Hi, CLLers, I’ve been absent from this site for some time so just a recap- CLL diagnosed 5 years ago, on watch and wait.
my question: is anyone having sleep issues? I believe I’m doing all the right things: diet, exercise, no phone before bed, no caffeine late in the day, going to bed at the same time every night, etc. Etc. I do not have sleep apnea.
Sometimes I sleep well, although it’s rare, and most of the time I fall asleep and then wake up maybe two hours later and am wide awake, unable to sleep again. But it can vary…
I was always a good sleeper and I’ve learned that CLL and insomnia can be related. I just was wondering if others have difficulty and if so, what can be done? Tx in advance , Lisa Alice
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Oh, well then it could be any variable or variables. I didn't know if the chemo, monoclonals, or small molecule -ib's affected sleep.
If you've never taken any cancer meds, they cannot be a factor. So, unless there's a relationship between B cells and sleep regulation, I don't see how CLL would cause sleep dysregulation.
I think stress can be a factor if your mind is racing some. Maybe consider some breathing techniques, chamomile tea, lemon balm, reading a quick chapter from a light book, and don't rule out an occasional tylenol pm Sleep is so important.
I got very excited but that seems a very off off label use unless you are describing a beneficial side effect with the prescription being for some other reason
Sleep issues for women can be related to the waning hormones of menopause and post-menopause. When I started low-dose bio-identical hormones, my sleep issues resolved, as well as my energy levels increased.
This may not apply to you, but I thought I’d put it out there as a consideration; something to ask your doctor about.
I think this is a real consideration. Peri menopause and menopausal symptoms can last decades and sleep issues are high on the list. The additional conscious and or unconscious stress linked to our condition probably makes a wonderful insomnia cocktail:/
Looks like you're already taking sleep hygiene seriously. I don't know if you might find some sort of therapy helpful? Apparently CBT has been shown to reduce PMT symptoms.
I've found simple breathing techniques really helpful too.
My naturopath tests my hormone levels and then prescribes a personal bio-identical formula, which a compound lab makes. It costs $70.+/month. The testing is covered by insurance. Functional Medicine doctors also do this.
We retest every few months, making any adjustments needed. I ran out a couple of times when I changed doctors and was shocked at how poorly I slept and how tired I became. My new doctor will be testing every hormone, not just sex hormones.
And how is it supposed to do that? Melatonin is a hormone everybody produces naturally. Only some don't have enough of it because all the screen watching we do late into the night.
In seeing the developing debate, between you both I did a little searching. My search question ran thus, do melatonin supplements raise white blood cell count a danger for CLL patients.
This study from 2018 asks many searching questions and includes some interesting findings, none that are definitive and acknowledged studies in mice, as well as, low patient number observations and contradictory findings that were hard to square away.
In short, I'd love for a more concentrated study to be done with this information as a starting point. Anyone that can provide more understanding to this topic, you're views would be most welcome. 🙂
Melatonin: does it have utility in the treatment of haematological neoplasms?
As summarized in this review, melatonin appears to have beneficial actions against haematological neoplasms, overall. The normal circadian pattern of secretion of melatonin from the pineal gland may determine its protective actions against haematological cancers. The positive effects of melatonin are pro‐apoptotic, pro‐oxidative, anti‐proliferative and immunomodulatory. Thus, the timing of exogenous melatonin administration may be critical in determining its efficacy as an oncostatic agent. Importantly, melatonin also ameliorates the toxicity of many drugs used to treat haematological malignancies, including myelotoxicity and toxicity on non‐haematological tissues. Finally, clarification of the intracellular signalling network of melatonin's anti‐neoplastic actions will help to facilitate further basic research and clinical application of melatonin in the treatment of haematological neoplasms.(my emphasis)
I only speculate but to me it would seem logical that if melatonin increases white blood cell counts then in the case of healthy people that would mean better immunity. Most people are melatonin deficient and they sleep poorly due to watching TVs and cell phone screens late into the night. They sell blue light suppressing glasses to help somewhat counter this problem. So whatever melatonin does I think it is unlikely that it will boost the number of cancerous B cells. It may be even beneficial for us just like the study that you quoted writes.
Hi Lisa, I was diagnosed 2.5 years ago and I’m also on watch and wait. I totally relate to what you’re going through. Some nights I sleep straight through, but other times I’m wide awake after just 2 hours and can’t fall back asleep. I’ve noticed that it usually happens when I’m stressed or have something big coming up the next day. Otherwise, I sleep fine. I hope things get better for you.
