CLL Fatigue

[MSCarolyn62]

I am on W&W and constantly tired. How does it occur ? My bloods are good only increasing in white lymphocytes.

[AussieNeil Partner Administrator]

It's thought to be the cytokines (messenger proteins), from the actively dividing CLL cells in your nodes, spleen and bone marrow that cause the feeling of fatigue - like coming down with the flu. CLL cells in the blood are in their dormant state, which is why there's no correlation between lymphocyte count and fatigue.

If you can manage it, exercise, even if it's just going for a walk, can improve CLL related fatigue.

Neil

[BCWestcoaster]

Your question is one that comes up so many times on this forum - MSCarolyn62 and AussiNeil consistently and very patiently responds with a great description of the mechanism that is thought to explain our fatigue even when we are on W and W and our hemoglobin levels and so on are within normal limits.

I have paid close attention to the forum posts on fatigue and my general, sense of what I’ve read is that describing and managing fatigue is not an absolute science - how we feel fatigue and how we respond to different levels of CLL-related fatigue vary greatly among us as do the strategies we use to manage it.

I have been on W&W for 8 years and my strategies have changed as my CLL (and perceptions of fatigue) progressed. While I could go to the gym in the first years, I now go for walks on the beach with the dog. I used to go everyday, now I go every other day to the beach and for shorter walks in the neighborhood on alternate days.

I used to work 12 hour days- now I work in 3 to 4 hour blocks (I’m fortunate to have a flexible work schedule) - and only 2 blocks a day max. On fatigue days, it’s 1 block. I need an income so to continue working, so instead of working 5 days a week for 12 hours, I work 6 days on my rotating block schedule. I used to travel internationally a lot - now my colleague has taken on this role instead. I was a workaholic in past and thankfully society and most employers now accept we can work a reasonable work schedule. This is a good change!!!

If I need to sleep - I do - sometimes for hours in the day if need be - not what doctors like to call good sleep hygiene because I will sometimes wake in the night. However I don’t stress about it - I just relax with no screens on to wake me up more. Occasionally this doesn’t work so I deep clean my kitchen which for me is a reason to want to go back to bed and sleep.

I now eat in small amounts - if I have a large meal my schedule just gets thrown off - I make sure the room is dark - not lit by a street lamp. I’m cognizant that just like my granddaughter- I am most susceptible to fatigue in the late afternoon so I make room for this. I drink hot lemon drinks instead of caffeinated drinks.

All these little strategies are just those that work for me- I found a ton of ideas from others on this forum to try but at the end of the day, I just listen to my body and try to do what it wants if I can. If I had children to look after everyday or if I was a lifetime runner/athlete, I’m sure my strategies would be very different.

It took me some time to accept the changes in my life , but now that I have, my stress is greatly reduced and I find Im rarely frustrated with fatigue - and I have a full life - I see my granddaughter and family often, I go out with friends - life is good.

I don’t know if this helps - it’s only my story - this forum has many stories that members have shared and they’ve all been helpful to me to understand my own challenges better and how to address them the best I can.

Best

Maureen

[opal11uk in reply to BCWestcoaster]

Brilliant, it's so good to read someone's coping mechanisms and a way of dealing with the cards that have been dealt......there's always a way, we just have to find it. Well done and continue to get the best our of your life, like you I believe life is for living, just find your way to get the best out of it xxx

[PoisonDwarf in reply to BCWestcoaster]

Hi BCWestcoaster,Thank you for posting, I really appreciate it and congratulations on finding strategies that work for you, it's a tough road and I admire your persistence. 🙏

I have learnt that acceptance is key, when to keep pushing through fatigue & pain isn't an option any longer as it only exacerbates both. I get that it's not a failure on my part, more about accepting a changed reality. Dealing with the frustrations is an issue still. Maybe I treat them as personal demons, invite them in & get comfortable with them. Onwards and upwards!

Thanks again for your post, a reminder that it can be done. ♥️

Lynn

[LeoPa]

What kind of healthy eating diet are you into?

[MSCarolyn62 in reply to LeoPa]

Hi LeoI have shut down and managed MS for nearly 25 years with fresh, fruit, vegetables, no red meat and lots of fish, nuts and seeds. I rarely eat chicken and never processed cheese.

