Night Sweats

[CouldBworse]

I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the last 40 years I would get periodic night sweats, very randomly. Once a year, then over the last 20 years, I would have a few night sweats year. Over the last 5 years, I get them a few days in a row, then nothing for months. I recently have had 30 consecutive days of severe night sweats. Is there anything I can do to help avoid or reduce the sweats ?

[AussieNeil Administrator]

Frequent night sweats are an indication that your CLL is probably becoming active, so it's time to arrange an appointment with your specialist. They will look to see if there are other confirming indications that treatment time has approached. While that may not be encouraging to hear, we have learned a lot about how well the newer treatment drugs work long term in the two years since you've been diagnosed and are now discovering how well they work in combination. We also know better which patients will do well on the growing range of available treatments. Ask your specialist if there any clinical trials available to you, as these can give you access to treatments as good or better than what's otherwise available, which would otherwise not be available for 5 years or so. They may not even be approved where you live, due to the costs involved.

Please let us know the outcome of your appointment. Also, if you could update your profile, including your country of residence, you'll get far more relevant feedback: healthunlocked.com/profile/...

Neil

[Bombelflug in reply to AussieNeil]

Just as a matter of interest, and something I’ve always pondered; why are they ‘ night’ sweats? Does our CLL take advantage of the dark in some way? Why do they seem to happen at night and not during the daylight hours? Or should I just keep the light on?

[AussieNeil Administrator in reply to Bombelflug]

CLL is aptly termed a cancer of the immune system and the CLL cells kick out messenger proteins (cytokines) that interfere with our immune system, including temperature regulation. Why we get night sweats rather than day sweats is poorly understood. I would think it's more related to circadian rhythms, which are in part influenced by light levels.

Neil

[Bombelflug in reply to AussieNeil]

Thanks Neil. I’ll leave the lights on then

[Hidden in reply to Bombelflug]

I've had them in the day, as well as at night. Being retired, I notice everything going on with my body. Perhaps, our daily activities take the focus off what our body is doing, therefore occurring but going unnoticed?!

[Hidden]

I have had effusive sweating, day and night for the last 30 years. It has gradually increased. I change my clothes several times a day and my nightgown at least twice, sometimes I have to change the sheets. I am in "watch and wait". I do notice that it comes and goes, I will have a few nights dry then go right back to the sweat queen. I carry baby wipes with me to stay semi dry lol

[studebaker in reply to Hidden]

That is what I was like before treatment. I complained about it to my GP for a long time. I never new when they will come, day or night. It was definitely not menopause at 75, but there was no interest to investigate until lumps appeared on my neck.

I was sent to ENT specialist and her first question was if I have sweats. After the biopsy results my sweating mystery was solved 🤔

Just like Neil said, it might be a time for discussion with your doctor.

Dana

[PumpkinTyger]

My CLL was discovered because I was concerned about still having night sweats 8 years post menopause. Looking back at old blood tests the CLL started at the same time as my menopause but of course who knows why or indeed if they are connected.

Mine is low level and not rising much so I looked at what I could change in my lifestyle that would help my symptoms.

Reducing alcohol and losing weight really helped but the one thing I found that works specifically is taking Chinese herbs. You would need to find a reputable therapist, and the prescription is personally tailored, but I know I’m taking tried and tested herbs that have been used for thousands of years, however I did ask my GP for a liver test to check about a year in and all was fine.

This is not a cure, it’s symptom control, but works for me.

Another thing that works for me is occasional fasting It’s not easy but a day without food seems to lower my temperature.

Of course you must get to see your consultant as your symptoms have changed. I tried all of the above because I was on W&W and needed to do something that I felt was being proactive for myself rather sitting and worrying.

Good luck!

[Hidden in reply to PumpkinTyger]

Did you know that Reishi mushrooms increase your lymphocytes? What Chinese herbs are you taking?

[PumpkinTyger in reply to Hidden]

Hi Pacific, do you mean you've seen some research that has shown that Reishi mushrooms increase the clonal B cells? My herbs don't include Reishi mushrooms and my levels have been stable since diagnosis but I love mushrooms generally and cook a lot with them. I usually take the view that eating a wide variety of food in food form is beneficial, ie not extracts or concentrations. I boil the herbs I take to make a tea, they are not processed in any way and I feel better when I take them.

I used to take CBD oil for my knee's but read here on Health Unlocked that it drives the CLL into the lymph glands making it more active so I had to find other ways to deal with my mildly arthritic knees.

I have my (postponed several times) telephone consultation with my specialist next week so I'll find out what's been happening with my CLL during lockdown.

Thank you

[Big_Dee]

Hello CouldBworse

I have also sweat during the day if I did finger exercises most of my life. I the year or so before CLL diagnose I had couple of random massive sweats during the day. I had night sweats about every other night for 3 months after diagnose and 3 month period before treatment. I do not have night sweats post treatment. I suspect that as one is at rest with coverings, one does not have as much evaporation of sweat as you would during the day. I just developed work-a-rounds to absorb the night sweats to point I was not drenched in the morning.

[Smakwater]

CouldBworse,

Although there are some theories and observation data, there is no absolute explanation for why the sweats occur more severe at night. It is known that metabolic changes occur during rest. Metabolic activity affects our biology from the ground up exponentially, including the influence on the immune systems battle with cancer cells.

Below is an article on metabolism published through NCBI and another article discussing night sweats in relation to CLL.

ncbi.nlm.nih.gov/pmc/articl...

The influences and chains of influence response cycles that occur with changes in metabolic frequency are almost innumerable, extremely complex, and difficult to isolate and observe accurately.

everydayhealth.com/leukemia...

This is one of many curative symptom challenges that we all are awaiting the answer.

Keep a dry towel and a cool damp cloth close on the night stand for now.

JM

[Hidden in reply to Smakwater]

Good info. Thanks for the links!

[tonyfrench]

When the "CLL Switch" flipped on in November 2017, the night sweats became nightly(along with the fatigue and lower Abdomen pains),I've been on Imbruvica since April 2018 and the night sweats still happens at least once a week

I bought 6 sets of sheets back when the switched on too