Systemic Inflammatory Syndrome (SIS) ... - Advanced Prostate...

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Systemic Inflammatory Syndrome (SIS) in Advanced Prostate Cancer

32 Replies

When I was first being diagnosed, my inital presentation was fever, night sweats, pain all over my body and high blood inflammation markers such as ESR. Because of these symptoms, the diagnosis of prostate cancer was delayed as we suspected other causes. When the symptoms started to appear, I was taking NSAIDs almost non-stop and that worked pretty well to reduce the pain and fever. Within a week of starting treatment, these symptoms went away. When I was finally diagnosed with prostate cancer, my first MO said that my fever, night sweats and inflamation could not have been caused by a "solid tumor" cancer such as prostate cancer.

This appears to be incorrect as there are a small, but signifiacnt number of prostate cancer patients who present with the same symptoms as I had. According to an article on the subject entitled: Inflammatory Prostate Cancer: an Underestimated Paraneoplastic Clinical Manifestation "the incidence of inflammatory syndrome in metastatic prostate cancer seems to be strongly underestimated" ncbi.nlm.nih.gov/pubmed/161...

Here's another article on the subject for anyone interested:

researchgate.net/publicatio...

According to the article, these symptoms can present at intial diagnosis before treatment or when the cancer is progressing.

I am curious to know if anyone here has had these symptoms, either before treatment started or when their cancer was progressing. Please post.

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32 Replies
pjoshea13 profile image
pjoshea13

Gregg,

It's good to see another post on inflammation, although my concern is the inflammation we are not aware of.

-Patrick

in reply topjoshea13

There are some blood markers for inflammation such as ESR, CRP, and PV that help us to detect inflammation that we might not be aware of. Although mine had gotten to the point where I was aware of it, I probably had rising blood markers before then that wouldn't typically be checked (I specifically asked for mine to be checked). The only problem with these blood tests are their non-specificity.

greatjohn profile image
greatjohn

hmmm.

for several years before diagnosis and through early treatments I ALWAYS had what I called "chills" at some point in the afternoons....usually for a few hours. Often I would take an Ibuprofen or something for it. I also had frequent night sweats. I used to sleep with a towel on top of my pillow.

NOW, After 5 years into the "journey"....while people complain of "hot flashes" and such from Lupron and Xtandi (which I am on)....I do not have the afternoon chills nearly as often (I assume, fever related) and I don't usually wake up with night sweats. I do wake up hot every now and then. I wonder if I have this type of Prostate Cancer. My urologist (first) and then my oncologist said when I asked about the fever/chills and night sweats...that it had NOTHING to do with cancer.

Now I'm nonplussed. Also feeling like I didn't like reading that the outcomes are usually WORSE for people who do exhibit this type.

what a ride, what a journey, what a "box of chocolates" life is.

gJohn

p.s. I've also had lower back pain for the past 6 or 7 years also...but I figure it's from herniated disc they found...still have no Mets in spine...so I wonder if that is connected.

in reply togreatjohn

I do wake up with hot flashes and sweating as a result, but that is nothing close to what was going on before diagnosis. Back then I would wake up with my pajamas completely saturated with sweat to the point that the bed was also wet where I was sleeping. This happened every night without failure. My pillow would also be soaked. The only other time this happened was when I had pneumonia.

In the second link of my original post, they discuss a case study of someone presenting with these symptoms. They treated the guy with antibiotics thinking along those lines, but of course it didn't work.

greatjohn profile image
greatjohn in reply to

that sounds like me...I used a towel..but my shirt (I wear a thick t-shirt to bed) and my pillow would get wet..(hence the towel). Did you also get fever with chills at any point during the day?

in reply togreatjohn

Now that you mention it, I used towels too. I think I'm trying to forget that terrible experience. I did get fevers/chills during the day, but taking the NSAIDs suppressed the fever for the most part. Overall, the NSAIDs I was taking were making a big dfference for me as far as my pain and overall comfort. Without them, it was even more difficult. Another thing I noticed was I felt the best in the morning when I got up, then would slowly get worse during the day. I decided to fly to Europe while this was going on and ended up not getting sleep for over 30 hours. This had such a debilitating effect on me that I could not walk more than 30 feet without sitting down for a break. I had to return immediately with wheelchair service the entire way home. I've never been so scared in my life.

greatjohn profile image
greatjohn in reply to

I've printed up some of this about SIS and I am going to confront my oncologist about it on my next visit in just a couple of weeks.

hmmmm. It seems so many people know SO little about the nuances of prostate cancer...including urologists & ONCOLOGISTS who specialize in them.

