I am in the W&W phase, am not having anemia, but have been so fatigued it is hard to get through the day. Also extremely sensitive to heat. Is this unusual?
Extreme fatigue and CLL: I am in the W&W phase... - CLL Support
Hi J-girl. The extreme fatigue is not unusual and was the reason mine was identified so early. A couple of years after I left work I read an article here about the effect of B3 on fatigue. I talked to my haematologist and she read the article and agreed I should try it. It has really changed my life - I have energy and can think again. I would suggest you consult with your doctor first. I don't know where you live but in Australia I can buy Nature's Own brand over the counter for $10 for 60 days' supply. Please consult with your doctor first though. As for heat - not sure if it is CLL related - but also experience this - it may be age related though since I'm 63. Good luck
I should have added here - the B3 was initially for my propensity for skin cancers - this study indicated it was worthwhile trying: nejm.org/doi/full/10.1056/N...
A positive side effect was that the fatigue diminished too.
Look at the pinned posts about the use of D3 too - many have had success with that but really have to eliminate other causes by working with your doc.
It is really important you discuss this with your dr Vinnet. Your dr will know if it suits you. I weigh 60 Kg so only take 1 per day but the study listed above had people taking more. My skin cancer developments have slowed down but the great side benefit for me has been a shift in fatigue levels. This has improved further since I lost 10 kgs and exercise a lot more. I do still experience fatigue especially after long trips especially after long flights. Please check with your doctor. Mine read the study results and was a little sceptical but was impressed with the outcome.
Hi I would also be interested in other patients' experiences of fatigue, especially in the early stages.
I am very early stage - at the MBL/CLL borderline - so my consultant thinks I should be symptom free, but I am currently off work long term with fatigue and am improving slowly as I walk about, rest, spend time outdoors, etc.
As you read through the very many posts from other members facing both fatigue at the early stages of CLL and disbelieving doctors/specialists (though not experienced CLL specialists I hasten to add), you'll find you have plenty of company. CLL fatigue is unrelated to stage or lymphocyte count in the blood. This makes sense when you appreciate that only recently did researchers find that CLL cells in the blood are in a quiescent (inactive) state and are at their most active, kicking out messenger proteins that mess with our immune system (including our temperature regulation). healthunlocked.com/cllsuppo...
It's no wonder that CLL fatigue can be likened to how you feel with a bad case of the flu...
As you'll read, many of us have found partial improvement from boosting our vitamin D3 and B vitamin levels to normal levels as appropriate (obviously under the care of our doctor) and fatigue permitting, tried exercising when the fatigue hits.
Yes - we had a useful earlier discussion and I enjoyed that link. So it's about what the cancerous cells do when they are active in the bone marrow, rather than the numbers present in a quiescent state in the peripheral blood stream?
I've been tested for Vitamin D and B levels and test results have come back normal which is good. I agree with you on supplementation - I've been taking general vitamin and calcium plus D3 supplements for some years after earlier being diagnosed with Vitamin D deficiency.
I also agree with you on exercise - standard fatigue management pattern - alternating between low, medium and higher levels of activity on about a twenty minute cycle is I believe the theory of what you are supposed to do for fatigue management. It fits quite well around housework and shopping locally on foot. Running would be a bit like going to the moon.....
Hi - latest in the fatigue saga is that I have been off work with fatigue for five months and have applied for ill health retirement from my government job, but have just been refused it because the assessors and the consultant do not think my fatigue is cancer related, so think I should be getting 'treatment' for my fatigue and should get well again. Hey, ho!
My employers just want to give me a pay off and wave goodbye, which I should be grateful for, but that will leave me with not very much money to live on, and I have difficulty believing I will get well enough to get a job.
I have to supply further medical evidence for an appeal, so any thoughts on what medical evidence and links I should supply on links between fatigue and MBL/CLL? I suspect, even on latest blood test results, my MBL level is less than 4. It was 2.8 just over a year ago so only a quarter of my lymphocytes were cancerous then.
You sent some useful links last time we talked.
