Night sweats and when they are bad enough ?

[NannyDe]

Waking up with sweat in creases of legs , neck, arms , breast . I have never been able to sweat like this ! My cancer doctor says it is not bad enough unless your waking up and changing clothes and bedding to get treatment. Like I said I never could sweat much before this ! Does everyone go by these rules ?

[TimHB]

My night sweats were drenching - soaking through the sheets and bedding. And I was as wet as if I'd just stepped out of the shower. I'd have to get up, towel off, change the sheets and do it all again a couple hours later. On nights like that I would just wrap myself in towels at bed time. Night sweats were one of several symptoms that indicated I was ready for treatment - in my case I had swollen lymph nodes in my neck and abdomen, sudden weight loss of 15 lbs, debilitating fatigue and general flu-like symptoms. I hope your doctor is a CLL specialist and not just a general physician or oncologist. You can find a specialist near you or for a video consultation through the CLL Society website. cllsociety.org/toolbox/cll-...

[NannyDe in reply to TimHB]

Thanks , I see a Onocology Hematologist at a cancer center. I don’t know how good she is . I might look into a new doctor lol .

[lankisterguy Volunteer]

Hi NannyDe,

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If you want to see videos of CLL experts describing when they believe treatment is

appropriate see this Pinned Post:

healthunlocked.com/cllsuppo...

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You can see several previous discussions on night sweats by clicking the links in the "Related Posts" box on this page:

Related Posts

*Prelude to night sweats?

healthunlocked.com/cllsuppo...

*sugar and night sweats? healthunlocked.com/cllsuppo...

*Night sweating healthunlocked.com/cllsuppo...

*Not just night sweats healthunlocked.com/cllsuppo...

*Night sweats: too early? healthunlocked.com/cllsuppo...

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If you are interested in getting a 2nd opinion from a Cll expert doctor at no cost and no travel from you home, please follow this link:

cllsociety.org/cll-society-...

Len

[cajunjeff]

Drenching night sweats for more than a month are one indication for treatment in the iwcll guidelines which I have linked for you below.

These are guidelines, not hard and fast rules. A good cll doctor is more likely to look at the whole picture than one isolated guideline. I think when many of us treat its due to a combination of criteria. I did have drenching nights sweats prior to treating, I was changing tee shirts frequently during the night.

My night sweats came after my lymphocytes had doubled in 6 months and my hemoglobin had dropped bellow ten, two other indications for treatment. It was an easy call for my doctor to treat me at that point. He might not have suggested treatment had all my labs been normal and my only issue was night sweats.

Your doctor's comments about no treatment now might have referenced the severity of your night sweats, but he was more likely looking at the whole picture and how you were doing overall.

It would be typical if, in conjunction with your night sweats, you might be meeting other treatment criteria too such as weight loss, falling hemoglobin and platelets and rising lymphocytes. If you are not having those problems in conjunction with your night sweats, there could be other reasons for them than your cll. If your labs are moving toward treatment guidelines, I think treatment will come soon enough for you. Here are the guidelines:

Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.

Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 109/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.

Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.

Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.

Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 109/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.

Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.

Symptomatic or functional extranodal involvement (eg, skin, kidney, lung, spine).

Disease-related symptoms as defined by any of the following:

Unintentional weight loss ≥10% within the previous 6 months.

Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).

Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.

Night sweats for ≥1 month without evidence of infection.

ashpublications.org/blood/a...

[Shedman]

The last week has been bad for me — of excess heat / humidity; I’ve taken to sleeping on a towel to improve things.. Drenching night sweats are as others describe: seriously wet.

Be aware that one symptom of low vitamin D is excessive sweating — have you ever had your vitD level checked? (Not that current blood test bottle shortage is the ideal time) Else, given that we are advised to reduce sun exposure (CLL gives us ~8x higher risk of skin cancers), do you take any vitamin d supplement?

[NannyDe in reply to Shedman]

Yes I have been taking D3 for a couple years now. Sorry to hear you are having such a hard time with your night sweats . This CLL is not something I ever thought I would have . In fact I never heard of it before.

