I have read a number of places what iwCLL guidelines states that " Among the "TRIGGERS" for starting treatment are d. "Night sweats for > 1 month without evidence of infection.
Like many on W&W I have a lot of sweats both day and night . I have noticed they get worse if your stressed about something , or if your dehydrated and fatigued, so of course I work to avoid this from happening as much as possible.
My question = (Sorry, lack of better wording) Does having sweats cause damage to our bodies ? Physiology wise ? Cellular wise?
For right now it is more of a discomfort and some fatigue issue than a quality of life issue for me. I am learning to live with it.
I read tonight from the CLL Society site that " PART OF THE REASON FOR THE NIGHT SWEATS WITH CLL IS BECAUSE OUR BODY TURNS UP ITS INTERNAL THERMOSTAT TO FIGHT THE CANCER" , which I thought was interesting.
It also sounds like there are different levels of night sweats . I don't have "Drenching" sweats , so I plan on just dealing with them for months and years if need be. Just wondering what the consequences of CLL sweats on the body is over the years .
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Hi Seeker090260, ( I hope those numbers are not a birthday- if they are, you should change your screen name)
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Many of us have less tolerance to high or low temperatures, and some, like me have sweating around my neck at night.
My CLL Expert said that if it didn't seem like someone dumped quarts of water all over my body, and my pajamas and sheets were soaked until I could wring out liquid water, it wasn't the night sweats listed in treatment guidelines.
I have never heard of any connection to other health issues from those very dramatic night sweats.
You may want to follow this Pinned Post and view the videos and links to understand how the treatment guidelines are often used by several CLL expert doctors:
Agree with Len. If you are not absolutely drenched including your bedding, your sweats are not likely due to your CLL. The CLL sweats are absolutely drenching. People sweat in summer more and women can have menopause linked sweats too (not sure how old you are). Regardless of that, it's not nice. Speak to your GP, they might be able to suggest a few things to try out.
In the top right corner of your screen (on a pc/laptop) you should see your avatar and the word 'More'. Click on that to see a drop down list and select 'Settings'. Scroll down until you see 'Change my username'. That should provide you with the chance to do so.
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Just curious. If there's a date of birth, but no name is that an issue? I wouldn't use it but it could be a family member or anyone. Can't see the risk as long as the name is hidden.
You are correct that without other identifying details the birthdate alone is not useful for identity theft or abuse,
But there are social engineering ways to get the other information on one person, and birthdates are used, especially in the medical area as a primary identifier.
So having that info available in an open unlocked posting that can be accessed by a Google search is not recommended.
Hi, I found your post interesting, as I too am suffering from day/night sweats. The description of 'Wet enough to wring water out of clothes and bedding', is a good one.
I was also told that excessive sweating can be as a result of an infection, so it would be helpful to us to know, that difference, and be aware of it.
Either way, it all seems to be part of our CLL and something we have to live with. It used to bother me somewhat until I got good advice, and now I try not to let it 'Spoil my Day'.
I hope you find relief and a way of dealing with 'The dreaded Sweats'
Don’t know the answer to your question regarding if night sweats cause damage … but have had several talks with my CLL doc regarding night sweats and, as previous replies indicate, given mine have been periodic n never drenching (been mild) my CLL doc doesn’t worry much about them.
Being on early W&W, just before n after dx, I had a stretch of those night sweats along with nightly leg and feet cramps (really bad cramps, would bolt me from the bed!). I attributed them to both the fact with having CLL my body thermostat is not 100% working well as it use to (kinda broken it is) AND it seems the sweats n cramps occur during both times of stress and/or heavy physical labor periods.
As noted, my first rounds of sweats n cramps occurred around time of CLL dx PLUS my wife’s dx of cancer too (same timeframe, go figure, cancer sucks!). Stressful times, yes indeed for that reason alone.
Those 2 issues (sweats n cramps) for most part went away for over a year. Taking Magnesium supplements seemed to help the cramps n the night sweats kinda “hibernated”.
Fast forward to the past two months and those evil nightly twins arose again for me. Crapola.
High stress back in my life? Yep… our house caught on fire major damage (no one or no pets were hurt, good news!😀). Then with worst rainfall our area has ever seen our burnt house flooded! Then… we had a major plumbing break in our waterline. All 3 events in same couple past months. N that hell all pales with wife going thru a tough stretch with her Stage 4 cancer at the same time of the “house hell issues”. Her situation trumps all that and so my stress o meter is off the charts, hence hello sweats n cramps have returned. Again, those evils are the least of my concerns.