Also, assessor is claiming that MBL is common - 1 in 200 of population over 45, but I think they are talking about trace MBL rather than high level MBL. Anyone got any links to material on this please?
And does anyone else know a CLL specialist in London UK who takes fatigue seriously? I really don't feel very well supported by my hard pressed local NHS haematologist who, having tested me thoroughly, has put me in the non acute boring pile and turned back to the people that are seriously ill.
I feel for you, struggling to overcome your fatigue without adequate medical support. It doesn't help that the assessor is correct that MBL is common and the incidence increases with age. Further, those with it are unaware of it unless it is picked up in a follow-up blood test checking why a lymphocyte count is high. It's a possible precursor to blood cancer, specifically CLL and until that happens, it's just a population of clonal B-cells in the blood that don't do much. It's when it starts moving into lymph nodes (where CLL cells create a nurturing micro-environment to support their active phase) and infiltrating the bone marrow that it becomes CLL.
This blog by Dr Sharman on MBL is probably one of the better explanations: cll-nhl.com/2013/07/monoclo...
Provided you've eliminated all other causes of your fatigue, you might be able to get somewhere with another more sympathetic CLL specialist, but I suspect they will need to prove that you have more than MBL, i.e. involvement beyond the blood supply. I presume you've had tests that show you have no swollen lymph nodes and that your spleen and liver are of normal size? If you had the SLL expression of CLL: healthunlocked.com/cllsuppo..., that should help your case. Do you have any historic blood test results that can show reductions in your platelet or red blood cell/haemoglobin counts that could point to bone marrow involvement?
I recall some recent discussion on different MBL groupings, but can't remember where. Perhaps someone else can help?
Hi Neil - Obviously, it is in the bone marrow too, as the consultant says. But a lot of my results are normal. My reticulocyte count is just slightly above normal - latest score 106.2 and previous result also above normal, but I am told that is not significant and just means my bone marrow is working slightly harder to keep the red blood cells at normal levels.
Do we know what the incidence is of MBL scores above 2.5 in the general population?
Even if we knew the distribution of MBL counts, I can't see that this statistic would do much to assist your cause. That's because those with CLL with low lymphocyte counts can report extreme, even debilitating fatigue, while those with counts 20 to 60 times normal may be otherwise symptom free. What matters is how active the MBL cells are - how many cytokines they are flooding your body with and giving you flu like symptoms.
I think your best option is to find a supportive, knowledgeable CLL specialist familiar with severe fatigue symptoms.
Here is a good paper on high and low count Monoclonal B Lymphocytosis (MBL).
I have had a first read of this. It is interesting - and explains some of the assumptions that there will be a lack of progression. My case is a bit different because three of my maternal relatives have died of leukaemia, one of them from non Hodgkins lymphoma, and I have had a steadily rising lymphocyte level over a decade, even though the score for cancerous cells is only 2.8, well below the 5 threshold.
One of the problems with the idea of Monoclonal B Lymphocytosis (MBL) is that it is very difficult if not impossible to separate Monoclonal B Lymphocytosis (MBL) from SLL, due to normal bood counts in both. There are also differences between familial and sporatic...
There were a couple of studies a few years ago looking at this problem, but they don't seem to have much traction...
There are some good studies from the Mayo perhaps 6-7 years ago, and they address the problem of overlap as well...
In my view its still a work in progress.
Emily, I too experience this type of fatigue every day. Started 18 months ago...light, g0t something called Bells Palsy last April and the fatigue crashed down to stay. I was not surprised when 3 weeks later my doc told me likely leukemia and sent me to a useless Hematologist...so I had to learn, fast. The fatigue involves both BCR and JAK2 genes (chomosomes 9 bad X if I recall). Your body is being flooded with cytokines and chemokines....exactly like you have bad flu, pneumonia, etc. Both your body and mind are screaming to hide, lick your wounds. CNS stuff (adderall, Ritalin, Vivance) I found erratic at best...30% great...or take it and sleep for 3 hours. Walk 1 mile a day with my wife and no, it does not help. Worst part my numbers just are not that bad....but my life is. Plan on seeing doc next week I am not doing this W&W for 5-10 years...this is no way to live
The fatigue saga continues. They have now tested my early morning cortisol. The result is 738nmol/L compared to the reference range for this time and lab of (133 to 537). Doctor has gone on holiday, so I need to talk to another GP on Monday. I've read Wikipedia, which suggests a range of causes including hypoglycaemia, which I do seem to have problems with, and also viral infections and exposure to cytokines. Anyone else had any similar experiences? Any insights?
