I'll make this short. Been on a clinical trial (Ibrutinib and Venentaclax) since last November.I've experienced periodic bouts of tiredness but they have gone away in a day or so. Recently,(last 3 weeks) every day I hit a wall around 11 AM. I mean I absolutely have no energy and just want to lay down ( but not sleep). All my number are good to excellent. my daughter has suggest I go in for a B vitamin IV drip.
Any input or suggestions?
Thanks in advance
It’s sounds like common fatigue associated with cll. It can however be made slightly worse by certain therapies like Ibrutinib which I take myself. I have found though a few brisk walks or alternative light exercise a day helps a great deal.
Stuart
Hey PW
Fatigue is common in CLL and is related to Cytokines. I walk about a mile every day...it does not help with the fatigue...but I figure it has to help something.
There are many many posts about this subject. I get some Ritalin which helps some...but but I don't like it (leaves me hung over) and only use it a day here and a day there.
My fatigue is extreme on many days...and bad every day....I feel best when I wake up (which does not mean I feel good...like I didn't get any sleep....and I sleep like a baby) and by 3pm I am done for the day...earlier if it is stressful day.
And I do not mean tired, like sleepy...fatigued...no energy...no motivation....I tell Renee if the house burns down, save herself...I might have to think about if leaving is worth it.
Scott
Hi Scott
Sounds like your suffering a bit, sorry I’ve seen a few of your posts but never joined in as of yet, have you had any treatment or are you still lucky to be on watch and wait.
Stuart
Still on W&W...diagnosed about 16 months ago. No treatment...although because of the fatigue I begged my Hematologist for treatment the first 6 months....but she gradually brought me over to her side....not one second before I need it.
Scott
Plenty of conflicting evidence whether starting early or holding offs better but I’d probably agree with your specialist.. I wasn’t quite so lucky straight in to treatment and had to learn as I go but fortunately thru the roll of the dice my treatment landed in my favour.
Have you tried a diet change to see if it helps?
Ummm, when I heard the word "Leukemia" and "Blood Caner" I pretty much used that as a free pass to eating out of a can or bag. I know many disagree with me...but most of my life I tried to eat healthy (not always successful) but I would say well above average....I still try to eat "healthy" food...but less concerned about preservatives and additives...I mean what are they gonna do...give me cancer or something 
I can't say I feel better or worse for eating more prepared food....I have always eaten too much bread and pasta...I am about 10 pounds overweight and am trying to cut those two things out and lose 10 pounds....well, I WANT to lose 10 pounds and cut those things out....it is more of a "tomorrow I will start" plan, right now...
Scott
Renee? Are we having spaghetti tonight??? I hope so
I definitely know that feeling. I get affected by food which I realised while I was being treated so I’ve had to cut out pretty much all the goodies... not to say that every now and then I don’t indulge.
If you don’t feel worse for eating everything then all in moderation😁I’ve just noticed a lot of people on the site suffer the same as me and I’ve been wondering if it’s just a few or all of us but obviously not.I hear you in the tomorrow plan, it took me a long time and being diagnosed to give me a kick .
Sounds like your well looked after at home, never turn down a bowl of spaghetti 😁
Oh, I don't do fast food unless it is a choice of that or nothing...I will hit a drive through maybe once or twice a month, tops and only if it is a last resort......get chicken from KFC or Wendy's....
Is Wendy’s a burger bar we haven’t got those here, I’ve got a KFC and McDonald’s about a 30 second drive from where I live. A nice burgers definitely a weakness of mine but I’d rather home made on the barbecue.
Where are you?/ UK? And yes, Wendy's is a burger place...I thought world wide....supposedly better for you than the other places....and oh yeah...BBQ burgers...Renee BBQs in the dead of winter sometimes if I am lucky
I do all the food shopping and have to go...we got nada, zilch, nothing to cook on the grill....
Scott
Yes I’m in the U.K... never seen one yet though.. your starting to sound spoilt by Renee 😊 can’t beat a good bbq anytime of year.
What part of the states you in?
Renee is the best thing that ever happened to me 25 years ago
She knows I like red Jelly beans...and she doesn't like or dislike them...and she eats Jelly Belly's...and puts all the red one's in a cup and once or twice a week brings me a bunch of red jelly beans
Scott
Lucky man .. that’s your reason to get up everyday
It is my reason for living....
