I would appreciate input from members on Night Sweats. Although I am a little over two years in W&W, and I understand very well the symptoms my Hematologist/Oncologist will look for regarding triggers for treatment (RBC count, Platelet Count, increased infections, and Night Sweats) I am uncertain if what I have been experiencing is Night Sweats. The other things are easy to quantify or know for sure about, but not Night Sweats.
I've tried to Google it, and what I end up reading confuses me. Some people refer to waking up drenched and in "Pools Of Water" When I read about pools of water I envision actual pools. How can their be pools when sheets will obviously absorb them, and the mattress below the sheets will absorb them too. Then the article that referenced pools, calls it maybe 4 to 6 ounces of water. Four to six ounces of water would be easily absorbed and not leave a pool.
I am afraid of telling my CLL Specialist in my upcoming visit to Dana Farber first week in September that I am having on and off periods of what I think are Night Sweats; if in fact, they are simply heavy sweating. I don't want to make that claim and cause her to think about starting treatment, I'm misunderstanding what real night sweats are. So I'm going to describe what I experience here, with the hope my fellow members on this site with put me straight.
I wake up in the middle of the night alot. I never sleep straight through for more than two to two and a half hours. When i wake up i then go back to sleep for another two hours. On many of those wake up times my side is stuck to the sheets and the sheets are pretty wet. My hair feels like i got out of a shower without drying it, the sheets feel like i dropped two small bottles of water on them, but there are no "Pools" of water. When I get up in the morning the sheets are damp and my side of the bed the sheets have multiple pinched lines like purposely pinched together creases. My wife's side of the bed has flat sheets.
I get stretches of a week or two with no such nights, and then I'll have a week where I have a few nights like that. I think it is increasing but I'm not sure.
Am I nuts, or is this Night Sweats?
Carl
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wizzard166
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What you are experiencing is CLL night sweats. If you have to change the pillow cases, pajamas or lay a towel over the sheets to get back in the bed you are having the CLL sweats. Pools of water is a hyperbole.
They can be a couple of times in one night or one a week or so in the beginning, but the events do tend to increase...even during the day time on occasions. Dehydration may be a problem in the morning or leg cramps as well from the sweats.
Look to the right at the top of this page for related posts on night sweats.
I had that during the day a few times, just sitting down I would get hot and start sweating then after a short period it would stop and I would be back to how I was pre sweats
I'm not medically trained, but that sounds close to what my doctor describes as night sweats. He says not just a little dampness around my neck, but wet clothing and sheets.
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But I suggest you share your detailed description and the frequency. with your doctor, and let the doctor take that into consideration along with your blood test results , fatigue level and node sizes.
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I don't think the doctor will ignore your preferences about not treating, until your blood tests show a sharp drop in Hemoglobin, Hematocrit and platelets, or you go well below 1.0 to 0.5 for your ANC/Neut#.
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Thanks Len for the input, and I know you are right about my doc not just reacting to night sweats.
By the way is Lankister a twist to the name of the Pennsylvania town Lancaster? I know from my years of living in Harrisburg, that locals pronounce Lancaster as Lenkister.
Yes, I grew up in Lancaster, PA and had been trying to explain how to pronounce the name with my Brooklyn born wife, so I had her say LAnk-ister instead of Land-cAster the way they pronounce it in Ohio and California.
- what is your bedroom temperature? if it's around 30 degrees (Celsius), perhaps more than 25 degrees, with no air movement - some healthy people experience increased sweating; though you would probably know throughout your life if you're one of them
- sweating may be a sign of infection; we with CLL are at increased odds of getting infected, and at some stage of CLL disease, our fight with infections will be longer, maybe even constant - hence increased sweating may play a role on the decision on when to start the treatment
Mantana I appreciate you and everyone who contributes when one of us puts out a question. I keep the temp at 72 degrees Fahrenheit which I just converted on Google is 22.2 Celsius.
I think the idea of increased infections makes sense. I notice i go in and out of little or bigger fights with something. The little fights start as feeling the nose getting stuffy and other symptoms we are used to when a real cold is coming. Then the next day it is gone. Those little bouts happen once a week now, when it used to be once every few weeks. Then there are the bouts that last a few days, and then at times a longer one. I have thought about this, and I believe that the bacteria that live in all of us, but which when we are normal don't ever develop into anything, are now beginning to take advantage of our lower immune systems. I'll be the larger incidences of heavy night sweating are occurring when my body is fighting harder to push back the little bouts.
I forgot to mention too in my question yesterday, that every night now I need to pull the heavier top quilt off of the top of my body, leaving my wife's side over her. Then when that doesn't do it, I pull the sheet off of the top of me. Finally on some of the worst nights i totally come out from under everything (and I don't sleep with anything on). Then I wait until the air conditioning cools me down enough to begin putting the sheet and ultimately the quilt back on. Remember my air conditioning is already at what most would consider a pretty low degree. Its like I turn into an oven.
Hi Carl - sounds typical of night sweats to me, including the irregular occurrence and 'degree'. Mine was exactly as you describe, but here are 3 positives: do lie on a bathing towel & put a smaller soft towel on your pillow, get a nice quiet fan with more than one speed and aim it up your side of your bed (not directly on to your wife!) and lastly, it should go when you eventually have treatment. Good luck and cheers - Handley. PS: The fan is great for me and I still use it (unnecessarily) - I just sleep better!
