I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch and wait situation.
I cannot access drug coverage until October, so am very anxious about needing treatment. Any information will be greatly appreciated.
A standard question at consultation is “Any night sweats”?Don’t panic you can report this in May. Best to note when you have them. Keep a note of anything unusual to report in May.
Night sweats are not the only symptom to consider but the trends in your FBC report.
Don’t panic.
Many thanks for your comforting reply. I will write my experiences down for my May appointment.
I find it useful to keep a diary of how things progress, what I eat and how much exercise I take. Then when I have an appointment with my consultant, I then look back and make a list of questions. It isn't always easy to remember things to ask if you are feeling anxious about the appointment. I was diagnosed in 2018 and started treatment in August 2021. However, I feel that I probably had CLL for a few years prior to diagnosis. I had the most dreadful night sweats but ignored them because being a lady of a certain age thought it was normal. Since I began treatment with Acalabrutinib I haven't had quite so many.
You have certainly done the best thing in joining this forum, we have several knowledgeable people willing to help with questions BUT if you are concerned you MUST consult your medical team. Please try not to worry too much, stay safe and stay strong.
I’ve had night sweat, fatigue been overly tired and bones hurting. I’m 57 and told I had Cll in 2019 but I’m still on the W&W list. Not what they are waiting on but I know the treatment can but just as bad. Currently working from home as being out brings about infections I don’t like.
I've been on W&W since 2014.......Over the years, I've had numerous episodes of drenching sweats at night (a rainbow appeared above my bed), but my bloods are ok....... I'm not sure what actually causes these episodes.... I think my body heating system goes a bit haywire, now and again...
I keep a diary just for any medical issues l experience ..... Just for reference...
Good luck with your appointment with the Haematologist...
If l may add: It's a good idea to keep the bedroom cool..... Even in the winter, l won't use any heating in there... I'm already hot in bed (I'm not bragging)... 😂
Thanks so much for your reply. I will also keep a diary; good idea!
You are welcome🌞
Night sweats are evidence of B cell activity, and only treatment will decrease or stop them, maybe. They may or may not mean your CLL is advancing rapidly. My first major remission, I continued to get them intermittently along with a few other symptoms. Initially I got really upset, thinking my remission was over. But my hem-onc said "some people get them, some don't". IMO much of the stress of the diagnosis can trigger some symptoms like this. I did a lot of meditation to try to calm myself down. As well as getting used to wearing 100% cotton T-shirt & shorts (mens boxers haha) to sleep in and swapping them nightly. Wearing fresh ones that didn't have any sweat helps me a lot.
Sheets of 100% cotton percale will be cooler, compared to sateen or anything synthetic. My flannel sheets only come out if its below zero out & it's on the colder side indoors. Look for a cooling mattress pad, rotate it 90 degrees every time you change your sheets, or weekly, or some sort of schedule. Put a small safety pin at the bottom edge, you can easily keep track of your rotations and wash the mattress pad after a full 360 degree rotation. I wash my feet or put on clean socks before bed so they are clean, and rotate my sheets 180 degrees once, before putting them in the laundry. Stuff like this soaks up more sweat, and you wash sheets/pads less. A lower thread count on the sheets is cooler too, we once got 1200 count sheets and boy did I dislike them in the summer! Way too hot for me. I look for mmm around 600-800 thread count, but this is a matter of preference. If 300 thread count suits you, that's what to get. Watch the comforter/top blanket too, synthetics and silk will trap more heat. I use loose weave cotton blankets and layer them, with 100% cotton comforter/duvet covers on top. If I can peel back a layer easily, I get back to sleep quicker and don't wake up cold from completely uncovering all the blankets. The duvet covers don't have any kind of comforter inside them in the summer months, I do put a blanket or comforter inside during the winter. Keeping a fan on helps, too. If I can keep cool enough, I don't wake up if the sweats are light. Or at least I get back to sleep quickly with some slight covering adjustment.
IMO the time to be concerned/consider calling the docs to be seen sooner is if you get severe, drenching ones nightly. When you wake up with nightclothes and sheets wet, and then they start to feel cold/clammy. In my case, that correlated with my CLL growing very fast.