Because contractors been bidding many thousands of dollars to repair home floods in our area, I decided to do the repairs myself. That entailed moving rocks, dirt, n relandscaping n redraining our house exterior drainage system n also reshaping/relining our house crawl space…. all heavy duty labor work.
Have I had Dehydration? Yep, bet that n the heavy labor work itself along with stress of what’s going on has kickstarted my funky CLL body thermostat bringing on the mild night sweats n it’s buddy, the ole nightly leg cramps.
But as Len said, since the night sweats are not drenching n my CLL doc says same thing it’s not much to be concerned with. Just change the Jammie’s and move on.
So no answer to your specific question but just rattled off my personal perspective and experience with mild night sweats (and leg cramps). Those are quirky issues that many of us noticed with our dx CLL.
And here’s another very weird phenomenon and theory about CLL and our broken thermostat heating up at night n fighting our CLL? Well my CBC counts has two wild spikes in Lymphocytes counts both times were the ones noted in this reply. At post CLL dx my Lympths counts nosedived to near normal range (just above 4) during my night sweats time. Then overtime Lymps rose. 2 years fast forward (to today) with again mild night sweats a-happening my Lymphs counts went from 12 to 5 (near normal) …..a happy huh? … explain that? Weird.
Good luck ahead and hope your night sweats stay mild (or better yet go away or at least hibernate) and not turn drenchy!
Pin57 - I admire your spirit to take on rebuilding your home. I am also sorry to hear about your wife’s cancer reaching stage four. Take care of yourself.
Thank you CW for your kind thoughts. You so often provide supportive replies to many on this forum. It’s priceless.
Gotta say in addition to the great advice and information from so many here, the supportive replies maybe as huge. Certainly underrated but not under appreciative as we all are battling our cancers best we can and/or in a caregiver role to a loved one.
my goodness Pin57! I'm so sorry for all you and your wife are going through 😳. I'm glad you are handy, as is my husband with our issues, and it is also good to take your mind off of things as well as feel a sense of accomplishment. But hydration is a major concern. I find when I'm even babysitting my grandson I don't drink half of what I normally do!! Keep water bottles nearby all the time!! I'm rarely seen without them!! You are doing a good job of "keeping it together" so far, I think. I hope? Good luck to you both ❤️
A few weeks back I started getting more leg cramps and now I am getting small mouth ulcers above my top incisors. I recall the dentist a couple of years ago telling me he thought that was due to a B12 deficiency. I was getting lax with my Magnesium several days ago, and the leg cramps started, So my plan is to increase my magnesium and B12. Also once again will hydrate better. I am noticing since the CLL Dx my lips get chapped easily and yes I do realize that is a sign of dehydration. Having CLL is requiring more water. I also plan on asking GP about getting my vitamin and mineral levels tested. I have read post and do see the quirky issues with CLL , and the broken thermostat issue . Yes , I definitely notice the effect of stress with the sweats. Our fire season has just begun and 3 months ago my home insurance was cancelled after 20 years (with zero claims, Gee, Thank you Nationwide ), so no fire insurance at the moment.
So very sorry to hear about your home and your wife's cancer. Thank God no one was hurt and you have your critters. Many prayers to you and your family.
Thank you for your perspective and for sharing . Everyones feedback helps. Help keeps on track and reminds me I'm not loosing my mind.
If I get leg cramps I buy rehydration treatment. The sort you take if you have had a bad tummy. I have some tablets that need to be diluted. They put back the minerals etc that we loose from dehydration. I have had cramp because its hot weather and the supplement worked. I get wet around my chest and neck. My pyjamas are soaked in just that area. I will take note if anything triggers it.Anne uk
Well science suggests you’d need to ingest enough tonic to swim in to receive the therapeutic dose of quinine for cramps Ron but if it works, why not! 😉 (Incidentally, quinine treatment is no longer medically recommended for cramps).
I loathe tonic but I might suffer the gin because I have awful cramps behind my knees at the moment ☹️
Maybe it’ll destress me some too (a side bennie?!) …. could use that these days.
It’s an ongoing battle here in Rocky Mountain-land with continuous heavy n highly unusual rainstorms, hail, tornadoes, etc. causing much havoc n damage.
Just finished up with redrainage work all around the house n rehabbing our crawl space too.
Today upon inspection, it’s all dry in our basement n crawl space (Yeah! ) … even after yesterdays 3” of rain n hail.