You are having night sweats. I just posted on a couple of days ago on night sweats. I actually had pools of water early on because I had a plastic mattress wrap under the sheets. I bought a buck wheat pillow and quilted hospital bed pad which absorbed most of the sweat and no more pools. I calculated I would sweat about 4-6 fluid oz of water per night. My night sweats were the reason I saw doctor and was diagnosed with CLL. The night sweats occurred most nights for 3-4 months, then stopped for the most part for 3-4 months. My night sweats started back up about 3-4 months before treatment and stopped after completing first cycle of treatment. I did not start treatment because of the night sweats which were only an inconvenience. I had very aggressive CLL and blood was dropping to point I would have required transfusions in month or so. Blessings.
Thank you Big Dee. Everyone's input helps, because it provides alot of theme and variation, and it can help someone whose symptoms are in between others. For example yours started and stopped, even sometimes a few months apart. Mine are not constant every night at the heavy level; although, it seems to me that they have increased in frequency recently..
By what you describe if this condition is new and reoccurring, It would be defined as moderate night sweats which usually occurs just prior to disease tempo increase.
More intense night sweats that last or remain longer than a month are the indicator of advancing disease. The phenomena is commonly paralleled with an acceleration in increasing lymphocytes.
You can find variations in how night sweats are given interpretive measure between clinicians; From my reading, my view is that moderate night sweats occurs at Rai stage II, intense night sweats are respectively stage III and IV.
Lately I’ve had to turn the AC down to 69 degrees before bed. I’d never be able to sleep with 72, the way my body is these days with CLL. Can you try turning it down lower? (And get an extra blanket for your wife!) Btw, during the day I’m freezing with the AC below 75 and have to wear a sweatshirt!
Hey Natural your input is good too. I didnt mention it before, but I do get too cold on some days. We always keep the thermostat at 72 and many days I get too cold; however, at night I start to overheat before we go to sleep. We will typically watch a few episodes of whatever TV Series we are into at the moment, and while sitting up in bed I start to sweat alot. I drench my robe. Then we turn out the lights, and I can't keep even the sheet over me on occaision. After I've laid on top of everything with nothing on for about fifteen minutes, I cool off enough to get under the sheets and ultimately pull the quilt at least to waist level. Some nights that is it, and others I find myself starting to drench the sheets. Weird.
Hey Bennevi. I think night sweats are an extremely common symptom from what I've read on this site and in other medical literature. I don't know what percentage of CLL cases end up with that symptom, but I'll throw out a guess of 75%.
I'm on watch and wait for 3 years now and have had periods of night sweats.
I even set up a numbering system and recorded their severity. Don't know why, but I hardly get them any more.
Like you I've read descriptions about CLL folks waking up in puddles. I'm guessing that's an exaggeration. But my bouts of it have not been severe.
Regarding how to tell if it's CLL night sweats, I compared the new sweating pattern to what I experienced long before I was diagnosed, which was that I hardly ever sweated in bed unless I was overheated. If the sweating is now much worse, I assume it's CLL related.
Here are a couple of comments on how I've mitigated the sweating:
For months I recorded the severity of the sweating each morning, and I noticed that sweating was much more likely and severe if I ate late, close to bedtime, and especially if it was a big meal. So I don't do that.
And I cover with a thin cotton sheet and very light, very breathable blanket. I found that my body temperature raised during the night and the lighter cover worked well.
I only get the night sweats on my upper body. So I keep a stack of comfortable old heavy cotton tee shirts on my headboard, and if I wake up with the tee shirt uncomfortably moist I take off the wet tee shirt, air off a bit, pop on a fresh tee shirt and hop back in bed. The fresh dry tee shirt also feels good and makes me smile. For some reason the sweating does not restart later that same night.
Thank you Photon. I too figured that if my current bouts of sweating were worse than I ever experienced before being diagnosed, which they are, then it must be night sweats related to CLL.
Funny story about my CLL and nightsweats. As my numbers went downhill and the nodes got bigger, i started noticing that my t shirt (pajama top) was moist in the morning. At first just around my neck. Then the front and back of the t-shirt were moist, too.
Of course, my hemoc would ask me about night sweats at every visit. I would describe my wet t shirt neck and he would say, that's nothing.
His rule of thumb was when the bedlinens were so soaked that you had to change them in the middle of the night, that's a sign of serious night sweats.
however, i needed to get chemo for other reasons. my lymph glands had swelled to the point that i couldn't swallow (lymph glands are in your throat, too).
So two important take aways from my experiences:
1) night sweats are an indicator of disease activity. they are not typically the trigger for treatment.
2) always tell your doc about any physical anomalies, no matter how trivial you may think of them. Even if your night sweats aren't in the "swimming pool" degree, they need to know.
l learned this lesson the hard way. i never bothered telling my doc when i developed warts on my hands within a month of starting ibrutinib. Five months later i had a serious viral infection which caused me great difficulties for an entire summer. If i had told my hemoc about the warts, he would have responded that warts are viral and ibrutinib users are vulnerable to nasty viral problems.
wizzard166, I am sorry but it sounds like CLL night sweats to me. I was diagnosed initially because I was HOT in the winter... I have continued to be very warm even 6 years after diagnosis and working on my 5th year of Imbruvica. I haven't found any relief as of yet. Hoping your troublesome nights subside soon!
I was on W&W for just 1 year and thankfully never had night sweats. I am usually cold. (warm heart though!) I never had night sweats when going thru menopause, prior to CLL. Hope this does not last too long for you.
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