sweating

[Islandvibes]

recently dx with CLL/SLL on umbruvica for almost 2 months Having profuse sweating 24/7 Can’t sleep due to sweats occurring every 30-60 minutes for last 2 months Anybody have this experience and does it improve cuz I’m tired and irritable 😳

[AussieNeil Partner Administrator]

What does your specialist say about your sweating?

How are your blood counts changing, in particular your haemoglobin, platelets, neutrophils and lymphocytes? Are there any other counts out of range? Are you experiencing any cramping?

Neil

[Islandvibes in reply to AussieNeil]

I don’t return to oncologist til first week of sept for my 2 nd set of labs I’ve called to ask for help with no reply I’ve found that increasing fluids may help some Last nite first time 2 hours sleep for first time in 3 months Yes I was having cramps but increased salt and potassium and seemed to resolve Do u know if BP med Clonipine helped My GP and Onc Md are not replying when I call for help( I’m so pissed ) but I’ve been contacting umbruvica nurses and joined a support group as I quess I need to find my own help

[lankisterguy Volunteer]

Hi Sweating,

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I see you joined us yesterday and have confirmed that you were diagnosed with CLL/SLL, and are having a possible side effect of Imbruvica / Ibrutinib. As AussieNeil suggests, your first action should be to contact your doctor, and hopefully he/she is a CLL expert that has lots of experience with CLL and Imbruvica. If not and you are in the USA, you may want to seek a 2nd opinion here:

cllsociety.org/programs-and...

or here:

cllsociety.org/newly-diagno...

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Depending on which country and health system is involved, your doctor may be able to switch you to another BTK inhibitor like Acalabrutinib / Calquence to see if that reduces your problem.

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Also, you may want to read the past postings included in the box on this page labeled:

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Len

[Islandvibes in reply to lankisterguy]

Thanks so much for reply I’ve joined a support group and heard about 2 nd opinion

[Suzie42]

I am on ww with CLL in the last year or so i have had sweating like you, about 50 times in 24 hours they last about 5 mins and are very uncomfortable, my hair gets completely wet. I have told my Haematologist, but because its not just night time sweats he is not bothered. I have to drink loads of water so i dont get cramps

[Islandvibes in reply to Suzie42]

I don’t understand why this isn’t being taken seriously Lack of sleep is serious Can’t seem to sleep during day either I’ve seen a slight decrease if I keep fluid intake above 132 oz Thanks for your info If I find anything else I’ll let u know Of course I have fans Lay on towels to soak up sweat but if room to cool just damp and cold but still sweating

[Suzie42 in reply to Islandvibes]

It doesn't matter what I do, whether its freezing cold or boiling hot, the sweats come regardless. Something of interest though, I recently had a severe skin reaction to an antibiotic and for the 5 days I had it I only had 3 hot flushes. Everything then went back to normal when rash subsided.

Yes please, if you come across any info to help our problem, please share 🤞for you

[Big_Dee]

Hello Sweating

I have had both what I call "night sweats" and "day sweats". The "night sweats", we all know about because doctors talk about as a symptom of CLL. The "day sweats" are bad but not as bad as night sweats. I calculated that my worse, I loss about 4 fluid oz of water a night when bad. The day sweats however varied from soaked shirt to sweat droplets on my brow. The sweating is uncomfortable but there are still work-a-rounds. A lot of CLL patients feel like there internal thermometer is broken. I know I do. My "night sweats" went away a month after having chemo treatment. I "day sweats" never really went away, just subsided in frequency. Blessings.

[Islandvibes in reply to Big_Dee]

Yup that’s me but have increased since on umbruvica I am trying to deal Thanks for reply