Hi , Night sweats ....still on watch and wait not experienced night sweats at the moment ... can anyone describe these ..please read on ....

[stewie]

is it down to the individual what they experience ie ......some are really soaked and have to change pjs and do others may experience a mild form ....a little sweaty during the night ?? .

[MarkTC]

You may never experience them before treatment, I didn't. They were described to me as a total drenching of the body, anything other did not count.

[Newdawn Administrator]

Hi Stewie, I'm too on W & W and whilst I thankfully don't presently have soaking night sweats, I understand that they can become so severe that some people have to change bedding as well as pj's. I'll leave it to others more skilled in the scientific explanations to explain why this happens. Certainly when this becomes very severe, it seems a strong indication for the start of treatment (along with other indicators).

I do however seem to have a very wonky internal thermometer at the moment and at times I feel like my blood is actually boiling even though I don't have a temperature. It could also be attributable to being menopausal of course but I do often wake with a lot of perspiration on the chest area and I get very itchy at night.

I've started to take a very cool shower before bed to help with this and I live in temperatures that most people would shiver in.

The added complication for me with this is a tendency to getting a sweat rash which has been resistant to treatment without second line fungal cream from my doctor (CLL isn't pretty is it?).

Newdawn

[Safta in reply to Newdawn]

wow, I thought it was only me. Thanks for sharing! (And I live in a place where winter means 'turning off the air-conditioning for an hour')

[David39]

Hi Stewie,

I never had night sweats before treatment, though I regularly felt warmer than usual both night and day. A holiday abroad in the tropics a in the year I was treated was unusually uncomfortable and I spent a lot of time in the air conditioned indoors. Ironically I did have a bout of night sweats during the year AFTER treatment at a time when I had a persistent chest infection. I can testify to them being completely drenching, to the extent that the bed linen does indeed become damp. The discomfort can't be ignored and in my experience, it's impossible to stay in bed - you just have to get up to cool down and wait until it passes.

Is there a milder form? I don't know: perhaps you're suffering the same kind of overheating I did prior to treatment. I don't think you can mistake the genuine article!

[Cllcanada Top Poster CURE Hero]

Cllers over the years have reported strange temperature regulation... however true night sweats are like someone poured a bottle of water on you when you are sleeping... you are soaked.

It is important to separate out night sweats that may be caused by other factors like infection, fairly common in CLL.

~chris

[rover1]

Had night sweats for about 2/3 years most of time have change sheets about 2/3 times a night have started sweats in the day as well (thermostat) not working! well thats how it feels like Dr not sure why sent for more tests deep joy

[Berrytog]

I had night sweats when my CLL first started eight years ago and it was similar to the Asian flu I had in the fifties whilst living in Turkey. Every night I woke in a pool of water as though I had just jumped in a swimming pool and started to shivver, I also had a feeling like a vice was attached to my head, doctors had no answer and prescribed strong anti-biotics. I have not had it since but I can get over hot at night and have itchy legs which wears off by 3.am. I have no other symptoms of CLL save for my high white count and my consultant is suggesting I start treatment soon but not the standard treatment a trial of one of the new drugs.

[jangreen]

Hi I have had sweaty nights, true night sweats and itchy legs. True night sweats are just like have a pint of water poured over you but I didn't feel ill . The sweaty nights are I think worse and these make me feel ill the bed sheet is damp and they last for over an hour. The itchy legs are not too bad at the moment but I had to put a cover over our bottom blanket because of the discomfort.I am two yrs post treatment.

[Marisa]

I have never had night sweats despite being on my third round of treatment for CLL. However, I do get quite hot at night and this interferes with my sleeping pattern. Those are really only the side effects I have. I also seem to be able to tolerate fairly cool temperatures in the home. I have noticed that when I am unwell, I really get cold in bed and need lots of blankets or a heat pad and sometimes it seems that I can move into a different sleeping position when cold and all of a sudden I feel a rush of warmth suffuse my whole body. (Before treatment I had no night sweats either).

Does anybody out there know what causes night sweats and why people experience them?

[palanm in reply to Marisa]

I do wonder when you feel hot whether you could reduce the night clothes a bit/or remove blankets and have the fan on to the level you require and then switch it off when you feel better or no more hotter.Also when you get cold you may need extra blankets or a heater to a level you require.

[HappyDave]

Hi

I am recently diagnosed (6 months Stage 1 W&W).

I have night sweats and I have had them for a while. They are quite unpleasant and I soak the bed and my pillows.I now have a sacrificial pillow that is thrown away and changed regularly. My sweats also stain the sheets which despite washing in the latest hi tech washing powder fails to restore them to a clean white.

