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CLL Support Association
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SLEEP ... SLEEP ... SLEEP

Stage 0 CLL on W&W - no anemia, do not feel depressed. Make list of things to do etc, but JUST WANT TO SLEEP! About 3 long naps/day. Onc says see internist first. Feeling a bunch of uninformative tests coming including another sleep study. I am a MD who can’t work but I have come to hate medical care! Any advice or thoughts as to whether this could be CLL?

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I have not read nor heard anything about stage zero cll causing drowsiness. I would not think stage zero cll typically would be accompanied by any symptoms for that matter.

You are an MD and I am sure know this better than I do, but many, if not most, of us are diagnosed with cll from random bloodwork not done in connection with any cll related symptoms. We typically do not get B-symptoms such as fatigue and night sweats until our cll is more advanced,

What does happen with cll, according to my specialist, is that as patients, once we are diagnosed, we have a tendency to relate most every medical problem we have to our cll. Every time I get a cold I curse my cll and my wife reminds me she gets colds too. :)

My very amateur take would be that, based upon the reading I have done, sleepiness is not a symptom commonly related to early stage cll. Even with later stage you read more about tiredness and fatigue, which do not always go hand in hand with sleepiness. Some people can have bad fatigue, but have problems falling asleep. Good luck with finding your answer.

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Thank you for your reply. I was not one to think I had every disease I studied in med school LOL and I actually forget about the CLL often. For a few months after my diagnosis, I was a bit more active but about 3 pm would feel ‘run over by a truck’ and sleep for 2-3 hours. I think that ‘may’ have been the CLL, cytokines etc.

Now, I at more of a loss and enjoy reading the different ideas here so that I can prioritize what I get checked first.

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As you know, our Cll hits us all in different ways. Moxie, if your quality of life is so impacted by your sleepiness/fatigue, and you really think Cll is the culprit, I would consider seeing a specialist at md Anderson.

Knowing when to treat is more of an art than a science. They have done fatigue studies there and might have some treatment ideas specifically for fatigue. I wish I had started treating earlier. I am not suggesting you are ready to treat now, but I would think it’s worth going through the analysis with an expert. I had a wonderful hematologist at Oschners in New Orleans, but he was not nearly as cutting edge with Cll as my doctor in Houston.

Of course Dallas has great doctors as well. Whatever you decide I hope it gets you to feeling better. Jeff

mdanderson.org/patients-fam...

patientpower.info/video/adv...

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Thank you Jeff. If I don’t find another non- CLL answer, I will do just that.

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I can’t disagree more with the other person who replied. Tho of course what he says is the lived experience for many people.

The crucial thing to understand about our illness is it comes in different flavors. And everyone’s experience is different. If your not seeing a CLL specialist I’m not surprised if they told you that fatigue can’t be caused by early CLL. There’s a myth that fatigue can only be caused by anaemic. Many thousands can give testimony how untrue that is.

In fact some people with the precursor to CLL, MBL, can even get fatigue.

Oh and did the doctor also tell you that you aren’t immunocompromised unless you are neutropenic. Don’t believe that myth either. My story is many years before my diagnosis I had two bouts of shingles before I was even 40! And I was actually diagnosed during a hard to treat pneumonia and have had loads of infections while I was stage 0.

CLL Fatigue is widely believed to be caused by cytokines imbalances. Fascinatingly there doesn’t seem to be much research into what specific imbalances are associated with more severe fatigue. Oddly there’s more research into the predictive value of citokines in fibromyalgia and ME than CLL.

Back to the subject of fatigue. My own life and medical career has been shredded by fatigue these past 16 months. The story of my first year can be found here wp.production.patheos.com/b...

I was stage o when I was diagnosed. Because I was so unwell as I recovered from my pneumonia I think they were worried I may have had a transformation into a higher grade lymphoma somewhere (or a hidden source of infection). So they did a PETCT. Fascinatingly ALL my nodes lit up a bit and they were almost all on the upper limit of normal size (10mm). It may be that tho small the cll was growing rapidly even then in the nodes and hence I was fatigued. At that time my lymphocyte count was less than 20,000.

