I was Diagnosed one month ago and have started... - CLL Support

CLL Support

22,367 members38,474 posts

I was Diagnosed one month ago and have started having terrible night sweats.

gustave profile image
13 Replies

I wake in the night with wet hair and wet upper body. NIghtgown is wet, and my sheets are damp. This is happening every night. I would love to hear what causes this just at night?

Written by
gustave profile image
gustave
To view profiles and participate in discussions please or .
13 Replies

thats why night sweats are a leukemia symptom. Mine were also terrible before i started treatment. I would tell your doctor.

cllady01 profile image
cllady01Former Volunteer

gustave, the following link is titled: Spotting the difference: Night Sweats in Leukemia vs. normal night sweats.

Along with night sweats, there is a listing of other symptoms. Also check out the Related Posts column to the right of your post (if on other than a computer, the list will be well below, so scroll down to get other's experiences and the replies about night sweats.

leukaemiacare.org.uk/suppor...

AussieNeil profile image
AussieNeilAdministrator

Night sweats, along with unexpected weight loss and fever are referred to as B-symptoms and are an indicator that CLL may be becoming active. It's thought to be due to cytokine production. CLL is well described as a cancer of the immune system and it's quite common to have disruptions in our temperature regulation, including surprisingly, sometimes a low temperature when we are fighting a severe infection. You need to inform your specialist of this new and very annoying symptom. Night sweats can come and go, so this doesn't necessarily mean that you are approaching the need for treatment, but your specialist will want to check for other signs to determine whether you need closer monitoring.

Chaya Venkat, who for many years supported the international CLL community, had a knack for turning highly technical papers into easily readable explanations. After around 10 to 15 hours of research, she produced this report about her research on B symptoms and CLL, with much of her article on night sweats : clltopics.org/DC/BSymptoms....

Here's the very informative abstract of one of the references she found if you want to read more: acsjournals.onlinelibrary.w...

Neil

Psmithuk profile image
Psmithuk in reply to AussieNeil

I do like to do things differently - my night sweats came in the early days, and haven’t returned.

Anyone else?

Cx

gustave profile image
gustave in reply to AussieNeil

Thank you Neil very much.

tonyfrench profile image
tonyfrench

I started having "Night Sweats" every night in the very beginning(before being diagnosed), it was so bad,that I went out and bought 7 sets of sheets,even being on Imbruvica for 2 years,I still have nights where I have to get out of bed for the night after 2 to 3 hours.

I recently had night sweats that were more extreme than usual and found I had a GI bleed causing them.

mcp4y2k profile image
mcp4y2k

I had night sweats prior to treatment for CLL. Let your dr know.

Berrytog profile image
Berrytog

It is an interesting symptom and not always due to CLL it can be related to so many other things.

In 2003 I was due to go on holiday and had begun getting tight banding on my head like a clamp. I went to the doctor but he had no diagnosis but said it would be OK to go. While away I started getting night sweats,waking up in a pool of water drenched and shivering but in the day time I felt nothing. I contributed it to the head clamps and possible pleural pneumonia which I had suffered from since my twenties and exacipated by damp or fog which also made me breathless,it was foggy at night where I was staying so I left it at that and a course of antibiotics and all was right again. Two years later at a routine annual blood test my doctor asked to see me and told me that my white count was high a year before but they had thought nothing of it as it can go up and down particularly with plural pneumonia. Samples were sent to London and CLL was confirmed in 2006 and I still wonder if the night sweats three years beforehand were the start or cause of my CLL but I have not had night sweats since that day, they lasted for a week until the antibiotics did their thing.

BellaBee10 profile image
BellaBee10

I had them really badly before I was diagnosed and they stopped after FCR. I've started getting them again but my lymph count is still only 1.6 so need to work out what else is causing it. Hope you get sorted and I agree, phone your consultant.

MitziC profile image
MitziC

I am almost 3 years in and I don't have night sweats I'm just hot ALL THE TIME, don't have to be doing anything just hot.y hormones are fine , already been through the change so is this cll related like the night sweats? My house is like a meat locker all year long, my poor husband works outside and here on NC we have some very hot and humid summers and he comes in everyday and puts on a long sleeve shirt, but it's just awful being so hot all the time.

Tton46 profile image
Tton46 in reply to MitziC

Same here I do not have the “chronic” night sweats but all day all night just feel hot clammy, feel like I’m sweating because I’ve never been one to perspire and I always have freezing cold feet. Yet I’m burning up 🥵 no soaking of sheets or clothes! God bless you and prayers for you! This is definitely a symptom my Doc said to call immediately if I have drenching night sweats! Could be time for treatment!

AnnieZ102 profile image
AnnieZ102 in reply to Tton46

That's interesting. You're the first person I've seen mention inability to sweat and cold feet. I had the same problem for many years, almost to the point of collapse from overheating, but not a drop of sweat.

Approximately a year before treatment I started to sweat profusely, mostly at night. It wasn't like "normal" sweating. It was as if sweat poured from every cell, drenching I suppose describes it.

Amazingly, since treatment (C&O) I sweat normally and my feet are rarely icy cold now.

You may also like...

Any one else have issues with night sweats?

on a beach towel to keep from ruining the sheets every night. Does anyone else have this issue?

Diagnosed Dec 2013 I have been told I need to start FCR treatment; based on blood results and mild night sweats. Otherwise I feel fine.

I would like to know if I ask to postpone treatment whether I am taking a risk. I am told early...

Return of symptoms after starting on I & V four months ago

Can't think of a logical reason why this would be happening while I have been on uninterrupted...

SLL, Starting Venetoclax, Night Sweats

by his jaw. He’s mentioned getting Night sweats, approx. 6 nights, where he needed to change his...

I was diagnosed 8 years ago today

36k to 9k over just about a five day period. But I still walk this earth with a lovely family and...