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CLL Support Association
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Holy Tired

Hello, 50 year old male. Diagnosed with cll nearly 2 years ago. I see cll specialist every 3 months. 13q deleted. W and W. Dr. Not concerned about my blood numbers or my symtom. I have complained about one symptom since acquiring cll and that is fatigue. The fatigue can get so bad that it is affecting my quality of life. Doctor not concerned and had nothing for me. Only advice is to eat better and maybe some yoga. Yoga??? Anyone else really tired? Could this be my cll? Suggestion. Thank you and make it a great day.

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CLL fatigue is now considered a misplaced 'sick' response. Mine was so bad that I was forced on longterm disability in my peak earning years, with two children entering university.

The one thing I found that counterintuitively improved things was twice daily brisk walks... Over two years I lost weight and was in the best physical shape, I could muster going into treatment...

It takes dedication, recently during a month in hospital, it was the one thing I missed the most above all else.. my daily wobble walks... 😀🚶🏻‍♂️🚶🏻‍♂️🚶🏻‍♂️

Give it try...

~chris 🇨🇦

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Thank you. Walks 🚶 do help and I need to lose weigt but it all feels daunting at times because I really need to push myself in which I will do my best at doing more despite being so exhausted.

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Hi Chris, I am curious how brisk your walks are, and how long you go for? I am stepping up my walking (no pun intended!) as I think it’s great for me, too. Thanks!

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Get a medical OK from your GP... before starting any exercise after years of being sedentary...

Pace yourself.

I started with a few steps... no joke ... I had plantar fasciitis in both heals... over a year I went from 5 minutes to 20 minutes daily... by 14 months I was walking up a hill in my daily tour, about 40 minutes a day. I had a small camera and would use it to stop every so often and photograph something, usually a flower, catch my breath.

At 18 months, I had lost a lot of weight about 65lbs, and decided to double down and do two 40 minute walks each day... I never missed a day..rain, snow and I walked all through treatment with RCHOP and FR...every day... went to the hospital by bus, has the chemo immunotherapy and a snooze and walked most of the way home... 👍🏼

I extended my walks and basically added new routes at one point I had 5 separate walking routes, sometimes I would combine them...all around my neighbourhood.

Currently, I walk twice a day in a heated car park... not much to photograph, but I'm under CCTV camera and I tell my building supervisor know when I go and she keeps an eye on me... since cell phones don't function unground...and I'm a high risk for falling.

In the spring I will return to the outdoors, when the risk of falling has diminished... 😋 and the flowers are in bloom...🌸

~chris 🇨🇦

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I lost the most weight I had when doing long walks a few years ago. Right now I try to jog a bit and lift weights but it ends up making me hungry all the time. Long walks sounding more inviting now after reading your post.

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Thanks for the reply, Chris. Good for you for getting yourself to this level over time, and for doing it safely.

I do not show a lot of the disease yet and am still fit. I am active on weekends but recently pushed myself to start walking during the week too because the one consistency I hear over and over for my health is exercise. So far, I have been doing a half hour on the treadmill after work but it takes a lot of effort to get me to the gym. Hearing from others inspires me to do so more easily.

Best, NW

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Hello NaturalWaze

I do same thing as Cllcanada. It has helped me a lot. I walk at 3+ miles per hour. The walking has improved my oxygen intake and increased my RBC.

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Thanks, Dee. I too have been doing 3mph or more, so it’s good to know that that’s a good number and also it’s helpful to know how much the walking has helped you! I need a push to get to the gym after work so hearing these responses helps!

Best, NW

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Dew77,

I am 56 with the same 13q, diagnosed 2 years ago. I noticed a drop in energy also, I still work out and play tennis, but definitely get tired more easily, sleep more and take more naps. I always wondered if I was not accidentally diagnosed would I just think it was just part of aging. I just feel it was not that long ago I had endless energy. I also notice when my mind is not thinking about having cll, on vacation or when I’m distracted I don’t notice my fatigue as much, so I’m sure stress doesn’t help and contributes also. Maybe others that have gone down the road Of w&w can share what they have experinced especially if they subsequentially went through treatments did they get back some of there eagerly levels.

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Thank you for the reply. Just want to make sure I am not the only one and evidently not. I am feeling a lot of stress these days considering my dad is really sick and my 18 year old boy is not doing well also. I know stress can add to tiredness. Maybe this is just a new way of life and I need to work on acceptance and change some of my ways of living.

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Dew77, I am so sorry your father and son are not well. Those situations can bring you down so much. Would it be helpful to have someone face to face to talk with about how you are feeling? You are in a life-changing situation of more than your CLL making you tired to the point of fatigue.

