Night Sweats

[kitchengardener]

I posted this on the online community page but it didn't seem to go anywhere so then I found this area ... so here goes.

I am fairly newly diagnosed with CLL (November 2018). For many years I have had what I call my 'warm' nights which I connected to menopausal years. However now I wonder if perhaps it could be connected to non diagnosed CLL. I get very warm around my neck and head area whilst my feet can still be very cold. I have an appointment next week with my consultant so will ask her then but I just wondered if anyone here had experienced similar symptoms.

[stunned]

Snap, oh I am so glad you posted this. I had 2 weeks of horrendous sudden hot sweats throughout the night about 2 years . Because I don't sleep very well I always woke when one hit so never got to the drenched stage, which is how they describe CLL night sweats.

I rang the hospital, had bloods done and was told it was doubtful that it was CLL and to see Gp to have blood tested for the menopause. Sure enough I was told my blood test showed I had started the menopause.

For 2 years now I have put up with these hot sweats, sometimes so hot and sudden I panic because I feel overwhelmed by the heat I cant breathe. I now keep a wet face flannel in the freezer and take it to bed with me each night, when a hotty hits I cover my face and neck with it and it then only lasts seconds instead of minutes.

Day time flushes were easier to handle as they were never as severe as the night ones.

Because the hospital know I am on the menopause they have dismissed the night sweats as being menopausal and not CLL related.

My WBC and ALC are now significantly increased, WBC, 280 and ALC 270 so now I wonder if night sweats are actually CLL.

Something to mention at next check up methinks.

Anne

[Thundercat2 in reply to stunned]

Yes the annoying night sweats! I have them too and connected them with menopause at first. They did seem worse when I was in "those years" but have calmed down a bit now. I still get them however, very similar to yours, around my neck and head and now realize they are probably related to the CLL. I have learned to live with them by keeping my bedroom extra cool, using very light blankets only and covering and uncovering myself as needed. The drenching night sweats that are symptoms we need to watch for are very different from what I understand. Like someone else has said here, it feels like someone dumped a bucket of water on you. Hope that helps!

[cajunjeff]

Night sweats are well known with Cll and are sometimes referred to as B symptoms. If we get drenching night sweats that last for over a month, it can be an indication our Cll is active and we are nearing the time to treat.

cllsociety.org/2016/03/symp...

There are some things one can do to lessen night sweats like taking cold showers before bed and turning down the thermostat, but if they are Cll related the best way to rid them is to treat the Cll. You should report night sweats to your doctor.

[stunned in reply to cajunjeff]

As I said, because of my poor sleep pattern I don't sweat long enough to end up drenched. My skin is damp and in places where body parts have been together, ie arms and chest, they can be wet to touch, but the bedclothes are never wet.

So does this mean its not CLL related?

[cajunjeff in reply to stunned]

Stunned that is a question best asked of your doctor. But given the fact that your wbc is high and, as I recall, you have started or about to start treatment, I think the night sweats are probably related to your Cll.

That’s a good thing in the sense that if your sweats are related to Cll, they should go away when you treat.

I had night sweats on and off during watch and wait which got pretty regular right before treatment. I have not had any since a month or after I started ibrutinib. Ibrutinib works amazingly fast.

[stunned in reply to cajunjeff]

I am waiting results of blood tests and should be speaking to the hospital tomorrow, then I will find out what happens next.

[Cindy1462]

My night sweats only started when I started venetoclax. No sweats before treatment or when on FCR or when on Ibrutinib. I have had the menopause and they are very different from the hot flushes I had then. My blood results are good so it’s very strange. I hope you get some respite soon as we really need our sleep to cope with this disease. Take care. Cindy.

[joe_C in reply to Cindy1462]

Cindy, I experience the same as you. Some nights ok and other times wake up and change my damp nightshirt. Not profuse sweating. Don’t have it during the day. We all react differently to these meds. Ugh

[Cindy1462 in reply to joe_C]

It’s a pain isn’t it joe? It never happens when I go for a nap in the afternoon strangly 🤔

[BallparkChaser]

I had similar experience with sweating around head and neck at night. Pretty regularly pre and post diagnosis but none since started Ibrutinib. I was hesitant to call it B symptom night sweats because it wasn’t full body as typically described.