Thank you for the very interesting info re cotton thread count, etc, as I am always hot during the night, and I'm always kicking off the duvet, then huddling back under it. I am also inclined to agree that, if getting full-on night sweats, an earlier appointment might be preferable. May I ask, though, why you say they are evidence of Bcell activity? On the few occasions I have had high fever in my life, and fever broke, would cause great sweating -- so is such a fever the product of Bcell activity or is the breaking of the fever such activity? By the way, my husband, who had solid tumor cancer, not blood cancer, would get them very dramatically.
Lymphocytes are composed of NK cells, T cells, and B cells (where antibodies are produced.) While both T cells and B cells can produce cytokines depending on the stimulus, with a CLL diagnosis it is our B lymphocytes/cells that are the "most abnormal" compared to T cells. (NK cells seem to be "regulated" by the various cytokines, they don't seem to produce them) If flow cytometry and FISH showed mostly defects/abnormalities of our T cells, the diagnosis wouldn't be CLL. With abnormal B-cells, some of us have temperature rise symptoms similar to those of normal people responding to an infection. My hem-onc said B cell activity seemed to occur mostly at night in a number of patients, resulting in "night sweats" versus "day sweats". Early in our sleep cycle, pro inflammatory cytokines seem to peak (somewhat non techy article discussing this attached)
ncbi.nlm.nih.gov/pmc/articl...
I am one of those who also get a "hot head" during the day/have abnormal B cell activity then, and don't even spike a temp with documented viral or bacterial infection. Our dysfunction with CLL can take many forms!
So to succinctly answer your question, instead of giving all the aforementioned background (sorry my "teacher" loves to pop out) my hem-onc told me it was thought B cell activity at night that caused the sweats. The activity itself, and cytokines released, cause the inflammation and temperature increase. I am not sure if there is a definitive "cytokines get active--temperature rises--body then sweats to bring down temperature" timeline in terms of actual timing. It is more likely highly individual; some may sweat quickly with a small temperature rise, some may not sweat until actual temperature goes above X, or is elevated for X amount of time.
Re: the sheets, I did a bunch of research when I started getting awful night sweats. Some of the newer fibers that have come out in the last decade may be better at wicking sweat, so "avoid synthetics" may not be true anymore. I have seen ads for moisture wicking nightclothes, sheets, etc. but IMO they are somewhat pricey. I already had plain cotton, just made sure I didn't choose a cotton/poly mix to sleep in. And from living in FL, I already had discovered looser weave blankets, etc. If you aren't in a warmer climate but have friends/family in one, see if they can find something locally. I can't easily find "tropical weight" clothing and bedding locally since leaving Florida, even in summer.
Thanks for all your information and understanding. That article was so interesting -- to the extent i could understand it -- and seemed to address everyone's immune system, not just CLL (I quit after abstract as I was already just barely grasping). Again, my husband's non-CLL night sweats were totally connected with the cancerous process and, when doing well under chemo, they completely stopped, only to return, like the grim reaper, at the very end.
First, welcome to this forum 9RGBZ, a great decision as you’ll find much support and many wise people with great advice n answers to this unique cancer we all have in common. Sorry you found you have CLL but you’ll quickly find out it’s not a death sentence and some members on this site have gone decades on W&W (wait n watch) wo needing treatment, n you might be one of those lucky ones.
I see this is your first post on the unusual “nite sweats” (some of us with CLL I learned from this forum have quirky “thermostats”!). Ironically, nite sweats was also my first post, about a year ago when I joined this group. I too am on W&W and after being dx with CLL in Sept 2020 I often experienced those nite sweats for a couple months. Spoke with my CLL doc and because they were not super drenching and fact I wasn’t experiencing other key symptoms he was not too concerned. No meds were prescribed, just wait it out n see.
Hope your CLL journey stays in a long W&W period. Suggest focus on enjoying life and try not to focus on worrying about this cancer, adjust to it! …cus if and when treatment is needed, their are good ones! You’ll be alright, know that this cancer is “treatable n beatable”!
Take care.
Thanks so much for the positive remarks! Most of my anxiety is from not being on a medicare drug program where i can afford treatment. I can't access it until mid October. I think some of the night sweats may be due to the anxiety.
Hello 9RGBX
Hopefully your are feeling a bit less anxious today!
My husband has CLL (watch & wait since nov. 2020, suspected since 2018 possibly) but I am here on this AMAZING forum~
I notate everything in my calendar (as many have already suggested). Even if it seems "minor", I document for future reference purposes. 2 weeks ago, hubby was "hot" & threw covers off, noted it. Ended up being just that, the weather here is crazy fluctuating. But he knows not to "hide" things from me (we both have a habit if not wanting to worry the other) so I was glad he told me.