I have been regularly complaining about my low energy since i was dx 18months ago. Stage0. I am male66.
For past few days, the fatigue has become worse. I feel like clinching/grinding my teeth; heavy eyes;just want to lie down. Crave for sugar and coffee which seem to give a short boost. Last month i had my review and onco as well as GP dismissed my complaint.
My problem is real . I am have to travel 2mrw and i need some quick fix?
I don't think there is a quick fix. The wider CLL community including CLL specialists acknowledge that the problem is real. In fact, severe fatigue is one of the accepted triggers for starting treatment. Are you able to find a CLL specialist or at least a haematologist who knows more about CLL than your current medical team?
Thx Neil for swift response. My onco is the haematologist. There are no CLL specialists in India.
What surprises me most is that i went on a two week holiday to australia last year in june. I did not feel weakness or so much fatigue.
Hope u saw my blood results. I am really at loss at the moment. Do not know what to do. My GP or my onco give no heed.
Hi J-girl. I have been in the W&W phase of CLL going on 4 years now, and the extreme fatigue at times is almost amazing. Sometimes it is all I can do to get out of bed in the morning. We live on 5 acres, where we have a good size garden, which I normally love to work in, but the heat this year is almost more than I can take. I normally loved working out in the sun, and feel the sweat run off my back, but even at 80 degrees, I almost feel myself getting ill.
I guess it has become my "new normal". I try to get my outside work completed before it gets too warm, then rest in the air conditioning when it is hot.
It was the afternoon fatigue that caused me to investigate, and led me to getting blood work, and the discovery of the CLL.
Hi Jgirl! My fatigue is my main symptom. I am W&W one year and my hematologist recites fatigue for CLL/SLL would be never getting out of bed! Meaning if I don't have it that bad then it's age or another cause!
That being said I saw my internist and asked for other labs. He did further thyroid testing and found I was on too much levothyroid. Hyperthyroid may give symptoms of fatigue and sweats! Now 4 weeks on changed medicine I do feel some improvement however, out of the blue I feel as if a frying pan has hit me and I need to rest. Certainly, it is important for us all to peruse any and all possibilities for our diagnosis, however as more knowledgeable replies state here our CLL often is the cause and should be recognized by our physicians.
Best of luck!
I think the main reason some doctors dismiss the fatigue as not being CLL related is that there are so many other reasons for getting fatigue. However if everything else checks out ok (vit B & D, thyroid, etc) then it almost has to be CLL related! I'm lucky, my CLL specialist has always paid attention to the fatigue factor and level and at each visit he asks me to rate my fatigue on a scale of 1-10 since the last visit. My heart goes out to all of you who are still working and/or taking care of your children or other loved ones. I have so much admiration for you guys who still have to do it all while battling CLL!!!!
I was diagnosed June 2015. W & W still. No anemia. Fatigue was awful. My local oncologist didn't address it. When I went to MD Anderson they acknowledged it was an issue for me. They prescribed Ritalin!! I take .5 mg in morning. If I need another at 1-2, I take it. This might not be for everyone, but sure helped me.
As for as heat- I am sensitive. I think I freeze my poor husband in the house and car!!
Also early stage on W&W but also really struggle with fatigue & some days can hardly stay awake. Just have to learn to pace myself & save energy for work, bed no later than 10.30 and only go to Gym if not going out that evening. Developing a liking for a saturday afternoon nap !! Sometimes think I'm going bonkers so its good to read here that it is not just me .
