, it really was CLL induced fatigue.
CycleWonder I’d you aren’t seeing a CLL specialist, I’d advise doing so. Fatigue is a symptom of CLL. It seems to me that your doctor may be insinuating that your fatigue is due to weight. When the white cells increase, the red cells gets crowded out and that’s where the oxygen supply is to help with energy etc. Please don’t allow that doctor to shirk your symptoms off. Much luck to you.
I wish I could help. That issue perplexes me constantly. My specialist says fatigue is to expected and that the Calquence I am taking daily also is fatiguing. (I am 69 and was diagnosed CLL in December 2017). In January, the week I was in the ICU with COVID they took away the Calquence for two weeks after. Like you, it troubles me greatly. I cannot walk over a mile without having to rest (4 years ago I was doing 400 mile bicycle rides in 7 to 8 days). Now, since my COVID hospitalization three months ago it is the worse ever - I wake six to eight times every night, I fall sleep sitting up at dinner, at a movie, at reading, at a computer, etcetera and about four or five times a day. My shortness of breath is huge - takes 30 seconds or more to recover after putting on a shoe. My respiratory infections comes every few months now. Just got today's test of my sputum and it RED flagged the report with the words, "MANY yeast based and spore based infections." I am going to see a pulmonologist this week and a neurologist too. I am hoping there is something that can be done. I cannot see living like this. It really saddens all my family though I stay very chipper about it. They do not buy my "chipperness." If I learn anything useful I will share it. Thank God for this great forum.
I agree with you. I think fatigue is a side effect of CLL. I was diagnosed in 2015, had to start taking Imbruvica in 2017 and the oncologist always asks about my fatigue level, which incidentally has been OK until this year. Now I have NO energy! I have also gained 15 pounds but no one seems to want to attribute that to the CLL OR the Inbruvica but i eat one small meal a day, ride my bike for 1/2 an hour daily and eat fruit for the other two meals. I cannot seem to lose the weight.
I am working on eliminating other potential causes of fatigue. A back specialist. I got rid of heartburn by changing what and when I eat. I am losing weight again - it took me a long time to get the mental energy to address my weight gain.
Like everyone else, even I successfully avoided Covid, it’s been a long journey, sometimes lonely. My family has been incredibly supportive.
We have a regular set of bike rides we can do. Neither are very long. One is 7 miles with lots of hills. The other is 10 to 15 with much easier hills. I can do those rides without triggering extreme fatigue so I will just keep doing them as regularly as I can, weather permitting.
I will see how it goes.
Hello CycleWonder
Appreciate your post & just wondering if you have had sleep apnea test? Curious because it's a cause of fatigue, waking up feeling unrested. People often associate it as an "overweight" issue. However, it can be from many causes such as oral motor structures (larger tongue, etc.), height (many tall people have it that are slender).
Not grasping at straws here, just popping in with something you may not have considered.
Hoping you find some ways (if not an exact answer) to feel much more rested.
Hi there, I was diagnosed with CLL in 2018 and still in WW. I too have suffered from the fatigue and my Hematologist checked iron levels with the rest of my labs and they were borderline so he suggested iron infusions. I did 3 of those and felt so much better. My RBC and iron have come up some as well. That could be part of the fatigue. The other thing that can contribute to fatigue is low B12 levels. Hope this helps and you get to feeling better
My CLL fatigue and 3 years of anemia disappeared by the 6th month of O+V. Some other articles out there from France and Australia mention using ironomycin with venetoclax with a synergistic effect, which may in the future have a use in preventing or treating resistance to venetoclax, since two different pathways are at work when used together.
Below is the article from the above url:
Could Iron Homeostasis Be a Therapeutic Target in Diffuse Large B-Cell Lymphoma?
By: Sarah Campen, PharmD
Posted: Friday, March 11, 2022
Abnormal iron homeostasis is implicated in carcinogenesis and tumor progression, and it may well represent a novel therapeutic approach to high-risk or refractory diffuse large B-cell lymphoma (DLBCL). By establishing a gene expression–based risk score—the Iron Score—Jérôme Moreaux, PhD, of the University of Montpellier, France, and colleagues determined that a lysosomal iron-targeting small molecule, ironomycin, developed by coauthor Raphaël Rodriguez, PhD, of the Institute Curie, France, may inhibit DLBCL proliferation. Ironomycin also seems to induce significant cell growth inhibition, ferroptosis, and autophagy, according to research published in Cancer Research.
“Abnormal iron homeostasis is implicated in carcinogenesis and the progression of many tumors. Ironomycin is a synthetic derivative of salinomycin that presents an antineoplastic effect by accumulating and sequestering iron in lysosomes,” the authors stated. “Altogether, these data demonstrate that a subgroup of high-risk DLBCL patients can be identified with the Iron Score that can potentially benefit from targeting iron homeostasis.”
In this study, researchers identified 11 genes involved in the regulation of iron homeostasis that demonstrated a significant prognostic value; when combined, these genes formed the Iron Score. High expression of three genes—ALAS1, HIF1A, and LRP2—was associated with a good prognosis, whereas high expression of eight other genes was associated with a poor prognosis, including HMOX1, HMOX2, and HFE. The prognostic value of the Iron Score was validated for overall survival in several independent patient cohorts.
Dr. Moreaux and colleagues also analyzed the effect of ironomycin and two clinically approved iron chelators, deferoxamine and deferasirox. Ironomycin exhibited significant toxicity against DLBCL cells at nanomolar concentrations—without major toxicity for non-tumor cells—compared with the other iron chelators. Additionally, significant synergistic effects were observed by combining ironomycin with doxorubicin, BH3 mimetics, Bruton’s tyrosine kinase inhibitors, or Syk tyrosine kinase inhibitors.
CycleWonder, Yes the CLL's side effects and or their treatments cause tiredness. It could also be sleep apnea. I have very shallow breathing issue and that is what happened to me. My o2 was going down at night to 73%, so I was having nightmares and hallucinations. If you even think it could be that, then get yourself an o2 monitor to use while you sleep. They are anywhere from $100 to $250. If you can't afford to, get your Dr to order you a in home sleep test
My husband has sleep apnea. Since he started using a CPAP machine after a sleep study, I’ve been sleeping better. I no longer wake up to the silence of him not breathing. But I show no signs of sleep apnea.
That is great to hear that your husband got on top of that. I want to say that I have no idea and I doubt that the two are related. Sleep institutes claim that more than 50% of the population has some sort of sleep issue. It would not hurt if you asked your GP to do an in-home sleep test, if you have the insurance to cover it. Now that we know what mine is and most of the things that go with it, my wife and I suspect that I have had a mild case for the last 20 or so years and it did not seem to both me. Then last year it got really bad and I was non-functional for most of the year. Don't get me wrong, I am still kind of exhausted most of the time from my medical illnesses as well as the medications I take. But at least it is one more thing taken care of. Have you check your thyroid for issues?
Not sure why your doc denies your CLL could possibly be causing your fatigue. I had the classic cancer related fatigue symptoms of inability to concentrate and inability to make it through a work day, shortly before diagnosis. It's what sent me to the doc in the first place. I had never ever before felt fatigue/weakness like that, and the inability to concentrate/focus scared me. And I continue to have it whether it's actively growing, in treatment, or in remission. Although it's less severe in remission.
My doctor told me the same thing when I was first diagnosed but after one week on Gazyva it was permanently gone. I suffered with fatigue for 4 years before I got treatment (also "Watch and wait". I think the doctors are wrong. Nothing else changed except the treatment.
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