I have them all year and even in the depths of the last winter in an unheated bedroom I slept naked with no bed clothes over me.

I do not have the sweats all the time but another indicator that I have had a bad night sweat is when my ear wax melts and runs into my outer ear (not pleasant).

I have installed a ceiling fan for the summer.This is effective but the noise of the motor turning does disturb me.

On the humerous side it is nice being being described as `hot in bed` even if that only relates to CLL.

Regards

Dave

[queencalabrese in reply to HappyDave]

I also have night sweats. My ear wax also runs out of my inner ear. First time I've heard anyone else say that, Dave!

[Barbarann]

I have been diagnosed with CLL for 17 months now, and the night sweats contributed to the referral which led to diagnosis. I'm on watch and wait, though, no need for medication at the moment.

Sometimes I've moved to the spare bed to cool down, and more recently I've found that it's helpful to sleep on a towel, which helps save the sheets and doesn't feel clammy.

Hope this helps someone!

Regards,

Barbarann

[MarkTC]

I would imagine the reason for night sweats is a basic physical response. Work done = heat. Your body goes into overdrive with white blood cells warring against each other, cll cells are invasively trying to enter many areas of your body not used to having them present. Bone marrow compensating for the loss of mass due to cll infiltration. The body becomes a hyper in-efficient factory for a while, dissipating heat as most machines do.

I do love to try and mechanise what's going on, makes me feel like I understand it more, when I don't.

[Quarry]

As above, night sweats are a total drenching / requirement for sheet changes (often multiple per night) - I get minor sweats, but my haematologist discounts these: they are not what clinicians call night sweats. You have to get drenched!

As to why they happen - my haematologist I think told me that the way/mechanism is really not known.......................... Nor, I think, why sweats are only at night (does Mark's analogy require the war stop during day-time?!.....I am not sure it does!)

Another example of unknown mechanisms: my auto-immune/enlarged spleen/red blood cell destruction (AIHA) is triggered by CLL: steroids reverse this (either temporarily or permanently) by temporarily lowering the immunity function.......however the exact mechanism is not understood, nor why/how the steroids can permanently reverse it. Following Mark's way of thinking, I see this as a switch being thrown by the CLL (setting spleen to destroy red blood cells) and reversed by the steroids (to a possibly unstable state) - however no-one knows how this switch really works or why reversal is unstable in 30% of cases (indeed, and more positively, even perhaps why it is permanent in 70% of cases!).

The mysteries of CLL!

[Hidden]

When I read Newdawn's response I thought ....me too. Thermostat has ceased to function and I am nearly always hot, and night sweaty without the drenching night sweat that I experienced only once and is unmistakeable. However on the extremely rare event of my becoming cold, only soaking in a hot bath warms me up. As my partner suffers with osteo arthritis and is always cold it makes for some interesting times. I am only in the early stages and on W & W. but seem to have the symptoms of someone whose CLL is more advanced. Weariness, headachy, breathless etc.

I put it down to being a wrinkly.

[Kwenda]

I believe that there is a link between REM ( Rapid Eye Movement ) sleep and the night sweats.

From discussions with others with CLL they reported that the night sweats came on during periods of deeper sleep, which is when we have REM sleep patterns. During light sleep which is mainly towards dawn the people I talked with did not experience night sweats.

Can any else confirm this idea.? A good idea for us all to comment and provide some useful research.

Dick

[SethB34 in reply to Kwenda]

For me, there is a definite correllation between REM sleep and night sweats.

[Soflajoe]

2nd year onW&W. Some form or another of night sweating is now a nightly thing. I try to keep just a light sheet and blanket on myself when going to bed along with a light cotton t-shirt because I am a bit cold. I usually awake with some sweating going on. Sheets, pillow case, and naturally the t-shirt are involved. I remove the t-shirt to help the evaporation process and try to keep away from the "wet spots" . Shets and such are changed regularly. I try to keep the bedroom cool at night.

[Cllcanada Top Poster CURE Hero]

Soflajoe

you need to bring this to the attention of your CLL doctor in the next month... Night Sweats are an indication of a pretreatment assessment. It does NOT mean you are headed for treatment, but could be an indication that your CLL is progressing... might be menopause or who knows what...

[becks1111]

I see it's a recurring theme. I sweat with any physical activity it's been this way for 3 or so years. I never used to sweat but my thermostat is really haywire. Been 8 yr's w & but starting fcr next week. Please don't tell me this will get worse. The night sweats or hot flashes have been 3 or so years too but not so severe....I dont know but going through menopause too makes it confusing if its a hot flash or night sweats. Lol. At least you don't have to deal with that.Stewie. lol

[Hidden]

i have had this once,could not believe a person could sweat so much,it was made worse by the fact i was on board a plane and had to sit with the same clothes all through my 5 hour flight,but as cllcanada points out,not always to do with our cll

my wife thinks it happened because i opened my wallet

[Newdawn Administrator]

Lol Brian! The prices on planes are enough to make anyone break out in a sweat!