I was diagnosed in 2012 during a work-up for fatigue. I was stage 0 and WBC was only 15. The fatigue progressively worsened until I ended up on long term disability. All other labs were normal and no other cause was every found for my fatigue. All my vitamin levels were totally normal and I take Vitamin D, B3, and B complex. At age 63 I was unwilling to give up my previously very active life and my career. Fatigue directly attributable to CLL is an indication for treatment according to iwCLL guidelines. Now that non-chemo options are available I pushed hard for treatment. If chemo was my only option I would still be on W&W. Fortunately my insurance covered Venetoclax and I started treatment December 2016. Before my Venetoclax dosage ramp up was completed my labs were entirely normal and there was a marked improvement in my fatigue. I honestly didn't realize how tired I was. I am feeling tremendously better and enjoying a full life again.
I was diagnosed 5 years ago at the tender age of 48.
Fatigue is my main problem to the point that it has stopped me in my job. Now under WW, my haematologist argues that the fatigue I experience is not CLL-related as I have no severe anemia. Yet there is no other explanation.
Vitamins and supplements have made no difference to me so I take a nap the moment I start "fading", which is every day, and in between I aim to be as productive as I can be. Exercise is good and I find that I need to force myself to get out there and run or cycle otherwise lethargy sets in.
What an act this has to be!
Live for good, Lapo
I was diagnosed about 9 months ago and am 44 now and on W & W. I just way my oncologist and told him about my fatigue and his response was since my numbers were still low it could not be the CLL. I can still function but after I come home from work I am exhausted. Not sure what to do should I see a specialist would they understand better (anyone that can answer please jump in)? Anyway it is just nice to see that I am not alone and not crazy.
Hello J-girl, I am interested that you have found difficult with heat. Each time I have mentioned to my consultant that, although I do not get night sweats very often, I am still affected by heat at any time during the day. I break out into a sweat all over and this can be during the hot summer weather or in a crowded room that gets hot. My consultant seems to always dismiss this and says no, it is only night sweats caused by CLL.
Yes, I was in W&W for 10 years until treatment started this February (I am currently approaching cycle 5 of 6 for FCR treatment). But I was feeling fatigued from the beginning. In fact for about 4 years prior to diagnosis while I was still at work. I still remember my boss saying to me "you must pull yourself together" when I was struggling with the fact my Mum had just had a stroke and I was her main carer, and I had loads of work responsibilities and I did not feel well! Very supportive! Was so glad when I took early retirement!
All the best,
You absolutely need a new doctor. Dartmouth Hitchcock almost killed my wife 20 yrs ago...world class neurosurgeon, her issue no big deal...one "quick surgery" became 5 in 3 years and a final at Beth Israel to fix all the damage. Doc don't listen to EVERYTHING YOU SAY, well they gotta go, period.
Wish I was near MD Anderson, they are soooooo cutting edge and publish beyond star trek technical papers and trial results. Extremely impressive...I would drive 250 miles to go there
We are 8 hours away. My doc did mention coordinating with them so might be my best option to have them come up with a treatment plan. I have curtailed my activities so much I am really frustrated. I used to work full time, jog, shop, etc. and now I just do what I have to do. My husband and I closed our clinic so I could get more rest.
I understand, trust me. I feel lazy and my fantastic wife 0f 23yrs is carrying most of the load. I never understood how someone like her could love someone like me....but now, I want her to save herself FROM me...terrible way to feel
JAKAFI ,Ruxolitinib, is a very expensive drug, more than Imbruvica (ibrutinib) and while the safety profile was OK apparently at MDACC study, the Sunnybrook trial with Dr. Spanner and the Spanish trial saw problems with anemia and thrombocytopenia.
Sunnybrook in Toronto, will be opening a Phase 1/2 trial combining Jakafi with Imbruvica (ibrutinib), as a CLL treatment, not a fatigue control.