As an athlete, fitness enthusiast, naturally I was sensible therefore little if no alchohol and lots of water, especially hydrating in a hot clumate. Keeping my body reasonably cool and slim helps but the main bonus is to minimize jount and muscle pains as we age.

I have continued this regime happily when being diagnosed with CLL but it has motivated me to find the balance in life as I am slowing down significantly hence my request for more information on fatigue.

I listen to my body, particularly taking additional vitamins and minerals, vit D B12 monthly injection and macrashield for my eye health as sight was first lost in an eye diagnosing me with MS.

Finally, I attended a CLL conference in Liverpool which was most helpful. Cheers Janet x

[LeoPa in reply to MSCarolyn62]

Thanks,that sounds similar to the Terry Wahls protocol. Quite amazing how you managed MS. Best of luck! Leo.

[ChristyAnne_UK]

Me, too. Annoying, isn't it? Still, things could be a lot worse, so I'm counting my blessings!

[PoisonDwarf]

What an incredible attitude MsCarolyn62! I have a deep respect for that & managing to maintain it despite any obstacles. Congratulations 🎉

I am definitely in the glass is half full camp, embracing control of what I can & letting the rest take care of itself. I'm still a work in progress but that's OK with me. I am grateful I'm no longer a spring chicken, despite when those sneaky frustrations appear from time time to let me know I haven't quite burnt away the Superwoman cape permanently. There's always hope though and perhaps there's vestiges of it I still need at times. 🤷 Inner peace is vital.

Be well.

Lynn

[scarletnoir]

I suspect everyone's way of dealing with this will be different...

Fatigue was one of the first symptoms in my case, along with swollen neck glands... I'd come home from work, and nod off on the sofa any time after 6pm... Life wasn't much fun. As it happened, my CLL developed rapidly and I was only 5 months on W&W before chemo became necessary...

That was rough, BUT the upside was that once I recovered from the chemo I wasn't fatigued any more, and felt more or less normal (minus, maybe, some memory cells!). I'm impatient with my body if it doesn't do more or less what I want, so that suited me fine... I was always a bit baffled by patients who seemed to seek to delay treatment as long as possible, but we're all different and think in different ways.

I don't know the medical reasons for not having treatment fairly early... or are they only financial? You might want to look into that - or one of our resident experts could maybe comment (I'm no expert). In my case, even if it had not become urgent I would have pushed for treatment as opposed to years of fatigue. But there may be good reasons...?

[AussieNeil Partner Administrator in reply to scarletnoir]

Several clinical trials over the past decades, both for chemo and targeted therapy treatments, have found no life expectancy advantage from starting treatment earlier than current guidelines recommend. There are a few reasons for these findings, such as the risk of running out of different drug class treatment options, should drug resistance develop, plus an earlier risk of death from the increased risk of infections and adverse events during treatment, as well as the fact that about 30% of us never need treatment. It's an ironic contrast for those who protest about Big Pharma, then pay for treatments that have a 70% chance of not being needed, from providers who offer unproven alternative treatments.

MSCarolyn62 if fatigue is severe enough to significantly impact daily living, CLL management guidines do recommend treatment - but unfortunately, there's no guarantee that treatment will resolve the CLL related fatigue.

Neil

[MSCarolyn62 in reply to AussieNeil]

Dear NeilThank you for replying with knowledgeable information again.

I have no intention of having chemo early and feel fortunate to share my experiences with a specialist who understands my diagnodis of well managed MS and CLL. I also have a brilliant relationship with a GP and old friend pharmasist who keep me grounded, respecting my determination and acceptance of the curve balls we are dealt in life. I appreciate the support shown in rrsponding to my query. Cheers Janet x

[scarletnoir in reply to AussieNeil]

I don't question anything you say, as your knowledge far exceeds my own.

This was more about 'quality of life'. I have read many comments on this forum where people are clearly suffering significant damage to their QOL, and complain about having fatigue 'for years'.

I am not a patient man. I could not have put up with it. Given the choice between a treatment which had risks of death (small but not zero) and spending my declining years on the sofa, I'd have been up for the gamble - not that this applied in my case, because the CLL advanced so rapidly that treatment was urgently needed. And - with luck - I got through it (despite neutropenia and 9 days in the ICU).