Oh, in Maine...very top Eastern Corner....very very cold in winter....as cold as 50 below with wind chill, 20 below without....and we get about 5 to 10 feet of snow a year...
On w & w for 8 years now. High white count 234k now.
This describes my husbands fatigue accutately as well.
Dear pwebster,
I have the same problem.
Although what you and I experience may come under the umbrella of CLL fatigue/tiredness, it is very different from a general lack of energy I had in the earlier phases of the disease.
I am on ibrutinib. And I get poleaxed by heavy tiredness at two different times. Often, at about 8.30 in the evening I sense it coming on and I say to my wife, "I've got to go to bed" and disappear immediately. I fall into a deep sleep until about 12.30 am, when I awake with a start, get up and I'm bright and breezy for an hour before going back to bed. Usually in the early afternoon I need to relax on the sofa, and, then suddenly, it's almost though I can't move. Usually I'm asleep before I can get myself to bed. Previously I also had the sense of being poleaxed but was unable to sleep, and I would lie immobile on the bed for a couple of hours before I felt able to move.
I suspect these bouts of extreme tiredness are a side effect of Ibrutinib. After sleeping I'm fine again. I don't have an pain or other obvious side effects.
Before Ibrutinib I was on a combination of Rituximab and Venatoclax, but I didn't get on with Venatoclax and was taken off it.
Although I have mentioned these bouts of extreme tiredness to my specialist, little interest was shown. They seemed to be accepted as par for the course.
I can offer you my sympathy, but I haven't a clue what you, or I, can do about it,
Best wishes, Peter
Peter, thank you for your reply. It is the only one that really addresses the issue when someone is actually under treatment. I guess I'll just continue to force myself to get through it and hope that it is simply a periodic issue.
Peter( my name as well)
Peter - out of curiosity, what time of day do you take your ibrutinib?
I take imbrucia at 1pm and feel sleepy at 8pm.
I've been thinking of changing my dosage time to later in the evening.
sounds like my CML.
Sorry to hear you are laid so low.
I spent years with a partner suffering CFS/ME (chronic fatigue) -- not sure how she coped.. She could sleep for hours but awake without feeling refreshed. She'd suffer very badly if she overdid things.. Lack of any energy was the issue. Long and short of it? She was suffering heavy levels of background infections, was Vitamin A deficient. During 8 months she corrected her vitamin deficiencies (and made certain of vitamin/mineral intake with supplements and nutritious diet..), gut dysbiosis was treated (bad bacteria present, good bacterial missing).. Her infections cleared, her health improved, her eyesight/night vision improved (VAD fixed), her stamina returned.
Me? W&W 18 months. Fatigue, of course! Recently I overdid things consistently for a week - could not sleep, accepted wine and beer every night with dinner, worked hard with my brain all day.. Suddenly I had zero energy and simply had to rest, not lift a finger.. I recognised that this was different to leukaemia fatigue -- this was a genuine failure of my body to create sufficient energy.. Something biochemical had gone wrong - perhaps a mix of cytokine signals, and of oxidative load on mitochondria what with alcohol every day and little sleep..
My previous experience was helpful - I knew that I now had to rest and behave to conserve energy as far as possible. I also knew that perhaps I should eat something hugely nutritious.. My choice here was liver and onions, two days running, cooked with a little lard, eaten with no more than half a slice of bread. And I consistently took my supplements that include vitamin B complex in absorbable form, magnesium, vitamin D, curcumin..
By end of a week, my energy levels were returning. Then a similar but shorter interval of fatigue 10 days later. Now back from an energetic wedding event, I must stay off alcohol, stay hydrated, eat only good nutritious foods, and rest extra.
I'd guess that your treatment is an extra trigger for trouble with energy production - my own feeling is that when we 'hit the wall' and recognise that there is no energy left, that we must do some things: 1. Conserve energy, 2. Rest/take it really easy, 3. Stay positive - energy can return if we consistently give our bodies best chance, 4. Eat nutritious food, avoiding sugar and alcohol, reducing carbohydrates. 5. Supplement with absorbable forms of vitamin B complex and magnesium
I take this (cheaper offers when buying multiples):
shop.igennus.com/Pure-Essen...
It is also available on Amazon.
amazon.co.uk/Essentials-Adv...
Shedman,
One of the things I read last year is they are reclassifying Chronic Fatigue Syndrome as an auto immune disorder involving raised levels of cytokines.