I feel I've been tested for most things including FBC, thyroid function, reticulocyte count (slightly raised), infectious mononucleosis, ferritin, vit B12, , sodium, potassium, , chloride, urea, creatinine and other liver and kidney function, LDH, glucose, haemoglobin, CRP, T4, TSH, Vit D, Immunoglobulin A, G, M. Nothing else that offers any explanation. Got any suggestions?
I am curious about the modafinil and its effects - do you just take it for special challenges or on a daily basis?
I was diagnosed with CLL this year at stage1. Fatigue was a major symptom and, looking back a few years, fatigue has been hovering over me for some time.. Eg. I had struggled with or given up fighting over some workplace conflicts (persuading management to do their bit) - which is unlike me. I just did not have the energy to pursue things, to fight my corner, nor to 'push water uphill' .. and some clients deserted me. Relieved of conflict and stress, my lymph nodes swelled and here I am..
If I understand correctly, in purely simple descriptive terms, part of the fatigue issue arises because our deficient immune system detects faulty/tumour blood cells and thus gives out relevant fight signal -- "Alert - all immune systems/cells to work!" -- but our immune system cannot proceed with the fight.. The signalling repeats on a loop, and these signals deliver a sense of fatigue - no different to fatigue we feel during previous infections before we got CLL, where a cold or flu leaves us drained of energy - but with CLL limited or no immune battle takes place.. All we get is fatigue.
When I read about this, on this forum and elsewhere, I determined that I would make life harder for the tumour cells (naive optimism was upon me). My main weapons (as I understand things) include, to varying extents and with debateable usefulness, curcumin, green tea, infrared sauna, high fat low carb diet, improved circulation (of oxygenated blood) through exercise (and possibly through taking flaxseed oil mixed with cottage cheese as protein source for better absorption) wherein cancer cells don't like oxygen..
..with a 6 week run-up phase (the period of getting better acquainted with implications of CLL diagnosis) I started my regime..
Perhaps 2 stones/28 pounds/15KG over weight, for better or worse I lost 1 stone in about 8-10 weeks, but the fatigue mostly stopped..
Now, a month later, after relaxing my approach, I have gained a few pounds and - subjectively? - fatigue is more regular. I also have 'tendonitis' in my arms from fingers through shoulders.. Maybe this is CLL related bone pain? I cannot tell. But the relief from fatigue was good, and I am drifting back towards a reduced carbohydrate diet.. But I'll be more intermittent this time - perhaps 5 days on, 2 days off, moreorless.
Not that my experience will necessarily repeat, nor that this is necessarily something that will work for someone else -- all normal provisos: one approach does not work for all, etc.
I have been reading all the replies regarding the fatigue and heat intolerance issues, which I also have been experiencing for the last 4 or 5 years now, and want to relay to you all that the oncologist / hematologist that I see referred me to a naturopathic care provider to address the fatigue and immune deficiency issues. I have been seeing her for about 3 months now and she is addressing my "gut" concerns first as I have had lots or re-flux and heart burn problems all of my adult life. I have tried many if not all of the "home remedies" with little improvement. This naturalist doctor has suggested that I try bone marrow broth to see if it helps the fatigue and I was wondering if any of you have looked at the bone marrow supplements. I haven't gone that route yet. I am using a GI Repair powder, 3 times a day and 30 drops of Scots Pine Pollen 3 times a day for the fatigue.
I can't say that I have seen major improvements, but am sleeping better and the acid re-flux issues are some better. I do have to really watch the sweets and breads that I love so much.
Hi J-girl, obviously you are not alone as I am not alone. Fatigue is the only symptom I experience from my CLL diagnosis since 2 years ago at age 48. I am w & w. What is puzzling is that my numbers are in range and my doc does not seem to think the fatigue stems from CLL. Do the docs not realize that blood cancer and cancer related fatigue are directly related? Do they not recognize that this is a symptom that many of us experience? I just think they dont know how to treat the fatigue. I will learn to accept the fact that I am tired a lot but it is not easy especially cause I am only 50 years old. I can also try and change my lifestyle but when you feel fatigued it makes it more challenging. I have empathy for you all. Hang in there.