I had night sweats years ago before my sleep apnea was diagnosed. Hubby gets them every time we fly (anxiety), and when he had pericarditis. Not saying any if these are your concern but just that maybe it is a bit of anxiety for you.
We splurged on the "blissy" pillow cases last year because we both love a cool feeling pillow lol We love it~
I am glad you shared and wish you lots of peace of mind and health & wellness. It's always easier said then done but there are so, so many advances in treatments & as I said, what special people we have here, yourself included!!
Take care~
Cookie
Hi Cookie. Actually, I am also the wife of the person with CLL and do the typing for him! I am blown away by the number of responses to his question and also the kindness sent our way. We looked for a local support group, and there is one in Charlotte, but due to covid, no meetings, so this site is a perfect alternative.
Thank you for your support.
Welcome to our Forum!
Night sweats!!!
Oh yeh! As SofiaDeo said its a B cell thing - and cytokine mediated... they are immune protein chemical messengers - normal - but as CLLers have amore as our Lymphocyste count grows.
Its common, and does tend to improve on treatment.
As for coping with it - well you have great replies above.
When I got FCR treated my night sweats ceased. We had to chuck the mattress though!
As for treatment - dont rush - no panic.
Its like a bumpy plane landing - no need to worry until the cabin crew look worried! If you Drs are not anxious for you, no need for you to be!
Take time to look through the pinned posts, loads of CLL information - best on the planet!
😉And please feel free to share with us your concerns and anxieties.
For the rest - breath, calm and plan to enjoy your life! This is a long road to travel!
Jig
"Don't worry if the cabin crew (CLL Doctors) are not worried." That was really funny and correct as well.
I've flown in the Azores many times - can be rough out there - seemed an apt metaphor.
I actually think - asking a Dr if they are worried - for us - is helpful when they say No.
Of course it risks a Yes - but then I'd rather know.
PS My son - was cabin crew for 6 years - transWorld. I have a good teacher.
Flying into Denver, Colorado feels like the pilot is dodging missiles. One needs two seat belts... an addition belt that crosses your chest as in the car. Along with that it sounds like somebody is beating on the outside of the plane with big bean bags.
Thanks for your reply. What is FCR treatment? I am so glad I found this site! Everyone is so kind.
FCR - it's chemotherapy.
macmillan.org.uk/cancer-inf...
It's an older treatment. Has been the gold standard. Now being overtaken by new treatments. Still used for younger fitter folk, especially with a 13q deletion and mutated form of CLL. It's been good for me so far.
Jig
Thank you.
Hi, Jig, as I mentioned to Sofia, my husband who did not have blood cancer but a solid tumor type got horrific night sweats as part of his symptoms. Did he have the same Bcell activity causing them because unlike us CLLers, he presumably did NOT have more Bcells. Thanks.
patient.info/signs-symptoms...
Night sweats have many causes. The mechanism is variable.
Tumours can cause fevers, and in turn sweats, for example. Fever is almost always immune mediated.
The immune system deals with infection, and also cancers.
Hence in your husbands case cytokines will be active and doing their job. This subject is vast, hence no links.
I am sorry to learn your husband had this experience, was his solid tumour cancerous. (Pedantic... but tumour means swelling, not always malignant)
In medical care, night sweats must always be exhaustively investigated.
Best wishes to you.
Jig
Hi... just wanted to mention that my night sweats started about 5 years prior to starting treatment. That said, having night sweats wasn’t the key determinant for starting treatment. While night sweats can be an indicator of cll activity it may also mean your body is fighting another infection of some type. Hope the helps.
Don’t panic, stress related take it easy
I have been on Imbruvica for four months; I started getting occasional light night sweats a couple of months ago. But it has brought my WBC from 90,00 to 30,000 in that time.
Welcome to the CLL Club,I was diagnosed in 2007 at the young age of 51 and at that time the only indicator I had was night sweats.12 years later I commenced treatment. In between I never felt I’ll, so I continued working as normal.Before I went to bed I placed a large towel under me,I have always slept naked so it was never an issue,you can do that in Australia. Night sweats do not indicate you are getting worse.I used to love a sauna and for 12 years I got them all for free.When they ended I missed them.The only thing you need to watch is dehydration so you may need to ask your doctor if you can take something to replenish electrolytes.