You mention being fed up with tests. Get this. Now you have CLL get used to tests. I have had almost every test under the son as they look for possible infections, possible second cancers, possible CLL infiltration (you can get growth in any non lymph organ too tho off course lymph tissue is more common), and to rule out other causes of fatigue or odd pains and other symptoms.

You mention falling asleep and sleep studies. I actually had cll lymphomas of my tonsils and lingual tonsils that I had out surgically when I was still officially stage 0.

In the spring of this year my nodes suddenly were palpable and grew over a few months so they were all between 2 and 6 cm, my lymphocytes started doubling every three months and my fatigue worsened still. I was unable to walk at all without getting breathless and tachycardic and my legs would buckle under me. Cue a whole load of other tests to rule out other causes. Just coz you have CLL doesn’t mean you don’t have other illnesses.

As an MD people will expect you to know about your disease. Understand there’s much even the top cll experts don’t know.

Get yourself to as smart a clll expert as you can. Decisions about when it’s the right time to treat when it’s “only” fatigue are tricky. But you may have to go on long term sick leave. And use whatever energy you can to enjoy life and maybe do some more research. If you are interested in the clinical papers many of my old posts go through the data and link to the papers (click my name to see them).

If I can help in any way possible I will as will the whole community. Where do you live so we can point you in the direction of a cll expert.

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I know about the cytokines. The interesting thing is that in 2008- ish I was thought to have fibromyalgia. Because I felt so bad back then, I rarely went to doctor and my last CBC was 2007. I really wonder now if I have had CLL ALL THIS TIME! I felt better in 2016-early 2018 - and now am crashing. Everyone wants to call it depression and write a script but ppl with depression don’t make massive to do and wish lists. I do have one very stressful event with no good solution ongoing which has been really bothering me for a few months, but the sleepiness predates that.

It is not thes TESTS I mind, it is the unpersonal and uncaring ATTITUDE that predominates these days!!!

I live in Dallas and have both UT Southwestern and MD Anderson as close options.

I did have a CT without lymphadenopathy in 2/18 when diagnosed (after routine CBC)

Thank you Adrian ... I DO need help.

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I thought that my local care would be good enough but became frustrated and self referred to MD Anderson. Had the best conversation I’ve ever had with any doctor (a Lymphoma specialist) who then sent me up to the 8th floor (Leukemia) for another consult that was equally fantastic. I believe these doctors will connect me to the most current technologies and trials available when I need them. I would encourage anyone that doesn’t have high confidence in their current provider(s) to keep looking until satisfied.

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What I’ve learned over 6 yrs on this site is fatigue doesn’t naturally correlate to the ‘numbers’. We have members at very low levels on W&W with crippling fatigue which is quite different to being a bit sleepy or life associated burn out. What I’ve also learned is that they simply don’t know why and there’s a dearth of research or even recognition in some medical circles as to this phenomenon.

There’s a belief it’s related to errant cytokine activity and the sick response CLL creates which can give a sense of having underlying cold symptoms which drain energy.

CLL experts seem to be in no doubt as to its existence however and it’s a constitutional symptom with potentially devastating implications for CLL’ers trying to work and care for families. Fatigue which limits excessively can be a reason for treatment and some doctors will treat on that basis even at lower levels.

I was never badly affected by the kind of fatigue some members describe but there’s times I wonder if I’ve just assimilated this as the new norm.

Why medics needs to be convinced is beyond me. Why would they imagine thousands of sane, otherwise healthy individuals would want to waste their valuable lives asleep when there’s so much else to do?

Sorry I don’t have the answers moxie and I’ll be surprised if you haven’t explored all the other possible culprits like Vitamin deficiencies, anaemia, sleep apnoea, thyroid problems etc etc.

We were typing at the same time Adrian! 😊

Best Wishes,

Newdawn

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Thank you Newdawn. At first it was fatigue in the afternoon, but I was still able to run an errand or two. Now I rarely have that energy. I did Sunday for some reason. I have not been able to work since 2008. Who would give up their profession and be broke just for grins?

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Newdawn

I might add that this past week (except Sunday,for some reason) I have really felt at rock bottom.

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I have fatigue as well, but I’m still required to work full time to survive. I’m at Stage one with lymph nodes in my neck. I have found that investing in B vitamins have helped with the fatigue.