We assume we have to carry the load by ourselves when our parents and children are not getting better with illnesses. Please, see if you can find a counselor/social worker-type who will listen to you as you express and let out some of the pent-up sorrow you are carrying.

Often just having that help can let us see how we can carry on with our lives.

Pulling for you and your family.

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Thank you for your resonse and your advice. Thank you for your well wishes and yes I probably need to reach out more than I do. Make it a grear day.

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Dew,

If your Doc isn’t concerned with your numbers or symptoms, why do you see him every three months? It seems that you could stretch that out to at least every six.

My fatigue had lots to do with anxiety and poor sleep. After Chemo four years ago, I felt better and with time and experience, I no longer sweat the small stuff. Good health to you.

Jeff

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Thanks for your response Jeff. I am not positive why every 3 months? Maybe being cautious? I suffer from depression which adds to the fatigue but never been feeling this wiped out. I have sleep apnea and sleep with a cpap machine for the last year and a half and that has helped my tiredness in the morning but most days when the afternoon hits as I work full time I am pretty wiped out.

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Dew,

I tried the CPAP machine and lost more sleep because of leaks waking me. I bought an adjustable base bed, sleep slightly elevated and never looked back.

As for fatigue at work, my solution was strong coffee. Just know even healthy people hit a wall after lunch. That’s why they invented the siesta.

I agree with Chris with exercise. Whenever I’m active, I feel better and stay off the forum. I’m now walking 2 miles a day in the mountains with my wife. I’m trying to get in good shape heading for treatment soon.

Jeff

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I had a CRAP machine, for over a year, slept like a dog with his head out a car window at 60 mph... masks never fit right and were hot and uncomfortable... very expensive with a high failure rate.

I had a very bad night, went out and got a sledge hammer and dispatched the CRAP machine... I slept like a baby ever since... 👶🏻

Sleep apnea is a silent killer, but at that point I didn't care, it did nothing for my fatigue or my sex life, but make it worse.

~chris 🇨🇦

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Chris,

You mean the Darth Vadar look didn’t rev up her motor? 😂

Jeff

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Hey CLlCanada.. I to have sleep apnea and been using a c-pap for about the last five years. Just got an oral device, very expensive if you don’t have good insurance, that works to extend your lower jaw to open up your breathing air waves. My son-in-law has used this oral device for three years with great results. Had mine since November 2018 and still not sure it’s working for me yet. The dentist who fitted me for the device said it could take as long as 6 months to see decent results. So for everyone who hates their CPAP machine this could be your answer. Hope that info helps. Best of luck to all my fellow CLL-ers in finding their best methods.

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I suggest having your B12 and folate levels checked, vitD3 as well, then work with your GP to bring them into line.

Quite common in CLL to have low levels... and B12 is necessary for red blood cell production and it does effect depression...

Easy blood test...

~chris 🇨🇦

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Dew77,

I agree with all of the above; CLL being recognize as the cause of a "sick response", exercise, B-12 folate & D3 checks. Also, given your history of infections (C diff, pneumonia and 2 sinus infections) you may wish to request a test of your IgG subclasses. Below normal scores in a subclass or two can lead to infections & (in my case) fatigue, even if your IgG tests in the normal range.

Jeff is right, continuing quarterly doc reviews in the absence of disease progression for a 13qer on W&W is strange.

Stay strong,

Owen

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Hello Owen and thank you for your response. I had an IgG test and numbers were in range. Can you explain "sick response" not sure I understand. I will stay strong.

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Cytokines... Here Dr. Thompson from MDA a CLL specialist..discusses this with Andrew Schorr of Patient Power...

vimeo.com/164207240

~chris 🇨🇦

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Thank you Chris for the reponse and for the information. Make it a great day.

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Dew,

I am not suggesting another IgG test. You can still have a normal total IgG result and have a selective IgG subclass deficiency in one of the four IgG subclasses that could be the cause of your pervious infections and perhaps contribute to the fatigue.

IgG subclass deficiencies affect only IgG subclasses (usually IgG2 or IgG3), while total IgG and IgM immunoglobulins and other components of the immune system can be at normal levels. Keep in mind IgG2 is 20 to 30% of the total IgG, and IgG3 is a lesser amount of total IgG, but both of the are rich in infection fighting antibodies. Can't hurt to ask for the test.

Good luck,

Owen

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Thank you Owen. I appreciate the advice.

