Sweating

[Strech51]

I have been recently diagnosed with Stage A CLL. No other issues other than the increased white blood cell count. On W&W. Concern I have is about sweating. I get clammy and then sweaty when doing light exercise or become hot. Concerned that this also happens at night. Is this associated with Night Sweats which is shown as a reportable B Symptom

[lankisterguy Volunteer]

We had a similar question yesterday and here was my reply: healthunlocked.com/cllsuppo...

Regarding night sweats, when I asked Dr. Furman whether my tendency to have a damp pillow at night was night sweats, he defined night sweats as soaking all my clothes, sheets and mattress as if someone had dumped a few gallons of water on me.

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Len

[Vlaminck in reply to lankisterguy]

FWIW re night sweats, my husband, who died 7 yrs ago of esophageal cancer, had night sweats regularly, then they disappeared for awhile while chemo was working, then came back. But they were not like buckets of water were dumped on him. No wet mattress. He and his clothes were just clearly damp.

[Strech51 in reply to Vlaminck]

Thanks. I have a mixture, mostly damp but also sweat occurs in daytime whilst light exercising (walking ) or jobs around the house.

[Big_Dee in reply to lankisterguy]

Hello lankisterguy

Great explanation from Dr. Furman.

[Pin57]

First, welcome to this group! You’ll quickly find it is packed with supportive and very smart people regarding advice on CLL. Your first replier, Len, is a prime example, providing great resources/answers on your question.

Interesting that your first post is same as my first post 2 months ago when I signed up on HU, regarding the weird sweats. I like you, am in W&W mode and now looking backwards, having found out I’m over 8 years n not 2 years W&W, remembering many on and off times of “mild” night sweats.

Discussed that with my CLL doc, and like Len, doc said since “it wasn’t a dunk-tank contest type drenching”sweat, don’t worry about it. Point being he wasn’t concerned n said mild sweats is typically not a red flag your headed to treatment-ville. Can’t speak to your exact situation (I’m no doc) but suggest talk to your doc to get their opinion.

Quirky thing this CLL is. I hope your W&W mode journey is a long one, or better yet ....maybe a cure will occur?

Good luck and again welcome aboard!

[Strech51 in reply to Pin57]

Thank you Pin57. Its great that there is people out there with the same issues and info, gratefully received let hope we can all work together to get a cure.

[cajunjeff]

I would think if you are experiencing sweating, during the day or night, that is new and unusual for you, that it is possibly a B cell symptom that you should report to your doctor.

I would agree with the statement that Len attributed to Dr Furman that night sweats can be drenching. And I think if we are talking about night sweats as a treatment trigger, we are talking about drenching night sweats.

I eventually developed drenching night sweats. But they didn’t start that way, my night sweats just gradually got worse.

There are other reasons for unusual sweating than Cll, so I do not know if your sweats are Cll related or not. If you see your sweats worsen over time as your wbc rises, that would be good evidence your Cll is the culprit.

My night sweats resolved with treatment. I will still moisten a pillow now and then, but my drenching night sweats have all but disappeared as my labs returned to normal with ibrutinib treatment.

[Strech51 in reply to cajunjeff]

Thanks cajunjeff. I am in contact with my CLL doctor and nurse. It seems that at the moment all is OK as bloods and CT scan shows I don't need treatment and I am still in early stages. I will have to put up with the sweating inconvenience and watch for any other issues that may arrive.

[LeoPa]

What helps with sweating is calorie reduction. I find that towards the end of my daily 23 hour fasts my metabolism really slows and my hands and are cold and I am cold as well. Once I eat the inner furnace is regulated up straight away and I feel warm 😊 Going to bed about 7 to 10 hours after the last meal prevents feeling hot during the night. This is for normal sweats, not CLL sweats.

[MsLockYourPosts Passed Volunteer]

Many of us don't have "CLL night sweats", but are heat and/or cold intolerant. I am both, and do experience lighter sweats, especially during the summer.

[Strech51 in reply to MsLockYourPosts]

Thank you. I must admit it would be great if I didn't have the sweats a its a reportable B symptom on my diagnoses. I have checked things out for me and at the moment no worries. Just uncomfortable but I will have to live with it.

[marebearzy]

Been dealing with nightsweats for 10 years since dx of CLL at my highest wbc was 325,000. I'm now down to 18,000 for wbc in treatment for 3 years and holding but still deal with nightsweats routinely followed by cold chills. Hang in there.