Others have a different psychological make-up and priorities. Each to his own. We have to take on board the best advice available, and then choose what is right for us as individuals. My post was not intended as 'advice' to anyone, but simply to express a particular perspective.

Of course, your point that there is 'no guarantee' that treatment will get rid of the fatigue is certainly one that patients should take on board. I was lucky in that respect. I should point out, though, that it takes a long time to recover from chemo, so there is no overnight change. Whether the fatigue is the same or reduced after treatment can only be properly judged after maybe 2 years (IMO - at a guess).

[Pin57]

Hi MsCaroyln - Have you ever had your thyroids tested? Reason I bring that up is I’m too in W&W, have been for past 4 years n the ole fatigue issue came about for me recently and so hey blame CLL?! Right?

I admit I did, lol ... but my CLL specialist doc gave me the same talk as AussieNeil’s reply. N he had seen my PCP was getting my thyroid tested per some recent lab tests, since my albuim, protein, n calcium levels had “out of nowhere” started tanking. What the heck right?

Yep n my PCP doc found out I had hypo- parathyroidism (that’s a mouthful long word) n apparently that can cause fatigue. Also can cause other weird stuff like edema (fluid buildup) suddenly cropping up in my legs, crap !!!… my once skinny legs were turning into redwood size logs.

So on advice from my CLL doc I’m seeing an endocrinologist today (took 4 months to get an appointment!?, huh?) to discuss all this stuff and see what she can do to “fix me” and my fatigue.

I admit I’ve neglected my own health since having spent past 4 years heavily caregiving to my late wife who unfortunately was dx with Stage4 cancer.

Anyways, point is suggest look outside the CLL blame game for your fatigue reason and one possible area to check is your thyroids.

Learned that those little guys are very important n if they are not functioning well, crap can happen, including fatigue like symptoms.

Good luck finding your source of why you’re feeling fatigued and how you can beat it.

Danny

[MSCarolyn62 in reply to Pin57]

Thanks DannyI am sorry to hear of your loss and know that in caring for others we can forget to look after ourselves.

I have spoken already with my GP re thyroid levels. Best wishes for your appointment and yreatment plan.

It has often been the case that I have been told previously, 'Oh that's your MS or CLL.' In fact, I wrote to both specialists initially, asking for them to respect me holistically when jumping to medical assumptions. I also have a living Will, too. More importantly, to consult with each other to improve patient care has been my mantra. Fortunately, my GP is very aware and knowledgeable so I control the monitoring. As a ex Headteacher, I take responsibility and I am constantly impressed by others like you, who look after themselves and others genuinely care for others. Regards Janet

[pete-paz]

seems like a lot of info on this and described pretty good in the responses. when i was first diagnosed (W&W a little over 1 year now and i am currently 54) my oncologist asked if i was normally tired/fatigued? my response- i get up at 4:30 am to work out (3-4x a week), i work normally 50hrs per week but can be as much as 60. i have kids and grand kids that i do things with, play basketball once a week and play golf on Sundays so what would you call excessive fatigue?...haha what is your normal routine? were you tired/fatigued before your diagnosis? Do you exercise, if so how often? how is your diet, a lot of processed foods? do you take any vitamins and or have any vitamin deficiencies? all of these tings can effect your fatigue level as well as CLL so you may have to make some adjustments but also need to figure out how much is from CLL and how much fatigue was already part of your life

[CoachVera55]

I can so relate with everything you said from acceptance, having an athletic life & just wanting to stay Holistic as possible. My Mom’s name is Carolyn too & she was diagnosed with stage II breast cancer. She had a radical mastectomy but lymph nodes & muscle tissues were negative, so she refused chemo, radiation or chemo pills. She lived 30yrs afterwards. She went Plantbased, Herbs & went on multiple Health Retreats. Health incorporates all of you, Mind, Body & Soul. That cancer nor any other surfaced & she lived a full life.

Even in Wait & Watch for 13yrs 8mos, I felt this disease in my body. I worked 60hrs per week & had an active social life while raising 3 children alone. I knew my boundaries because I would get a wake up call each time I exceeded them. I took basic precautions & as I got older, I made better choices with my diet, time & energy. I just leave room in my schedule now to nap in the afternoon if need be. May you stay in Wait in Watch indefinitely Ms Carolyn…