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I was diagnosed with 13q at the age of 50, like you, and got bulky disease within 18 months with doubling lymph counts and got a trial with obinutuzumab and steroids. Got better and am still in remission after 3 plus years although it is slowly coming back. I had crushing fatigue before treatment which I managed with cutting back at work and slowly increasing my exercise load over time. I tested for my black belt just before the trial despite fatigue. After the steroids everything was screwy with mania, too much energy, poor sleep and etc. for about 8 months but then I settled down to almost no fatigue for two years as my disease went into deep remission. The fatigue is now coming back. Exercise really helps as it clears my mind and gets me completely in the moment. I don't feel like a dude with cancer when I'm working out. Yoga is ok I guess although I need a lot more intensity - I like to run hills and I do martial arts daily with sparring and contact twice a week. I think it's different for everyone. I'm not a victim and I don't like the sick role. Getting exercise gets me out of that mindset and I get more energy overall. I feel for you. Hang in. 13 q used to completely suck with essentially no long term treatment. It is now a manageable disease with an excellent long term prognosis. You have to get yourself to a good quality of life. I'm a doc and I tell my patients: it's not the disease that kills you its the diagnosis. You have to get past the diagnosis.

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Great advice. I dont want to play the victim role however my mind plays tricks on me like is this fatigue real or in my head. It is definitely real.

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Great info and re-setting your mind info... just like that old saying..”if u think u can, u can” be positive and believe you will win the fight!

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Do have your B12 level checked. CLL docs don't usually do this so ask your primary for it. It made a huge difference for me to take supplement (had injections for a while).

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I feel tired at times is it old age? I would recomend walking, if you feel tired get up and go I find this get the ciculation going and is a help. Dont give way to tiredness and start napping.

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Good advice.

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I have been a walk leader for the past 8-9 years, health walks are carried out all over England follow this link to search for your local group if in England. walkingforhealth.org.uk/wal...

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Health walk sounds like a great activity indeed. I will look into it.

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I felt like you for a couple of years. Then I switched doctors and while describing my worst symptom, (fatigue), the doctor interrupted me and told me that there was no way my CLL was advanced enough to cause the fatigue I was describing. They ran me through a number of screenings and found very low testostrone. After some amount of time adjusting the dose I started to feel amazingly better. Now a year later, I've got my life back. I don't sick at all. My WBC was 38k at the time. It may not be testostrone but it could be any one of a number of issues.

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There are many reasons for feeling tired. I am and finding out my adrenal glands are part of the issue. I did a saliva cortisol test and my results are withing range, BUT, on the low side morning, noon, afternoon, and high at night. So I will add some adaptagens. Also, while my iron, ferritin, % saturation are not extremely low, they are on the low end so I will supplement with iron. This is all due to Thyroid cancer, but would effect many who did not have T.cancer as well. Also the tests the doctors routinely do for thyroid hormones miss the mark. You may have enough thyroid/cortisol/sex hormones in your blood, but they are not getting into your cells to provide energy. In this case, MILD exercise is good but too much exercise can backfire.

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Thanks for your response.

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Thanks for the response and I will have that checked out.

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I am 64, diagnosed 1 year ago, on W&W too. I have SEVERE fatigue and sometimes stay in bed for several days or miss appointments because of it. I make lists of things I really want to do, and then do not have energy to do them. I take B 12, D3, ECGC, turmeric, and polyphenols. I do not have depression as many think.

Seeing new doctor this week. Hoping for a new plan.

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I get it. It does not feel like a little tired. It feels like I could sleep most of the day away. I am sure it will get better at some point. Hang in there.

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Yes, always. Always fighting fatigue. 5 years W&W, headaches and fatigue TRY to run my life. I try to stay on top of it by not doing too much OTC pain meds, caffeine.

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I get it. Is it cll or something else or a combination? I will tell you 2 years ago I had much more energy than I do today. My migraines are worse today as well. Doc says nothing to due with cll and attributes it that a lifestyle change would make a difference. Hope they are correct. Make it a great day and I understand how you feel.

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Constant headaches were the reason I went to my general practitioner and the first place. After a blood test she directed me to an oncologist where I had a bone marrow reveal the CLL. And as my numbers increase it seems the fatigue is more and more so I make it more of a point to stay active as high of level as I can take.

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Hi,

I was diagnosed at 52, the only symptom was fatigue. I thought perhaps I was menopausal or depressed, nope it was CLL.

The two things that I did that made a rather significant impact was exercise and eating super clean.

After getting clearance from my general practitioner, I began walking a very small distance. Over time, my distance increased. Now I do between 45 minutes and one hour on an ARC Trainer, walk 4 miles and lift weights 4 times a week.

It doesn't matter where you start. It only matters that you MOVE. I am someone who absolutely hated exercise. If I miss one day, I actually miss the exercise. It helps me physically and mentally. Worse case scenario is that whe or if I get treatment, my body and mind will be strong.

You can do this!!!!

Sandy

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Sandy, thank you for the encouragement. I must admit I do not excercise as much as I should. When I push myself and take a long nice brisk walk I do feel better and then the exhaustion kicks in. Also, if I overdue it like play 9 holes of golf I find myself tired for a couple of days afterwards. I will work on changing my lifestyle and my attitude as it may contribute to my fatigue.