One thing that bothers me about the fatigue issue issue is the "power source" for the cells is the Mitochondrial DNA which lives outside the cell nucleus and from everything I can find has absolutely zero to do with CLL....so I don't understand why my Mitochondrial DNA seems on strike...I think it is likely a real horror show like Fukushima....and maybe one disaster after another....and my nuclear core melted down or something....and can only cause a ton of trouble for everyone now....
Scott
What? Building this in an Earthquake zone, right next to the ocean is super smart...nothing could possibly go wrong.
How interesting. I had not heard that about CFS/ME. The story I told did involve infection (VAD - vitamin A deficiency is major cause of most(?) immune dysfunction, hence it is the first target of WHO when intervening in the 3rd World / famines etc.) and when the infection was suddenly clearing, I guess cytokine signalling would also have been normalising.. and so that girl's CFS disappeared.
Reference CLL.. I guess overdoing things also worsens background levels of infection..
But in all of this there is a boring biochemistry angle: the fine line of biochemical equilibrium that needs to be maintained in order that all manner of chemical interactions happen or happen closer to optimally.
Eg.
Beta-carotene may be a healthful pre-cursor to vitamin A (retinal esters) but without spare energy (ATP from mitochondrial action) we cannot cleave the beta-carotene molecule - an energy requiring process. Someone with vitamin A deficiency and chronic fatigue cannot usefully be treated with colourful fruit and veg / beta-carotene, as it won't be able to fix their vitamin deficiency.
I need to be more cautious about having a beer, far more about having 2 beers! And generally find more opportunity for cat naps and so on.
Likely your words are wise - we all must avoid blowing our tops or melting down..
The whole Adenosine Ti-Phosphate is too insane...we make and recycle like 100 pounds of the stuff every single day.
I want a beer and a shot of whiskey...but I can't take the hang over....so I am stuck just wanting...not very cautiously either...kind of blatant really
Hmm half my post disappeared....I am not sure I have the medical stuff from the CFS as an auto immune disorder....I found a story in the Washington Post and followed that up finding the study the story came from....but I definitely have the medical papers saying people with CLL have 17 different raised cytokines compared to non CLL people....
Scot
All that ATP recycling.. Wow! How important our mitochondria are!
...and there is the other supplement of interest to folk over 40, the sick, and enfeebled: ubiquinol (the reduced form of Co-Enzyme Q10)
50mg 3 times a day is a good target regime, but it is one more thing that carries significant cost.
..it is also a substance found in highest amounts in offal (heart, kidney, liver, etc. - hence my high nutrition choice for an enfeebled state: liver and onions or devilled kidneys.. I'll also admit a penchant for duck hearts..
#confession time.
I'd like to learn more about these pesky cytokines. Can you send me a link to the article/research? I find this fascinating.
PM me your email address. I have most of them on a hard drive I call my Library of Horrors and can send you several I have
That was my symptom when my thyroid started getting whacky.
I completely sympathize! CLL-related fatigue is overwhelming and unavoidable. This is NOT like just "being tired". My body and eyelids turn to lead and nothing can keep me awake when it hits. All the exercise in the world doesn't help (it can hit me during walks or even AT the gym!) and coffee, when it hits, just makes me dizzy, loopy and nauseous. Your body is telling you it's been working overtime and needs rest - you just have to give in and nap. I've napped at the gym, in airports (AFTER de-planing!) and have even had to pull over the side of the road and slept in my car. The good news is since starting treatment with monoclonal antibody infusions (Gazyva & ibrutinib), that kind if debilitating fatigue is far less frequent (used to be daily). I might still get "tired" and nap, but that's very different. You are not alone. Just give into it.
thanks Tim, that helped
I think fatigue is the hardest symptom of the disease & its treatment to deal with. My "hitting the wall" time has fluctuated. When I worked it occurred as soon as I got home. When it moved earlier in the afternoon, I had to stop working. Rest, naps, meting out your energy are all helpful, but do nothing to stop the fatigue from happening. Of recent, I found out I was iron and B12 deficient and those were both corrected with IV ferritin and B12 injections. I have found medical marijuana helpful too. I get products from the sativa leaf which have stimulated me enough to get me moving off the couch.
Definitely get a blood draw to check B-12 level. Pills/Injection can help. Keep in mind that CLL comes with on/off days of tiredness even if blood counts are good.
hmmm, how do I do that?
Long-Term Ibrutinib Therapy Reverses CD8+ T Cell Exhaustion in B Cell CLL
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