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I could not work if someone put a gun to my head lol ... I want to ... but the most I can do is sit and do things on internet for a couple of hours. No standing except for minutes at a time. I went to Walmart today for about 45 min - now I can barely move lol.

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I understand. I also have Sjogren’s and arthritis and back issues. It’s hard at times. I hope you get some of your energy back. You are in my prayers. 😊

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Well i am stage one ALC runs 16 to 20 and it it has certiny beat the crap out of me

Due the CBCs for a different reason every 90 days i know within 90 days when CLL happened as ALC went from its normal 1.4 to 10 during 90 days from 2013 to 2014 were it stayed and had no real effect until March of 2016 when i started to have multiple problems with things like suddenly becoming allergic to everything outdoors and started getting hurt very easy

In December 2016 my foot would not heal and i did one last 50 mile trail race in April 2017 and after all that time of stability the counts jumped to 20 in about 7 weeks and have again stayed there for a good 18 months

In general i can't do anything i use to do and i use to do a lot as it's not easy to put in 50 miles in your 60s and showup for work the next day

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My WBC is 41K and 3 months ago my ANC and immunoglobulins were normal.

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Tell me when was it 20K? Months ago? A year ago?

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WBC was 39, 500 when first diagnosed in 2/18. Dropped to 30K in 3 months, now 41K.

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Well that’s good news at least. I was wondering if your counts might have been going up quickly. Honestly I’m pretty convinced you should go to MD Anderson to discuss all this. For sure you want to check other possible causes. Especially sleep apnoea. But don’t let anyone tell you again that CLL at early stage can’t cause your symptoms.

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Moxie, I agree you should see a cll specialist. If I lived in Dallas, I would still go to MD Anderson in Houston. They have a whole department of cll specialists there. I could not be more pleased with the professional and compassionate care I get from my specialist.

It could be semantics, but for me falling asleep too easily and fatigue are two different things. I do think fatigue is associated with cll, moreso with later stages, but staging is no science and everyone is different with their cll so its hard to speak in absolutes. Some people with fatigue have problems getting to sleep, others do sleep a lot.

In general I think of fatigue, night sweats, fevers and weight loss as b symptoms indicative of later stage cll we get as we near treatment.

Who knows when your cll started. If your tiredness started in 2008 and you are still stage 0 today, if it was your cll that started in 2008 that would be at least some indication your cll is of a more indolent variety. I started treating two years after diagnosis.

A wbc count of 41k at diagnosis would certainly suggest you have had cll for a while. Mine was 55k at diagnosis and I have always wondered how long I had cll before my diagnosis.

I would definitely see a specialist. If your sleepiness is related to cll, that might be a factor in deciding when to treat. I do think the amount of sleepiness you describe would be the exception and not the rule for true early stage cll, but my cll has caused some outside the rule problems for me for sure. Good luck. Let me know if you want any suggestions on doctors at MD Anderson. There are some great ones there including but not limited to Wierda, Keating and Thompson. They can answer your question best. -the other person- lol

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Thank you for your reply. My current oncologist is with Texas Oncology. We talked about second opinions and changing doctors openingly. I said at Stage 0 W&W with my FISH it sounded ‘garden variety’ and she agreed. This location is about 5 minutes away from my house. If they are not going to do anything different yet, I am reluctant to go spend big bucks on a second work up yet. I turn 65 in April. Hoping to make it until them.

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Hi, moxie ~ I, too, have experienced pretty significant fatigue at stage 0. You may be interested in the CLL Society's Expert Access Program. It's a free second opinion with a CLL specialist via video consultation. Link below. Best wishes!

cllsociety.org/cll-society-...

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Thank you

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I’ve just posted this in reply to another sleepy member. Not sure if this helps you.

Hiya, that level of tiredness may be due to sleep apnoea, especially if you are a snorer.

Try this self assessment tool and get referred if you score high. When answering the questions there is also a ‘high chance of dozing’ answer, need to scroll down.

britishsnoring.co.uk/sleep_...

Best wishes, jackie

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I do not have sleep apnea, but have some RLS which I don’t notice and very little REM sleep - both found on sleep study in 2007. No rx. Need to probably repeat it.

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Have u checked the TSH? >>> thyroid stimulating hormone

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Yes, I take Synthroid .1 mg/day ... dating back for years.