[Shedman in reply to NannyDe]

It is a strange thing this CLL .. odd to learn about it first hand, yet struggle to explain it to others.. it defies simple explanation for most. My sweats are within bounds — I have experienced the sweats of others, and talk of same on here. Drenching is the word.

I’ve suffered last few days.. with a suspicion that my remission is maybe not going to be very long; trouble is, CLL is a blood malignancy, so we can suffer with excess cold or excess heat at any time.

[NannyDe in reply to Shedman]

Yes I have experienced some of that too . I am still watch and wait, never had treatment. It is nice to have information from ones like yourself that have been through more so I can get some idea of what’s going to happen.

[lankisterguy Volunteer]

Hi NannyDe,-

I was having problems with the website yesterday and since it is fixed today, I have edited my original reply and inserted the links I had to omit yesterday.

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I agree with cajunjeff that many different issues weighed carefully by a CLL expert are usually present before treatment is needed. If you follow this link you will see and hear some of those experts describe the decision process. healthunlocked.com/cllsuppo...

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In order to deal with low Vitamin D3, is is important to be tested from your blood to determine the proper level of supplementation. I had to take 5,000 IU daily for over one year to get my levels adequate, then later my levels went too high and I had to dramatically lower the dose. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

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If you are interested in getting a 2nd opinion from a Cll expert doctor at no cost and no travel from you home, please follow this link:

cllsociety.org/cll-society-...

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Len

[jerard59]

My specialist always said when quality of life deteriorates then we would start treatment. Numbers are not the only thing. While I never had the drenching night sweats I'd have minor sweats once in a while. If you have no other symptoms then I won't be concerned. I started after 3+ year on W&W when I began to get fatigued and lymph nodes started to swell and were painful. It was funny on my visit I intended to discuss going into treatment and when he came into the room after see my blood numbers and my screening answers that day he came in and said he believed it was time. So in summary quality of life should be your guide, not any one symptom or number on a test. Good luck on your journey.

[goldstream]

NannyDe, I had night sweats on-and-off for about 4 years before I got treatment. I only ever had the huge soaking sweats (change the bedding sweats) a few times; mostly they were sweats where I would wake up, towel off a bit and go back to sleep. The oncologist considers a number of factors in addition to night sweats before treatment. One other thing to remember is that if you are fighting any secondary infection (other than CLL) you will get more night sweats as well.

[humaniquarian]

sounds like it may very well be time for treatment, The weight loss is assuredly a factor . It's considerable to not "run out the disease" too long, If treatment is looking imminent .my perspective is to not wait too long. actually sooner the better and inevitable I don't think it serves any purpose. Postponing treatment a month or two des not do any appreciable good and in some cases makes recovery more difficult. Will this be your first line treatment??

[humaniquarian]

second response by humaniquarian . Let me amend my first response because I mistakenly thought you had suddenly lost 15 lbs (someone else's symptom) night sweats alone are not necessarily cause for treatment . you do want to see blood tests, but I do stand with my perspective on not waiting too long when symptoms begin showing. Consult closely with your MD

[wizzard166]

Hey Nanny

I can relate totally to your question, because us newbies always learn the major things to look for before treatment is recommended. One is too low Red Blood Cell Count (affects Oxygen level); too low Platelets (affects blood clotting ability, so you don't bleed out); too many infections (so you don't die); and severe night sweats (for some reason not a good thing)

I too like you have noticed real heavy night sweats, but apparently not enough to be considered a major sign. Others have talked about waking up in Pools of sweat. What the heck is a pool of sweat? You actually see a little lake in your bed? Thats impossible. So I guess it means, as my doctor said, your clothes are drenched and you need to change them. Unfortunately, or fortunately, I sleep with no clothes on; so, I'll never know I guess if I have real night sweats. I can say that my hair is drenched so much, that it feels to my fingers like when I finish my shower and havent dried my head yet. Is that the equivalent of Pools of sweat?

I havent worried about the sweats I have, because my RBC and Platelets although lower than normal are not yet "too low", and real fortunately I have not been getting regular infections. My Immune blood numbers the IgA, IgM, and IgG are now well below normal, I produced no antibodies from three vaccine shots, but thankfully am not getting sick.

Carl