Any one else have issues with night sweats?

[Packers46]

I'm having a lot of issues with night sweats. I have CLL/SLL and have had night sweats for about a year and a half. They are getting worse and worse. I have to sleep on a beach towel to keep from ruining the sheets every night. Does anyone else have this issue?

[Hidden]

Hi. Night sweats are very common with CLL I’m afraid. Mine got gradually worse until I had my course of chemo. I am not aware of anything you can do to ease them except the obvious things like a cool room and light nightwear and bedding, but hopefully others may have some suggestions. I’ll be very interested too as I am starting to experience them again.

[Hidden]

Terrible night and day sweats for 20 years. No hope for them going away.

[MsLockYourPosts Passed Volunteer]

For night sweats people have mentioned cooling pads for the bed. Some even get the ones sold in pet stores for dog beds. Oversized cotton towels on the bed, which you are doing, and used as a blanket, with extras next to the bed, so you can make quick bedding changes during the night are often mentioned. Terry cloth robes to sleep in can also help - weight depending on the season. You probably already have tried fans directed on you.

I’ll check other sites, as this used to come up all of the time. Interesting that it doesn’t come up as frequently any more. Maybe the newer treatments have helped with this.

Check the related posts here, also. They show u to the right on computers or tablets and at the bottom on phones.

[Pete9876]

Night sweats are the pits!! I had them for for a few months until I started treatment for CLL. I am on the AVO trial at Dana Farber. The night sweats stopped within a few weeks of starting the medicine.

[PumpkinTyger]

Personally I found losing weight and stopping drinking red wine really helped reduce the night sweats. Over the last five weeks of lockdown I have put some of the weight back on plus I’ve been drinking more red wine (I suspect the two are related 🤔) with the predictable result that my night sweats have started to return. I need to get a grip.

My theory as to why this happens, for which I have absolutely no evidence, is that the liver is already overworked processing the additional lymphocytes and giving it additional wine to process plus hormones from the additional fat (known to be metabolically more active than we thought) causes us to attempt to sweat out the increased metabolic waste products, the skin being a secondary organ for detoxification. I expect I’ll get taken down by the science nerds on this forum for my homegrown explanation but when I’m in a good headspace I practice intermittent fasting which I believe gives my liver a bit of a rest. Currently I’m in a lockdown headspace which means I am baking, eating meat daily, drinking port and not working. I am managing to keep up a certain level of exercise which means that while I am fatter I am also firmer 💪 small mercies 🙄

If you can get your head around it why not try intermittent fasting and see if it makes a difference. ie only eat between 12-8pm or variations of that (16:8)

[210savannah]

I had terrible night sweats AND day sweats! It was terrible! But once I started on Ibrutinib my sweats went away! It was only a couple of weeks when I noticed they were letting up. No sweats now in over a year!

[Shepherd777]

Once my wife started treatment the night sweats became less frequent and eventually disappeared. Now she might have a night sweat twice a year or three at the most and this is usually when she has left the electric blanket on high all night. :>)

[Gary53]

Hi, I used to have night sweats, until having chemotherapy, (16 years ago). The CLL is back, and I had occasional sweats. Since taking Ibrutinib, very few mild ones. I now sleep alone, with a very light cover. I keep my chest warm as with CLL we are prone to lung infections. I'm on Dapsone to avoid chest infections.

PumpkinTyger - your idea sounds logical, so I'll go along with you on that.

Hope this is of help, Gary

[Smakwater]

Packers46,

I had night sweats whereas I had to use two bath towels a night to wipe down. I had to change bed sheets daily. Night sweats decreased after 3 rounds of obinutuzuimab. During obinutuzumab plus venetoclax, I would have occasional mild night sweats. 4 months post treatment and night sweats are now what I would consider normal, (very rare and very mild) probably no longer CLL or treatment related.

JM

[Doggoneit101]

I used to have the same issue before I started treatment. Night sweats make for a crappy night's sleep. I tried everything but unfortunately nothing helped but treatment.

[Handley]

Hi Packers. My experience with CLL is that my sweats have more or less gone now I've (just) finished treatment (Obinutuzumab and Chlorambucil). I still have very minor incidents occasionally, but I still sleep on a beach towel + old towel on pillow, and use my life-saving 2 speed ELECTRIC FAN!! If you haven't tried it, get one and make sure it is silent running before you buy it! My wife has adapted to having it on my side of the bed and it works for me beautifully. Also the gentle wooshing helps mask her snoring so I'm a double winner!

Cheers, Handley.