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Synthroid

comes in mcg. Never heard of 1 mg When was your last blood test to check for TSH? Do u have dry hair and eyes?

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wait, what? YES! ???

i think i tried Synthroid once. probably had some side effect, i forgot.

but they tell me my "thyroid" is ok???

(and i have skin problems...dry...might even bleed a little. face, head, chest, arms, legs.)

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Synthroid .O1 mg or 1mcg for YEARS. TSH in 2/18 My hair falls out some but no dryness. I have had mild hypothyroidism for 20 years and never had many symptoms - just found on labs.

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You need to have your thyroid levels checked. They have to adjust my medication level after a blood test. That is if you not having it checked say every 4 months.

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Moxie: In your first post you stated you were going to work on wt loss, optimal nutrition, mild exercise.

Would it help you to talk with a nutritionist about those goals? It can be mentally/emotionally defeating when we have to do lists and never get the first one done. Sometimes having a "partner", even if we have to pay for the partnership, can help us get started to meet our goals.

A balanced diet can help with our penchant to eat too much of one kind of food.Carbs are one we turn to too often for comfort--so, we can get a burst of energy and then a drop in energy. If we do not eat with some regularity, we can get the drop in energy. Proteins are important for energy. It takes a balance of all the food groups for health

Too much lack of movement and we have the possibility of diabetes esp. as we age.

I know, I may be way off base, but it helps me to get out of the house if I have an appointment. And when I get a to do item checked off, I feel lighter and ready for the next item.

Best wishes for a turnaround in your energy.

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You are absolutely right ... but I make appointments for various things and them cancel them because I am too fatigued to shower and get ready. My nutrition is good but my exercise is nonexistent at the moment. Everyday, I say I will do better tomorrow and then don’t. I am really at a loss as to how to break this cycle.

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egg zactly.

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I am on ww 5 years. Next month I will be 80. Walking is slow, I bike. An electric one. I visit haematology at 4 monthly intervals. I have a life long habit of day time sleeps and experience fatigue. Got to adapt, play tennis once weekly rather than 3. Take on new interests, I bought a dry suit for paddle boarding, less walking involved. muscles get exercised struggling on and off. Try a massage and forget cll.

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I am impressed! Way to go

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It is for me as my body is working overload. Cannabis oil worls very well.

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What specifically does it improve for you?

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Sleep

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i feel just like you do, just want to sleep.

same "stage."

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What should we do to feel better?

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Hi! my Dad passed away in 1968 with CLL. We lived in Hong Kong until 1965. There was very little treatment unlike today and we really need to be grateful for the hope we have for the future. Iv had CLL for 18 years, had chemo, remission and now nearing more treatment. Iv always had some fatigue but nothing like I have now. I do doze in the afternoons but not every day and often take ages to get to sleep at night. We have to rule out everything else before we can be sure its CLL. When did you last have thyroid levels tested? Blood sugar etc. You do sound depressed. Have you family or a friend who would help you and take you to appointments? There is something very wrong if you cant shower and go to appointments. If it is the CLL causing this then you do need a CLL specialist. Originally mine was really low when diagnosed and at 8 yrs it was similar to yours. 13 months later it was 120 and started progressing. I had to start chemo. Please get your tests done for everything because doctors cant take you seriously if you dont keep persisting. I hope you get help and answers, Anne

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Thank you for your reply and suggestions. Yes, I know it ‘sounds’ like depression which is what docs want to say and be done - but it is just not like that. All my tests (glucose, etc) were done in 2/18 and my last CLL tests (every 3 months) were just done a few weeks ago. I am going to try a few things.

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Its a terrible way to live. I feel so sorry for you. I feel sorry for myself because Im so fatigued I feel ill. At least I know that I will be treated and why Im like this. I didnt think your problems were caused by depression but that they have made you depressed. Iv had surgery on my back and I cant walk far without pain and fibromyalgia causes pain as well. Im praying treatment will help my fatigue because I cant even enjoy a holiday. I have a lot of help at home and you could do with that as well. Lets hope you can find a solution, Anne

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I am sorry we both have CLL and FM, but there are worse things always.

I may have evolved into a bit of depression these past 2 weeks, but that is NOT my general condition.

