Can anyone provide feedback on their experienc... - CLL Support
Can anyone provide feedback on their experiences with sweats are they a constant thing or do they come and go?
Mine come and go. I usually experience them between 2 and 5AM and may have them for a few nights in a row, sometimes several times a night. I can then go for a week or more without any. Intensity varies too from a sudden light skin dampness through to wet clothes. Thankfully I very rarely have soaking sweats.
The most uncomfortable hot flushes/sweats I've had have been during the day and have been triggered by moving from warm conditions outside into an air conditioned building. They hit suddenly and I can feel really ill and just want to sit down for a while until I feel OK again. I suspect that leukaemia somehow upsets temperature regulation. What annoys me most about the night sweats is the resulting sleep disturbance; it can take me a half an hour or more to get back to sleep.
This "B symptom" has certainly made me more appreciative of what many women go through with menopause. I feel sorry for any that have CLL and are faced with the quandary of trying to work out if their CLL is getting worse or whether their sweats/hot flushes will resolve naturally with time.
Neil
I went through a period of about 6 months of sweats 4 years after diagnosis. They occurred at 3am and were drenching...often to the point of needing to change the bed linen.
This occurred on a weekly basis, but there was nothing I could observe that triggered them.
My absolute lymphocyte count (ALC) was in the low 30K range at the time, and they simply stopped and have never returned in the past 8 years.
Yes...CLL is weird!
Ironically I suffered night sweats only AFTER treatment, during a 3 month period when I had a persistent chest infection. They weren't constant, but occurred several nights per week and were the real McCoy - drenching from neck to knees. After eventually getting rid of the infection they went away, thankfully, so in my case the cause was pretty obvious.
Mine seem to occur when having infections too but this time felt worse and during daytime as well
For me they come and go at the moment.
My night sweats became quite common for a while, but then seemed to almost fade away.
However now when I return home from exercise, such as a days hiking or cycling, i get what seems just like a fever. I get sudden feelings of being chilled and the shakes.
It is as if I have no internal temperature controls any longer, and I am an air-conditioning engineer.!!!
I remember my GP asking me what I thought was the cause and my reply was that my internal thermostat needed recalibrating. Mmmmm was his reply.
I've had them for years. They faded after treatment but returned within a year. They are worse in summer. Mine have lessened in quality since trying green tea capsules once a day.
It might be worth trying and persevering for a few weeks.
Thank you for the suggestion keep well.
Hi Its been good to read other people experiences. I first had night sweats before CLL in my 30's when I had shingles. When I developed CLL I got clammy and feeling ill at night but not night sweats as such ( I agree the bit about no internal temperature control). I tried HRT (I was a women in her 50's) but these made no difference and a Gyno. said stop as it obviously had nothing to do with the menoplause. After stopping the HRT she was right it made no difference. Just before treatment I did get drenching night sweats. After treatment I'm back to the clammy feeling. Stress makes it worse and so does doing too much.I'm going to try the green tea capsules ( I don't like the liquid stuff.) and see if that makes any difference. Any more tips please post.
I've also had them for along time before I was diagnosed with CLL. First thought was my age and early menopause but told at diagnosis that it was the CLL. They reached a peak of 5 nights a week which lasted for about 7 months then suddenly stopped and have gone down to 1 a week/10 days. Lovely as I now can sleep! Hopefully will stay like this for a while.
Ahhhhh sleep, love it. Hope you manage to get yours.
Your comment ' Jangreen ' was interesting..
You wrote that ' Stress makes it worse and so does doing too much '...
I have uncluttered my life over the last 18 months and this has made a difference. I now take things a lot more slowly and concentrate on my exercise and getting out as much as possible into the fresh air outdoors.
My night sweats have mainly faded and my own personal thermostat has improved. I suspect the lowered stress, and certainly the exercise, have made the difference.
Agree on the 'stress' point. Instead of worrying about whether or not to do things etc I just sort it quickly, either way
Had night/day sweats for about two years start 2am change sheets about 3times a night Intensity varies worse in summer as I write is sweet is pouring out ! I cycle most days on return looks like I have walk out of shower (thermosat not working) no treatment so far
Acid reflux with imbruvica and or Venetoclax ? Has anyone had it? What do you recommend to help solve it. 
