Hot flushes

[snowdroprose]

I had some chemotherapy (FCR) last year and now my bloods are improving all the time. The thing that reminds me that I've still got Cll is the hot flushes. Nobody ever seems to to have heard of hot flushes except as a symptom of the menopause which I'm sure mine is not. So, can anyone please explain why Cll causes hot flushes. What are the mechanisms involved and can I do anything to alleviate or minimise them? Before the chemo they occurred only during the day but now I get them, on and off, 24/7. Thank you in anticipation.

[helenolton]

I only get them if I eat sugar.

[snowdroprose in reply to helenolton]

That's interesting - and worth a try. Thanx.

[helenolton in reply to snowdroprose]

Just found this on the internet. Avoiding Sugar

Sugar, eaten in excess, triggers hot flashes and night sweats episodes, so if you often find yourself drenched in sweat with your heart beating faster than normal, you should be altering your diet and cutting back on the foods which contain high amounts of this sweet additive.

[AussieNeil Partner Administrator in reply to helenolton]

Seems there's lots more to learn about this and we still need research in CLL patients rather than menopausal women. Here's a Medscape article on the topic - again menopausal women, not CLL patients (:

medscape.com/viewarticle/77...

(Vasomotor refers to actions upon a blood vessel which alter its diameter. A larger diameter results in greater blood flow, bringing additional heat.)

Neil

[kitcat49 in reply to helenolton]

VERY interesting ! I also find my feet burn ,noticeable at night when I go to bed maybe because of prone position......Something else,my lower arms and hands sweat like crazy sometimes,this being within last year. ( I'm 66)

[DWRobs in reply to kitcat49]

My feet burn also. More so later in the day and especially at night. I thought it was due to periferal neuropathy as my primary Doctor had diagnosed. My Oncologist knows of my discomfort in my feet as well as my Pain Management Doctor but none of them have indicated it had anything to do with my CLL. I would be interested to know more.

[DWRobs in reply to helenolton]

I believe this happens to me also.

[Dpop]

I was diagnosed June 2015 and until recently had hot flashes now and then but now it has gotten worse over the last couple of weeks. I too wonder why CLL and hot flashes come hand in hand.

[AussieNeil Partner Administrator]

CLL messes with our immune system. One of the techniques our immune system uses to combat infection is to raise our body temperature and many of us report poor temperature regulation (including hot flushes) with CLL. The mechanism is not understood, but is probably caused by CLL cells releasing messaging proteins such as chemokines. As to how to alleviate/minimise the temperature regulation irregularities, I wish we knew! I've found it helps to wear clothing that can be quickly adjusted to ease the level of discomfort, but I haven't been able to identify any cause other than perhaps sudden transitions in air temperature triggering an episode.

Neil

[Cllcanada Top Poster CURE Hero]

CLL night sweats are quite an event and only at night...they usually require a change of night clothes and bedding...like someone poured water on you ...

If they are lesser, there may be other causes sometimes infections will cause them and the obvious menopause...

Needs to be discussed with your doctors...

~chris

[Chrisfer]

Hi Snowdroprose

Sorry to hear of your discomfort and just sharing my own personal view and experience. I find that if you can put yourself through some vigorous exercise most days your body is able to eliminate a lot of the toxins that may otherwise be hanging around in the blood, lymph and tissues through sweating .

Of course that presumes that you're in a well enough state to exercise a lot.

Wishing you well

[virdieblue]

Thank you! I told my oncologist that I felt like my thermostat was broken. I was formerly a cold most of the time person, but the last few years I have the off and on hots. I've become very uncomfortable in warm situations.

Virginia

[PaulaS Volunteer]

Strange but I've never had hot flushes or night sweats with CLL. (I had hot flushes with the menopause, but they stopped a long time ago). At every appointment, the doctors would ask about sweats, but I never came up with the goods, even when my ALC was nearly 300 (thousand) and my spleen enlarged so much I couldn't eat much. I do get slightly more sweaty at nights than I used to, but it's nothing compared to the drenching sweats that are typical of CLL.

When I get infections, I sometimes get very sweaty, but that's a different thing.

It would be interesting to know what causes the bad sweats, and why some people get them, and some don't. I don't do much vigorous exercise, and I eat a lot of sugary things.

So much is a mystery, with CLL...

Paula

[Cammie]

I had flushes throughout the watch and wait period last time.

Not drenching night sweats as I did first time round but just flushes.

As Was pointed out above the body thermostat becomes out of cink with cll.

However looking at the positive side it was a god send on a cold winters morning playing golf lol

[Soosie16-USA]

Know I am late to the discussion, but I found it very interesting and offering some good advice. I have suffered through the flush/sweating episodes many times - not as much as a 'night sweat', but during the day to the point where I feel like someone needs to wring me out. The doctor's office always asks about night sweats which are few and do not seemed too concerned about daily, drenching sweats (I am post-menapausal). I am going to try cutting out too much sugar which would be good for me on many levels. I was diagnosed in 7/2015 and now am on maintenance.

Thank you all for a good discussion that has been a concern of mine.

Best wishes to all, Susan

[charliegirl]

Dear Snowdroprose

I have had daytime hot flushes, with variable amounts of sweating since I was first diagnosed. Because it was the flushes that made me feel unwell (to me the sweats are just embarrassing) it took a while to have them confirmed as part of the CLL.

My advice is loose, layered clothing and wear as much cotton as you can. Pure wool, I never now wear. It just insulates too much! Having a cold drink - water or fruit juice ( orange and mango v good as thicker and this seems to help the cooling effect).

The other thing I've done is grow a fringe - it hides the perspiration on my forehead. Vain perhaps but helps my self esteem!

Good luck on the CLL journey

Charlie Girl

[deveritt]

I get hot flushes under two circumstances:

1. when awake and unable to get back to sleep in the early morning, in which case I simply ease my top half out of the duvet. If this becomes too cold, I keep out of the duvet but wear a thin t-shirt.

2. When stressed I heat up far more than I used to before CLL, so I'm learning to avoid stressors or - more precisely - not get drawn into difficult situations or thoughts. Difficult when the stress is about CLL! But beginning to become manageable otherwise.

I also think the hot flushes are worse when I eat too close to sleeping, so I've changed my eating habits to avoid large meals for at least 4 hours before going to bed.