My hubby was in w&w 5 years and treated with v+o this past year. He had "drenching sweats" during two periods. Once when diagnosed....when he ALSO had a histoplasmosis infection and again near treatment when he was fighting sinus infection. All during the w&w period he had day/night sweats periodically that were odd for him and odd compared to most people but not drenching and not terribly alarming. Our feeling was that the coexisting infections were exacerbated by the cll and at those times he was very ill. The "damage" was due to disease processes. During w&w the sweats could be when he was FEELING hot OR cold and were very unpredictable. Room temperature and clothing choice had little to do with it; we felt his body was having difficulty regulating his temperature. Again, we felt the sweats were a symptom of other processes and not themselves doing damage.
Hi Ladylin 151, I can relate to your husband's sweats and infections, I have been on W&W for five years, and I have had them on and off since October last year.
I still have a persistent cough which started 10 weeks ago with a cold and Viral Infection.
On Monday I saw my Haematologist, he took bloods, and three days later, he informed me that it may be time to start treatment.
I hope you both get this resolved, it must be a worrying time for you.
Thank you for your thoughts! We did have escalating worries as he approached treatment. He had been going along steady for quite a while and no one realized CLL was the cause of his various odd symptoms, but once the specialists had a meeting of the minds and treatment started, things resolved quickly. He has been done with V+O for about a month now and is happy and healthy. Today is his last day before retirement and we are dreaming of travel and family and relaxation! Truly, we could see a reduction in his lymph nodes the very first day of his treatment and he only ever missed one day of work through the whole year. I hope your treatment goes absolutely as well and your future is as hopeful as ours! <3
Yes, night sweats are just that, drenching. For night sweats I use buckwheat pillow, hospital quilted 3' x 4' bed pad and fan on my legs. Day sweats are when you are just sitting and start profusely sweating. Good then is when you have treatment, all that generally stops. 😀 I have never started treatment due to night sweats, bothersome but I can live with night sweats. 😁Blessings.
My plans are to wear my big girl pants and tough it out for years, and by other folks description , I can see I have sweats, not drenching. I'll stop grumbling.
Thanks ,Big Dee, I have had night and day sweats, and colds and viral infections for months. My Bloods taken on Monday, show now that it is time for treatment.
I have been on W&W since 2000, but have had drenching night sweats for years. Recently, my oncologist decided that the night sweats and fatigue were enough to initiate treatment. I've been on Zanubritinub (Brukinsa) for about 5 weeks now, and the drenching night sweats have diminished considerably. I also have fewer issues with fatigue. However, I am experiencing some side effects of the oral chemo, but my "numbers" are steadily improving and I am persuaded that the Brukinsa is (by far) the best choice among current BTK inhibitors. I was a little concerned when the chemo showed up in a container that was labeled: "CHEMO DRUG" It also had warnings. And, I had to meet with the ONC before starting, and learned about the resulting toxicity of my body fluids (including night sweats) and all the cautions that must be observed by those in your household.
I have only been on W&W since my diagnoses 4 months ago, and I am realizing that the sweats like your describing are the ones that initiate treatment. At being only 62 and without medicare , I plan on toughing it out for many years , and as Neil and others folks have explained , many people are on W&W for years. Fortunately my changes in lab work is not life threatening and after having help clarification from folks from HunL that I need not panic, well, I am learning to live with CLL and the changes and not panic.
It is good to hear that your feeling better with treatment and your numbers are improving. A number of folks have reported that often the side effects will diminish with time and or lower doses.
I must say I am having a OMG moment with your last sentence. Even having some knowledge as a former nurse, I knew nothing about CLL. As I am typing this out one of 5 fir balls is napping next to me, It never crossed my mind about the the toxicity of body fluids with cemo drugs and the "CAUTIONS that must be applied.
I have learn very little from the 2 oncologist I have seen in the last 4 months, but fortunately I have learn so much from this site and people on the site.
Thank you for sharing and for your feed back. If your feeling up to it and willing to please keep me posted .
I was in W&W for 13yrs 8mos. I had infrequent night sweats but after Covid Pneumonia April 2021, I know what drenching sweat looks like. I had a Cytokine Storm of epic proportions. So I survived barely but by May 2022 I had frequent Sinus Infections, drenched nightly & it pushed me into stage 4. WBC were increasing but by Oct I went from 49 to 89 after being stable for 10yrs (2009-2019). I still was holding out with Plts dropping to 70/80’s but when my Hgb starting dropping I knew it was time to start. I had a bad start with Zanubrutinib full dose but now on Acalabrutinib 1/2 dose for 6 weeks & it feels like a good fit. Numbers are dropping & I can still do small projects if I pace myself. Headaches are infrequent now & I can’t do caffeine because that gives me palpitations🤷🏽♀️. So I think the sweating is related to our bodies fighting this CLL or other infections but can be from dehydration & stress too.
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