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While it doesn't sound like you are at quite the level to require treatment to hopefully alleviate your fatigue, remember that severe fatigue IS a documented reason for starting treatment. You do need to explore all other avenues first and I'm glad that you are gathering helpful, useful replies which you are following up. Hopefully that will make the fatigue at least more bearable.

I can't emphasise enough the importance of gradually improving your overall fitness and resisting the temptation to overdo it when you do feel good. I was very fit before my diagnosis. I used to cycle commute nearly every day to work - about 5,000km or 3,000 miles a year and I'd race buses along the way. My crippled immunity with CLL brought with it a CMV infection that knocked me down and I suspect even further lowered my immunity, so I was regularly feeling under the weather from fighting infections. It took me about 2 years to slowly reclaim most of my fitness. Until I corrected a low vitamin D count, I just couldn't exercise enough to actually improve my fitness - I'd wipe myself out for a day or three by overdoing it.

Another technique (work and family responsibilities, etc permitting), is to just do what you can when you can and take a nap whenever you need one. You'll be more productive and enjoy life far more than having to fight a battle you just can't win at the time.

Neil

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Thank you Neil. I will rest when I can just working full time and raising two teenagers can be exhausting. I will remember to exercise in moderation but not overdue it.

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100% agree with every word. Well said, Neil!

Naps are my best weapon for coping with fatigue. Take 1/2 hour to recharge and then the walking etc is a joy rather than a trial.

Nick Pitsonis

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I've asked for thyroid and ferrin blood tests. These don't show in full blood count. My iron reserves (not haemoglobin ) were low. Starting to feel less tired now on iron. In 10 years of having CLL on w&w and complaining of feeling exhausted all that time, I've never been offered these tests. I'd definitely ask your doctor for these tests

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Thank you for your response. I will ask to get tested.

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When I was first diagnosed my consultant said to me"If you are going to have leukaemia the best option is CLL" and then he said" If you have CLL then the best deletion is 13q, it has the most advantageous outlook with fewer complications"

You are one of the lucky ones, I would not worry too much about your fatigue unless you are anaemic and that is easily solved.

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That is good news. Thank you for your response.

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Dew77,

Bouts of insomnia and fatigue have followed my CLL diagnosis. Interestingly enough, I just started yoga. I am learning that there are a wide variety of classes. My current favorites are gentle yoga, yin yang yoga and restorative yoga. These all rejuvenate me rather than wear me out.

Another thing that has seemed to help my fatigue is the sauna. I was on vacation, did a sauna every day and had much more energy. I am heading this week to check out purchasing an infrared sauna. If anyone has experiences with saunas-I would love to hear them.

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Thank you for your response. I will look into yoga and trying out the sauna.

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I too am 13q deleted and sufferred from fatigue as my only symptom (besides my escalated WBC) although I sense my fatigue was not as severe as you describe. My understanding is that one of the treatment indicators is when the disease affects the quality of life. Have you considered seeing another CLL specialist for a second opinion?

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I have not but it would not hurt. Thank you for your response.

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My doctor told me the same, he said being fatigued had nothing to do with cll. At this stage. I was diagnosed exactly one year ago. My main reason for going to the doctor was because of fatigue. Omg so frustrating for sure. It's like they dont listen.

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Frustrating indeed. I have been told that fatigue is a symptom of this disease. I think the doctors just are not sure how to treat it. You would think the docs could at least acknowledge it. We are not making this fatigue up.

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Diagnosed at 42 with Cll, w/w . just thought the sudden fatigue was a part of aging. Have always been fit, active and a healthy eater...

it has been life changing for me..

fit, walk daily, yes green and turmeric tea....

it’s very frustrating... I am not sure if there is any lthing else I can do to fix my lifestyle...

46 now, and the fatigue is the most challenging thing to deal with... and it is frustrating when no one knows what to do.. more juicing has not made a difference, my Dr. Says, yep, that’s how it is....

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I'm also looking for a second opinion.

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I was DX 9/5/17 and 13q w&w. I have found doing small task and not plan a full day. I feel better when I work. Crazy I think lol. I work 12 hour night shift as an RN. Must just stir up all those bad cells. I think a light exercise would be good but haven’t started that. I do know that if I stay in bed to long I feel sicker. I can really feel it when staying in bed to long. Best wishes!

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Working is good and takes my mind off of disease and gives me energy but most days I fizzle out and hit a wall around 3pm.. Staying in bed will only lead to more tiredness and depression. Thank you for your response.

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What is exhausting is having to act like you’re not exhausted....

- Bobby

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Agree. Thanks your response.

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