Life is beautiful
Cocomolly
Hi. I have night sweats also an increase in sweating during the day doing simple thing like going for a walk or DIY jobs. Normally before CLL I would also be what I would say I was a easily sweating person when doing exercise or during the very warm summer nights, pillow soaking of sweat. I was diagnosed with CLL Feb 2021 ( On W & W )and I was worried about the increase in sweating although it was not what I would call it those drenching night sweats linked to CLL B symptom's. I spoke to My GP and checked with my CLL Nurse Specialist and had it confirmed with my CLL consultant that it is more than probable that it is just an increase in my natural state. I find that keeping as cool as reasonable overnight and not drinking to much near bed time helps also my GP prescribed me Oxybutynin 1 x 2.5mg twice a day which is very helpful. I also seem to sweat more when my anxiety level raises. I did keep a log for quite some time on how much I was sweating but after taking the Oxybutynin I stopped as it seem to get better. Hope this is helpful and any further questions you may have please let me know.
Regard Steve
Thanks so much! I will ask my Dr. about this if it worsens. I think it has a lot to do with my anxiety over not having drug coverage until October. The drugs are not affordable in the U.S. unless you have insurance. I am so comforted by all the replies I have received and wish I could thank every single one!
Many of the CLL drugs have patient assistance programs. If your doc think you need treatment, discuss what this might look like, and apply.
If you should need treatment before Oct, you may qualify for a clinical trial that pays for the medications. I have periodic night sweats but my numbers are still good and within the Watch and Wait parameters. My platelets have started to decline so I’m on an every two month schedule now at the Duke Blood Cancer Center. Best wishes for decreased anxiety and remaining in w&w for many years.
Hi 9Rgbz
I was diagnosed with CLL in 2013. In early days night sweats my only symptom while my CLL markers were not all that high . After a few years extreme fatigue and heavy night sweats set in as relative blood marker readings worsened. On W and W until 2020 before treatment initiated in August as symptoms made daily life intolerable.
Began participation in a clinical trial taking Acalabrutinib for past 20 months which is working well. Night sweats ceased and fatigue level not bad these days. All good.
From my experience night sweats in early days were expected. Much worse than the sweats was the debilitating increasing fatigue and feeling ill all the time as my CLL worsened.
Anyway my capsule style chemotherapy is working wonders which means if your CLL worsens help is available to you.
All the best with your haemotologist review.
Same age and like many, night sweats seemed to be the trigger for blood tests and visit to haematologist. I’ve been on W&W for 4 years and bloods pretty stable but still get the sweats. The best thing I have found is avoid cotton at night. There are plenty of lightweight merino wool t shirt available which work very well and avoid the red rashes. Bamboo also works! Good luck
I am in exact situation and have been bringing a frozen hot water bottle to bed with me when I need it during the night. Find having it below my chest with a blanket between helps me sleep so much easier. Try it and see. I see my oncologist this month and told her about night sweats 6 months ago. That was the reason for a six month visit instead of the one year.
9RGBZ, seriously, I keep a fan on low and situated on the floor, by my side of the bed. I am 73 years young and female. The fan ricochets off my side of the bed and keeps air circulating. This help a great deal. I keep a fold up hand fan with me at all times when I feel the HEAT in me turning up. I also keep a fan next to me at work and my tv chair. Air circulation is my remedy-AND SOMETIMES A POPSICLE! I'm 4 years into W&W and WBC is at 75,000. It has been as high as 99.8, but we figured that was because of inflammation I was dealing with.🙂 Sandra
I am on w&w for about 2 years. Last July 2021, I was prescribed Escitalopram as I was down in the dumps. After about 4 weeks I started having night sweats. I thought it was due to my CLL changing or getting worse. Appt with Oncologist showed good labs. It was so bad I was wrapping myself in a comforter on top of the bed to sleep. I would wake up with knots in my stomach about the same as stress knots and I was a mess. I read that Escitalopram can cause night sweats. I weaned myself off (didn't stop cold turkey), cut the pills in half, then every other day. Night sweats stopped and have not returned. Also, about the same time my script for Magnesium bumped from 120mg a day to 400. Developed tummy and bowel issues. Loose stools and tummy aches. I was so scared I had an colonoscopy and endoscopy by my GI doc to rule out stuff. Got to thinking back on what had changed about that time. Cut the Magnesium back down and tummy issues went away. Magnesium is in a lot of laxatives my doctor says. Anyway, bottom line, lots of things can cause lots of physical changes that are not necessary for the good.