Seriously though it's no fun. In our house the tussle is no longer for the tv remote control, it's for the central heating thermostat which I seem to like at shiver level for the rest of the family!

Newdawn

[SAMBS]

Hi Stewie, I experienced for a while my body feeling warmer around my breast/chest area. I also started taking Starflower Oil capsules, bought from a particular reputable health shop - going back about 1/17 years now and in those days I was v healthy and not on any meds.

[AussieNeil Administrator in reply to SAMBS]

SAMBS and Stewie,

If you haven't already done so, read Cllcanada's post on herbal remedies here:

healthunlocked.com/cllsuppo...

The Memorial Sloan Kettering Cancer Center (MSKCC) has this to say about Starflower/Borage:

mskcc.org/cancer-care/herb/...

Reading the MSKCC disclaimer when you enter their site is a must. In the case of Starflower/Borage, I note that it is claimed to assist with menopause symptoms (hence the night sweats link) and also may have anti-inflammatory properties. It also naturally contains an akaloid that is toxic to your liver if you take high enough doses for long enough. You certainly wouldn't want to take it without informing your specialist.

Neil

[Cllcanada Top Poster CURE Hero]

Please remember this... Talk to your doctor first.

What you read about botanicals is based on people with healthy immune systems in nearly all cases, if there are clinical trials, which often there aren't.

We CLLers are not in that healthy group... so PLEASE talk to your doctor before trying so called herbal and natural remedies...

A friend a number of years ago with CLL tried Black Cohosh for symptoms of menopause and it nearly killed her.

Just because your friend's cousin's auntie had great results with some herb, doesn't mean you will!

ods.od.nih.gov/factsheets/B...

[grizzlebear]

You will know when you get them! go swimming in your clothes then get straight into bed wearing them. You will then have some idea. Its so nice for your partner NOT!

[jwyllie]

I had severe night sweats before FR treatment. You wake up drenched in sweat. To avoid soaking my sheets, I slept on a large bath towel (which absorbed my sweat) and I put a smaller towel over my pillow. I now take Aleve and it has caused my night sweats to end.

[Soflajoe]

On Watch and Wait for almost 3 years. I understand the concern over the night sweats and the degree of episodes.

Just go with it ! Change clothes when needed and be thankfull for the nights when they are not necessary. They will come and go and I really don't think that anyone has been able to put a handle on why this happens. I have found it helpful to remove my tops during those nights. Keep your room cooler and use less covers along with absorbent cottonwear along with 100% cotton sheets, that breath. No synthetics !.. Hope this was helpful !

[Louiej]

I've just been reading all the above post about night sweats and body temperatures going haywire. It has certainly made me feel a but easier knowing other people with CLL are feeling the same way. I've just had my 1st cold in years which tuned to bronchitis and have been treated with antibiotics. I'm hoping it's just a one off and not going to be a regular episode. X

[stunned]

I suffered my first "night sweat" 3 days ago and boy did i sweat. I turned my heating off mid April, always have my bedroom window open and use pure cotton sheets.

I awoke about 2 am to find both myself and the bed absolutely soaking wet, like i had just had a shower. I had to change the sheets and the duvet cover. My body didnt feel hot or clammy.

By 4.30 am i was awake again, soaking wet, wet sheets and duvet cover and had to strip the bed and change everything.

Good job i have lots of bedding, ha ha.

Changing the bed twice in 3 hours really knocked me for six and i felt shattered the next morning.

No sweats since and no idea why i had 2 on Tuesday evening.

Just another "symptom" of CLL. XX

[pitbull]

Hmmm interesting and I can relate to you all.

I was diagnosed Feb 2013 on W&W and luckily don't get the night sweats but I do find I have difficulty controlling my core temperature, I work in a warm office and find I have the fan on constantly even in the winter as I get so hot. I have always put this down to CLL and an inability to control body temperature efficiently.

I like Newdawn like to turn the thermostat down and have the windows open while my wife is one for heat so you can imagine the arguments, I find I wear very light clothes in the house and in the summer very little.

I actually woke up 2 days ago for my geriatric toilet break and I was sweating heavilly to the extent my pillow was soaked and the harnesss of my sleep apnea mask was also drenched, only my head seemed to be affected however so not sure this was a nigth sweat.

Keep strong all

Kirk