Night Sweats

[Dym230109]

I was diagnosed in March 2020 and have had treatment with both Ibrutinib and Venetoclax. I am currently on no chemo drugs and may restart Venetoclax late January 2022. My blood counts have been continuously low and particulary in 2021 I had to spend time in hospital while I received anti-biotics and blood transfusions.

From time to time over the last 18 months I have had night sweats. Over the last 2-3 months, I have had severe night sweats.

Has anybody out suffered the same with night sweats and do you have any treatment for it.

Thanks.

Magnus Clouston

[SofiaDeo]

For me, night sweats is a symptom my cancer is actively growing. They go away after treatment starts. Maybe you can get restarted sooner?

[Dym230109 in reply to SofiaDeo]

Sofia,I had mild night sweats even when I was on Venetoclax. Since stopping Venetoclax the nigh sweats have become worse.

Hopefully, I am going back on Venetoclax from 19th January.

[LeoPa]

I'm confused. Low blood counts? Do you have SLL? How are your nodes? Can one have no nodes, low blood counts and severe symptoms?

[Dym230109 in reply to LeoPa]

I have CLL. I have no nodes but continue to have low blood counts, have been off Venetoclax since 25th November and may restart 19th January 2022. I continue to have excessive nigh sweats.

[Dym230109]

Thanks. Made the change.

[craterlake]

the only thing that works for me is to make myself sweat during the day ...if i do that i don't sweat at night ... in the winter it is harder to work up a sweat so i take a hot bath . check my temp . before the bath . get temp up at least 2 degrees higher : 98.6 start plus 2 = 100.6 ---- keep it there for at least 20 minutes by adding more hot water if i need to ... you can put ice on your head to keep it cooler ..... dry off , then i go lay down till i cool off ... i know a man who has CLL and he does this 3 times a week and he is off his meds and using the hydrotherapy along with a vegan diet and herbs to control his CLL .. so he does not have to do the sweat therapy every day ... it seems my body is fighting the CLL at night with the night sweats .. so i can sweat during the day on my terms or at night while i sleep ...... i don't like getting up in the middle of the night ,changing my pajamas , drying my hair etc. who knows how much this is effecting my quality of sleep . my wife never complains though including washing my pillow for me .... blessings , james

[EOTI]

It might be worth considering that your night sweats are caused by something other than CLL. I'm on W&W and was getting mild night sweats, with no other symptoms other than a few slightly enlarged lymph nodes. I knew that night sweats were a symptom of CLL, but usually in more advanced stages; it just wasn't adding up. Recently, my right lower leg (in which my calf muscles were mildly, yet persistently sore from running (or so I thought)), swelled up dramatically. It was bad enough that I had to go to the emerge, where after blood work (testing for blood clot protein fragments called d-dimer) and a doppler ultrasound, it was determined that I had a deep vein thrombosis (DVT) - a blood clot - in my leg. I learned that DVTs can cause night sweats and a fever (which I had). The clotting also spreads to the lungs (pulmonary embolism (PE), which I also had), causing coughing and eventually bleeding and chest pain. I also learned that CLL is a risk factor for blood clots - we get them more often (it would not be surprising that blood transfusions are also a risk factor?). If you have any unexplained deep tissue soreness and swelling (usually in the limbs), or unexplained light to severe cough, it might be worth looking into.

[AussieNeil Partner Founder Admin in reply to EOTI]

Thanks for highlighting that there could be another possible and potentially serious cause of night sweats.

With respect to your mention of CLL being a possible risk factor for blood clots, while it's possible to find some studies indicating this, it's an area needing more study before that risk can be considered conclusive. Dr Rick Furman commented on this in the groups.io CLL/SLL community just over 18 months ago thus:-

"Re: Are DVT and Pulmonary Edema Common with CLL/SLL?

From: Rick Furman

Date: Wed, 17 Apr 2019 08:13:34 ACST

CLL patients are typically at a lower risk of blood clots than other patients. Having a high WBC or having a malignancy does not always result in increased inflammation. Additionally, some people have published that there is a protein on the surface of CLL cells (CD39) that might inhibit platelet function and be protective."

Then we have this large study from 3 years ago, where "All patients in the Danish National CLL Registry (2008-2015) were followed from the date of CLL diagnosis to death, VTE, emigration, or administrative censoring.":-

Venous thromboembolism in chronic lymphocytic leukemia: a Danish nationwide cohort study (November 2018)

pubmed.ncbi.nlm.nih.gov/304...

"A history of VTE or second primary cancer was associated with Hazard ratios (HRs) of VTE of 5.09 (95% CI, 2.82-9.17) and 3.72 (95% CI, 2.15-6.34), respectively, while β2-microglobulin >4 mg/L, unmutated immunoglobulin HV and unfavorable cytogenetics had lower HRs. CLL patients with VTE had marginally higher mortality, which was most pronounced among patients <60 years of age (HR, 7.74; 95% CI, 2.12-28.29). Our findings suggest that markers of unfavorable CLL prognosis contribute to an increased risk of VTE; however, previous VTE or a second primary cancer is more strongly associated with the risk of VTE than any CLL-specific marker. Focusing attention on this preventable complication may improve survival in young CLL patients."

Note the huge confidence interval (CI) of 2.12-28.29 for CLL patients under age 60, the group where the authors suggested focusing attention may improve survival. Only around 30% of patients are 64 or younger when diagnosed with CLL, according to US SEER reporting.

The confidence interval is" an estimate of the amount of uncertainty associated with a sample, computed from the statistics of the observed data". We need larger studies to more accurately determine the risk, which to me, means that its something that we should keep in mind, but not lose sleep over.

Neil

[EOTI in reply to AussieNeil]

Yes, more research is needed to characterize the relationship between DVT/PE and CLL; not to imply that there is anything about CLL that is necessarily causal. Both the emerge doctor (who consulted with a hematologist) and my GP made mention of it so I thought to include it here. Certainly not something to lose sleep over; it's something that is effectively remedied with anticoagulants, especially if caught early. After a month, I was already up and running again!