CLL and Night Sweats

[CBME]

I have been on W&W for 1-1/2 years. Lymph % is 69.7, Lymph # 10.26 and WBC at 14.73. Just started having night sweats. What does one do? I am waiting on response from my doc but thought I would get feedback here. Thank you all for caring!

[lexie]

There are night sweats and there are drenching soaked bed sweats. Which are you? If the former you probably have little to worry about but an exam to rule out infection or thyroid is a good idea.

[CBME in reply to lexie]

I think I am the beginning of drenching sweats. Jams wet, sheets wet. I am 72 so no menopause cause. Didn't know thyroid could cause sweating also. Getting that checked. Thanks.

[DUKELAXDAD in reply to lexie]

I have had CLL for three years. W&W. I had the sweats. Try cutting out the sugar and carbs. That worked for me. Almost immediately. More protein, complex carbs and green low carbohydrate vegetables. Good luck.

[CBME in reply to DUKELAXDAD]

Thanks! Will try that.

[GMa27]

Make sure you know difference between hot flashes & night sweats. Night sweats help stage CLL.It's like waking up in a pool. Drenched

[CBME in reply to GMa27]

Thanks for your reply. I am 72 so no menopause cause. Jammies are wet and so are sheets. Not a pool but wet. I usually wake up wet around 4 but go to bed feeling fine. Can you clarify "help stage CLL"? The numbers I posted were from May 15.

[cllady01 Former Volunteer in reply to CBME]

CBME: I hope the following will help you as you set about to find the cause for your sweating that is an unusual happening for you. It is so true that we are all alert to what is happening that seem like our CLL is progressing and it can be upsetting. Knowing some about what the CLL Specialist looks for, can help you to communicate what is happening to you and let the Specialist help sort for you.

The following is the International guideline for treatment of CLL and Drs. in clinical practice use them but they are not set in stone, because we are all different in our CLL presentations.

I do agree that talking your PC or GP about your sweating and having a checkup in regard to that is a good way to go as well as talking with your CLL Specialist. You will note that the criteria listing (last one) suggests night sweats can mean infection somewhere in your body.

‘The absolute lymphocyte count should not be used as the sole indicator for treatment.’

For time to treat at least 1 of the following criteria should be met:

1. 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.

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

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

4. 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.

5. Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.

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

7. 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.

.

[CBME in reply to cllady01]

That was very helpful!

[GMa27 in reply to CBME]

Look up Rai Staging. Our disease stages by accumulation & location of certain side effects. Anemia, night sweats, of course blood work included, node size, fatigue....I was stage zero for 10 years till nodes popped up ...then I was stage 1. I have had hot flashes for 25 years. Pre menopause at 42... menopause at 50- I am 66. Some of us unfortunate ladies still suffer from them. My gyno said I will have them the rest of my life. Acupuncture helps along with a homeopathic remedy. 🙏

[CBME in reply to GMa27]

That was very helpful. Thanks for taking the time to reply.

[Ladylin151]

My hubby was quite ill when he was diagnosed, including drenching night sweats and significant weight loss etc. It turned out that many of his symptoms were actually from a fungal infection. What looked like extreme CLL and a head cold turned out to be "extreme" fungus and ho-hum CLL. After treating the fungus, he has been 5 years on watch and wait with little trouble. Your symptoms might be CLL related, but there are many other unrelated causes that should be ruled out as well.