I have sleep issues and the only thing that works for me is to leave the bedroom, go downstairs and have a warm sleep tea, read a few pages of my book. I then go and snuggle back into bed and I’m quickly asleep.
Interesting concept I haven’t done any more google searches on biphasic sleep but that sleepify article has to be the worse piece of junk writing I have ever read . Not AI as it wouldn’t be that bad!
HiSince my fatigue kicked in 2020, I too have struggled with insomnia.
Again as described the same if I fall asleep and wake 1 to 3 hours later, I know that's me done for the night.
All what I've read is there is no direct link, but a lot of CLLers do suffer, especially those with fatigue.
I listen to audio books as I get quality rest if not sleep and seem to be able to function on that.
I also, have sleeping pills to take, to break up the cycle, almost as a reset. Instead of daily sleeping pills as it has a bigger knock on effect to my fatigue.
I've had trouble sleeping for last 10 years, i fall asleep ok but wake up 4 or 5 time during night, i just put mine down to menopause, I alao have Osteoarthritis up my spine so am always turning in the night so could also be a factor to.
Hi Lisa, yes I have almost the same pattern. Go to sleep straight away then wake 3 hours later then cant sleep so listen to audio books podcasts etc. usually drop off again around 6am then can't get out of bed at 7.30!!Feel utterly drained then and often take 30 min nap mid afternoon to catch up. Unlike you I have been treated with O&V 3 years ago and that's when my sleep problems began. Almost as though when I started feeling much better in a good remission my sleep got worse. Don't like taking sleeping pills as I worry they become addictive and like most with CLL I take enough pills as it is!!
I'm seeing consultant for 6 months review in a few weeks so will ask her for advice which I'm happy to share. Good luck and best wishes. Patrick
Hi. I was diagnosed 3 months ago and on watch and wait. I too am experiencing the same thing. I exercise, eat right etc. I sleep soundly for 2 hours and wake up and can’t go back to sleep. I end up taking a sleep aid after a couple of nights of not sleeping. Helps a bit. Good luck!
Hello. I'm 3 years of initial W&W now. I really think the sleeping issues we are sharing are mainly due to the underlying stress of knowing we have cancer. When we sleep, our mind processes everything we did, heard, & saw. Our body heals while we sleep. If you're like me, any little thing that irritates or bothers me will be on my mind when I wake. Whether mental or physical, I think my body is trying to "heal" the problem. In its frustration, wakes me up.My solutions: I pray for guidance to make the right decisions and trust my prayers were heard; I take time to appreciate nature- walking, gardening, loving up our puppy; sharing our bountiful garden with the neighbors & sharing recipes; hobbies- geneology ( it's been thrilling to discover people my mom had searched for all of her life); sewing for family, friends, & people in need...at the end of the day, I find all of these blessings make me greatful to God. That brings me peace that pushes the cancer thoughts away and sleep returns. Covid has separated us from the world we knew. That doesn't help. So, I'm claiming as many reconnections as I can as safely as I can. Thankfully, I now have a ton of new found family to scrapbook for future generations ❤️.
Hi Lisa. I also have sleep issues on Watch and Wait. Sometimes better, sometimes worse. CLL Society just had information on a sleep study that may be of interest. I just returned from being out of the country and have not had time to check it out further. cancer.uthscsa.edu/heme-study
Reading the coments & that others on W&W experience Insomnia, ,I feel it DEFINITELY sounds CLL related. I am exactly as you & all the others described, wide awake after 2 or so hrs, no explanation, cant get back to sleep, or wake up 3-4 times/ night. & has gotten progressively worse with time & worsening CLL fatigue. Tried EVERYYHING. Mine has absolutely nothing to do w/ menopause. Remember, just b/cause there's not a study to prove it, doesn't mean it's not clinically significant or related. .Trust your body & your intuition. Adequate sleep is so important for daily healing for everyone. therefore sleep deprivation in & of itself can contribute to worsening the disease.
Hi Lisa. I've been on w&w for 4yrs.I generally sleep 😴 fairly well but some nights it's as if my off switch just isn't functioning and I feel wide awake before actually getting over to sleep.I have a feeling that it's somehow connected with my CLL.I have stopped having my cup of tea in the evening which seems to have helped in my case.I'm also taking meds for hypertension.Maybe a link between caffeinated drinks and meds aswell as CLL going on in the background which sadly we can never fully switch off from.
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Sleep is so important. 
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