Any of you guys experiencing worsening night sweats? This is definitely different to the Lupron/Eligard night sweats. I’ve been researching night sweats and prostate cancer but most of the stuff I am finding blames the low testosterone but this was never severe for me nor did they last beyond the first couple of months of ADT.
Over these last couple of months I’ve had nights where I wake up and it feels like I just came out of the shower. Drenched. I know this can be quite common with advanced leukemia and lymphoma.
I’m hoping my immune system is waking up and having some battles with my mets (and winning). Just curious if anyone else is experiencing this with progression of disease?
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Cleodman
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I had very bad night sweats (changing pillow cases, putting towels under me in the middle of the night and etc.) This was before being diagnosed and stopped after the first or second chemo cycle. The issue was most certainly the abdominal lymph nodes. The abdominal lymph nodes have not been mentioned since first Cat and bone scans.
I had this really badly at initial diagnosis. I did some research on it and came across an article about systemic inflammatory syndrome. I might have had this, especially since it went away after I started treatment. Hot flashes from ADT are much different and don't cause drenching night sweats like I had.
At the time, my inflammation markers in my blood were very high (ESR, and CRP). Not sure that is what's going on with you, but it's a possibility. Here's the post I wrote:
Cleodman, about all I can do is relate my own experience in the unlikely chance that it might be relevant. I had severe night sweats almost every night soon after starting ADT (Feb 2019) and lasting two or three months. During that period, I had very few hot flashes. Since that period, I have very few night sweats (maybe one every couple of months). But about five months after starting ADT, I've had on and off periods of hot flashes. My conclusions (at least for me): 1. Night sweats and hot flashes are not steady and continuous during ADT. 2. Night sweats and hot flashes episodes are independent.
The first few months of ADT I had bad night sweats every night like clockwork, so much sweat I had to put a towel over the bed. I think it was the body's response to rapidly falling testosterone. After dropping Zytiga at the sixth month and continuing on Lupron only, the night sweats went away, but hot flashes became a bi-daily event, also like clockwork, at 11pm and 4am. After three months off ADT, the hot flashes are gone.
If we are focusing on your treatment history and these night sweats being a possible side effect - I would agree that this is uncommon at this point. Miserable, uncontrolled sweats (anytime/anywhere but especially at night) were extensive for me in the first couple of years of treatment (Dx @ 49, now 53) until I came to your thought that it may not only be low-T, but some indicator of (positive?) immune response.
Embracing this unprovable concept (e.g., no bloodwork indicator), I began to seek out the sweat on my terms - regular exercise followed by a harsh and normally-unwise steam room experience (ultimately, 40 minutes of 10 minute cycles after I acclimated).
This worked for the sweats, likely because I simply trained my "normal" systems to not overrespond. Did it work in some sort of holistic, systemic, immunologic way? Dunno (the optimist in me says "yes"), but I can tell you that I will pursue my "thermotherapy" again as soon as I am able. It is one thing that empowered me - and isn't that what we are all looking for here?
Hey Cleodman ! I’ve been on adt with no t for over five years . The hot flashes and night sweat are still there . I’ve just landed to let then pass by . We can adjust .. Hang in there young man . THis is a fight for survival . Side effects come with the turf . Most ,have them that use adt .. Merry Christmas to your family . May you overcome the pc and live many ,any years of QOL. 🎄🎄🎄💪
My husband was diagnosed in March of 2020 with CLL and it's aggressive. He had the kind of night sweats you describe before diagnosis. Opinion of CLL specialists is that CLL is the result of sensitive scans and 39 SBRT in latter part of 2019. JIC, ask for a FISH or a flow cytometry.
How I identify and empathize with you, Cleodman. For me the hot flashes have been horrendous off and on, and now, after a 1-month shot of degarelix (already two months past), are worst at night--3-4 times most nights.
I don't know how long you've been on hormone slayer, but at the beginning I was on the double whammy of Lupron and Casodex for 6 months, and the bad hotties didn't start until 2-3 months in. However, they continued unabated, 2-3 times an hour daytimes, 6-7 times a night for about 9 months after I stopped the treatment. After a year off it, I started again with IADT (intermittent ADT), Casodex only, experimenting with short sessions of a few weeks to a month or two, sometimes daily, sometimes every 2-3 days trying to find a place where my PSA would stay low yet I would suffer less from those things. After a couple years, Casodex stopped working so have been getting Lupron injections off and on for nearly two years and have discovered that the hot flashes and night sweats continue for 3-4 times as long as the medicine, slowly reducing in intensity.
My way of coping with the night sweats has always been to have a fan on my side of the bed, a meter or two away, and when one starts, I toss the covers off and turn on the fan, and they go away very quickly.
In my post above, I forgot to mention that I take a Chinese herbal medicine that's used to reduce the intensity of hot flashes in menopausal women, and while it does not knock mine out, it reduces both the intensity and duration. I know the Japanese name (I live in Japan) but have no idea what it's called in English. However, any pharmacy that sells Chinese herbal meds should know what it is.
Cleo damn I have had really bad night sweats as well. A friend of mine told me about a dual temp mattress pad from sleep number. Prior to purchasing this I would sweat through a couple pillow cases, my underwear abs soak the sheets. Now they have stopped. There’s different levels you can adjust the coolness to assist. I’ve found some nights I need it on the highest level and some nights at level one.
For anyone going through night sweats I would highly recommend the purchase. It’s not cheap, but what price would we put on a good nights sleep.
I just read your current post and you are now in my prayers by name. You ha e already been as part of this group. I was diagnosed fairly young as well at 51. Keeping the faith for us all as we deal with this disease.
If you need someone to talk with feel free to send me a chat.
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