My ONLY family member is my 22 yo dtr who resentfully choose to move here - I pay for everything until she finishes school - but unlike before she does not help me at all. I thinks she fears if she does, that she will be an enabler to me getting weaker. Because this fear is deep seated, she overreacts with hostility and anger towards me which is making things worse.

I think a free ride financially is worth a cup of coffee or 30 minutes here and there helping me clean etc - she feels I would have been paying for everything had she still been away - so what was supposed to be cherished time is filled with bilateral resentment and is horrible. I will try a bit of counseling but given that “she is right” at this age - I am not too hopeful.

I will overcome this - just have to force myself to start tackling the mountain.

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This is a common story. Many parents want to give their kids the things they didnt have themselves. Set them up with a great education etc. The prob is that they dont know what it is not to have it. They think we are always moaning. When I needed back surgery I had to get a cleaner. 2 hrs a week. Its wonderful. I tidy and keep bathroom clean and leave the rest to her. Worth every penny if you can afford it. You wont need to ask for help and maybe make friends with your daughter. She will be shocked if you dont mention being ill. Your daughter will mature but best not to make life too easy. My kids did newspaper delivery rounds for pocket money and it gave them a work ethic. Sorry to sound bossy, Anne

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No problem ... it is complicated by the fact that we lost her 17 yo sister in 3/16 ... we are doing amazingly well, all considered.

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I am constantly complaining about being tired. I went to the doctor......got diagnosed by thyroid cancer, got that sorted....still tired.....saw the doctor.......got diagnosed with sleep apnoea, got that sorted....still tired.....saw the doctor......got diagnosed with menopause, on HRT now........still tired......saw the doctor.........gonna check out my heart. Who knows why we get tired, but I feel like a really old woman at 54. Stage 0 . W & W 3 years. Someone mentioned Ritalin but the doctors said they had never heard of anyone getting that for our tiredness. I could start treatment for tiredness alone but I am reluctant to do that, feels a bit extreme. I think it is fair to say it is part of our condition......we just have to put up with it.

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I’ve experienced fatigue for a long time before my April ‘18 diagnosis. Saw my internist for the chem panel and stress test- couldn’t find anything amiss til April. I’m early stage wnw. Only thing they could find to blame is lifestyle. I’m a DDS who teaches in a med/dental school and have a 1hr door-door commute. Prior to this was in private practice for several years.

Since diagnosis I’ve tried three things that I believe are helping me with the sleepiness and physical tiredness. Two on the advice of my physician (Dr. Thompson) at MDA,and the third from literature. First, commit to exercising an hour a day or at a minimum several hours a week. For me that means mountain biking. Second, adopt a pescatarian diet with plenty of green leafy vegetables. I eat more spinach than popeye with shaved parm, olive oil and fresh garlic. Steelhead has become one of my all time favorite foods. Third, I take 800mg of EGCG per day with a quarter tsp of crushed black pepper (piperine improves bioavailability) and 200mg VitC (also improves bioavailability). In the Mayo studies on EGCG, they took much higher doses (2g bid); but liver enzymes can go nonlinear on you so while in wnw why risk it? I’m a data point of one but with unfavorable cytogenetics not comfy with watch and do nothing. One or more of these or perhaps all taken together have really helped overcome my fatigue. Hope and prayers it may help some of you all!

-G

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G

Thank you for your spot on reply ... I am doing the diet and EGCG but have not felt up to the exercise. Plan on just MAKING myself do it unless I fall in the floor lol for about 2 weeks and then reasssess. I have a wonderful facility to utilize - just gotta get there.

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Tell you what... I’ll shame you into it if you agree to hold me accountable. It’s easier said than done! God Bless!

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Mutual cheerleaders? Positive reinforcement is better than shame but accountability is GREAT!

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Moxie,

The sleep is part of the whole fatigue thing. Most of my life I slept poorly, less than 6 or 7 hours a day and usually less and did fine. After CLL I sleep great, but if I allowed myself could sleep 25 hours a day....still wake up ready for a nap.

It is definitely CLL. I am sorry this is happening to you

Scott

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Scott

Yep ... you describe it perfectly. Poor sleep before ... now, nothing but sleep lol. My plan is to push myself for 2 weeks and reassess.