My suggestion is to look back about a month before the night sweats started and see if any of your meds changed. Good luck and I hope they go away. They make you miserable!!
Hey 9RGBZ
I too am approaching the three quarter century mark on March 30; maybe, we can form a club. I live in South Florida by the way.
Night sweats have had me wondering many times too, but I believe the key signals for starting treatment are Red Blood Cell/Hemoglobin levels, Platelet numbers, and frequency of infections. The reason for those three are obvious, but it is true we always see the mention of "Drenching Night Sweats" added to the group. Without issues from the other three signals, I wouldn't worry too much about Night Sweats.
I have had night sweats since my first year in Watch and Wait, and they are getting more frequent and with more intensity now in my fourth year. My hair on my head gets so wet many nights you would think I just got out of a swimming pool. My sheets get pretty wet these days, and in the morning they look to have the pattern of an accordion. Still my main three factors have stayed pretty good, and my CLL Specialist at Dana Farber in Boston hasn't worried about the sweats. I do notice if I've had a drink at night I sweat a lot more, but there are plenty nights I've had the sweats I've described with no alcoholic beverage that night.
If you were recently diagnosed in January, then I can't imagine you are anywhere close to starting treatment. From what I've gathered reading many posts over the last four years, its the younger people who tend to need treatment pretty quickly. By younger I mean those diagnosed in their fifties or worse forties. Most of us supposedly get this illness around age 65 or later, and I think a good number never even get treated. I was diagnosed in February 2018 at age 71 (technically 70, but my birthday is in March). If your Red Cell count and hemoglobin are still close to normal levels as well as the Platelets, and your not getting frequent infections, I'd relax.
Just make sure that you have an excellent CLL Specialist. My opinion is to try to be followed by one at a major Cancer Center, if that is possible in your part of the USA. If you can't be followed at a Cancer Center, then look at the backgrounds of the Hemotologist/Oncologists available in your area. You can see where they went to Medical School and where they did their Internships and Residencies, so try for one who at least trained at a major cancer center. I can always help anyone interested in checking backgrounds of physicians.
Carl
It is a relief to hear that the sweating can go on without the condition worsening. Thanks so much for this info!
Hello 9RGBZ
I am not sure I would equate night sweats to more aggressive CLL. I had night sweats which I estimated at 4 fluid oz per night. I had a plastic sheet under my cloth sheet and could hear the water swooshing when I would roll over. I night sweats were what drove me to doctor to be diagnosed with CLL. I had 14 months from time of diagnoses to treatment. I am un-mutated and suspect that has more to do with aggressiveness of my CLL. In the 14 month of W&W, I had nights for 3-4 months then it slowed way down and back up for last 3-4 months before treatment. That change in night sweats may have been due to ambient temperature. I was able to achieve full night of sleep by using 4'x6' quilted lined with plastic used in hospitals as bed cover. I also purchased a pillow filled with buckwheat. These two items were much cooler and wicked the moisture away therefore not having to change bedding and night clothing during night. Whereas the night sweats were uncomfortable it was not the end of the world for me. Blessings, hope this helps.
I have been on Watch and Wait since 2017. I have never had night sweats. I sleep with layers of covers so if I feel hot, I roll back a layer or stick a leg out, and then I’m good. I have more trouble with the summer heat and humidity in Maryland when outside than my husband. When we go on bike rides when it is hot and humid, my heart rate goes much higher than in the other seasons. But I’be never done well in heat. I have a cooling pad ready to add to our bed if needed,
My WBC is over 150k, my platelets are low (108) and my helictites or whatever it is, also low. I have fatigue and will likely start treatment soon.
So night sweats are not strongly correlated with your CLL getting worse. I think we can react differently the changes in our body.
The key is to ask your doctors if they’re worried. If they’re not worried, take some comfort from that.
My oncologist was not worried for a long time. Now he is and he let me know immediately when he was and why. Even then, he did not recommend treatment immediately. He wants to wait 2 months to see if my latest changes are a trend or an anomaly.
CLL Day Sweats! Has anyone found relief for this?!
Any one else have issues with night sweats? 
Body sweats at nights