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I don't know if it's having CLL or being a relatively new CLL patient. I find myself being extraordinarily tired these days, but I realize it's likely depression if anything. All of a sudden (about 5 months ago) when I was 65, I got diagnosed with CLL, Hypertension, possible kidney problems, etc. I have been a power house until all of that hits me. Now, I just want to lie down in a dark room and go to sleep all the time. It causes problems in my marriage - everything.

I think (it can be) the nature of the beast. We are generally humming along in life and all of a sudden we are thrown into this CLL world where we have no idea of what is going to happen next - just a lot of "what if's." Often we are diagnosed for other problems because we have neglected medical care and these things creep up as we get older. Perhaps it's my situation or not - but I can't even get proper medical care when I go seek it.

So it would be commonplace to say, "oh .... I'm not the person I was anymore" and just want to crawl into a hole. I've seen lots of people here in all stages of this. I notice it because I feel the same way. I can barely post here these days. It's not the concept of CLL and cancer and all of that - but rather the concept of getting older and coming to grips with the fact that I am not a kid anymore. That too, I see a lot in other people's posts - they just don't post often.

I think that it's likely a lot of people here have felt this at one time or another. Life always had this "flow" and now it hits a brick wall and we have an "old person's disease." It bums me out just thinking about that. I don't know - am I projecting, or do I see this here?

If I am wrong, I'm sorry!

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Don’t be sorry - we have to dig into our minds and hearts to figure all this out. I have a strong faith since loosing my dtr in 2016, so I don’t think it is the get old thing (unless I look in the mirror lol) but I will certainly reflect on that. I wish you well on your journey too ...

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You can get tired when only in the W and W period. That is how my doctor discovered I had CLL. I complained how I was so tired and needed a nap in the afternoon so he did a blood test as he suspected CLL and that was over 8 years ago and I was on W and W for the next 7 years but last year needed some treatment. I was tired all through that 7 years and even now. Sometimes I may have a spurt of energy but that does not last long. I am a pharmacist with medical experience like yourself. There are no rules with CLL. Different people have different symptoms and different times and one of the common denominators is high WBC., So you may very well be tired from the CLL

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Thank you for you input. I am trying to sort out my particular situation, take some action steps and depending on the results ... decide from there what I should do next.

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My blood work was done one day and my white count showed as 14 so my MD sent me to an oncologist they took 13 vials of blood and came up with CLL as a diagnosis I have been on wait and see since then. Recent blood test with my regular MD without going into all those other things that most of us can't even pronounce is wbc 104. That is 10 times higher than normal and my oncologist suggested I would probably start treatment next month. ( Last visit with her it was 82) And as far as fatigue and sleeping goes that has been something that is a real problem for me. It wasn't in the beginning but I'm at the point now I cannot get through a day without having to take at least one nap. Even if I stayed in bed for 10 or 12 hours the night before. I call it going brain dead as I'm feeling right now while I'm typing this and I got up about quarter to 8 it's now quarter to 11. If I go to sleep again now I probably sleep for an hour to an hour and a half and then around 5 or 6 sleep again for another hour and see if I can stay up until midnight. So the chronic fatigue and sleeping is a symptom but I would think as others have said that seems kind of odd if you're at stage 0.

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I feel like you describe ... multiple naps. From all the relies, I have a 2 week plan to push myself a little bit and see what happens as well as check a few more things - then reassess. I wish you well with your treatment - many say after they get thru it that they feel SO much better.

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Good day, this may sound kind of out there but, for me if I sit down especially around 3-4 or read I get very sleepy. As long as I'm moving sleep stays at bay. God Bless

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Nothing is ‘out there’ in my opinion as we try to sort thru this. I am not a GAMER at 64, but dabble at 2 games now and then. I do notice they make me kinda sleepy but what I am describing is much higher in intensity than just wanting to nod off. I will try to be more active these next few weeks despite how I feel, and see if that helps.

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I agree with Adrian especially on the increase in frequency and duration of infections. However in my case I had been complaining of fatique for years and finally I went to a leukemia specialist at Froedtert in Wisconsin and she told me that I shouldn't be experiencing that much fatigue at my level of progression. To make a long story short, she had a few tests run and found I was low on testosterone. 9 months later I feel like I'm not sick at all. So at least rule out the other possibilities before just blaming the fatigue on CLL.

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