John

in reply togreatjohn

It's funny though because I think all the "book knowledge" doctors have can often get in the way when something is out of the ordinary. As far as I know, they are taught that only "liquid cancers" such as Lymphoma or Leukemia can cause fevers. In general, this is true. However, it is not absolute. So my doctor's attitude was "no this is not possible" whereas my know-nothing-about-cancer attitude was "hmmm, this is probably not a coincidence, maybe this has something to do with the cancer." Then it goes away after successful treatment. Logic tells me it's not a coincidence.

greatjohn profile image
greatjohn in reply to

you're the first who has finally confirmed my suspicion.

thanks,

John

in reply togreatjohn

This is a good discussion, I'm learning more about this. I also think we have to step back a little bit and always ask ourselves the important question: How does this inform my treatment decisions? I don't know if there is something I would do differently because of it.

But I do think we should keep an eye out for recurrence of these symptoms because this can also happen when there is progression going on. It may give us another indication we can look at.

michael00 profile image
michael00

For a year before diagnosis i had back pain

Xrays showed nothing and spent a year with a chiropractor doing adjustments and taking advil for pain. Turned out pain was mets to lower spine

whatsinaname profile image
whatsinaname in reply tomichael00

Xrays usually don't show much. Next time do an MRI, the more advanced the better.

When I reported back pain to my orthopedist, he sent me for an MRI which showed the distinct possibility of metastatic prostate cancer. The rest is history :-)

DeanNelson profile image
DeanNelson

For 3 days I had a fever, unbelievable night sweats and pain all over my body,you couldn't touch my skin without me going through the roof. On the 4th morning I woke up and was peeing blood. I thought I had a bad UTI so I went the urologist. He did a DRE and turned me around and said your going to the OR right now...That was a year ago TODAY

in reply toDeanNelson

Thanks for sharing. Did you have stage 4 at that point?

DeanNelson profile image
DeanNelson in reply to

Yes.....bladder, bone and lungs mets..

in reply toDeanNelson

You could be in this group. Did you happen to have had any blood tests that would indicate inflamation such as ESR or CRP? Just curious.

Did they say it was caused by an infection in your case?

I had the same kind of pain all over. I remember lying in bed and it felt as if worst pain was moving around in my body. My arms and shoulders had pain too. It was really bad until treatment started. Did yours go away quickly with treatment?

DeanNelson profile image
DeanNelson in reply to

yep that exacltly what mine felt like it was MOVING...within a 3 days of my firmagon, predinsone and Zytiga it was all gone

in reply toDeanNelson

Sounds familiar. The pain was so widespread I really thought it was some kind of autoimmune disease like rheumatoid arthritis that causes inflammation. I had high ESR, but that is non-specific. But there was one other blood test that would have been high with that, I think it was C reactive protein and it wasn't high. I even had them check for Lime disease. Cancer was the last thing on my mind, but I think it was these other symptoms that threw me off.

Daddyishealing profile image
Daddyishealing in reply toDeanNelson

My dad has been fighting for a few years did chemo lupron exgeva and imuunothetapy. His psa never went below 4 . Finally he is on zyriga with prednisone and this is the least pain hes been in for years . He atarted before xmas and now his psa is.08. I hope this brings you some comfort and hope. Its great to see him so lively again i am grateful

Hirsch profile image
Hirsch in reply toDeanNelson

What surgery did you have in that emergency?

pakb profile image
pakb

My husband did. For almost 2 years before diagnosis they said he had enlarged prostate and urinary retention issues. He was catherizing. But in the last year before diagnosis he also had fevers and sweats. A couple of nights he was so sweaty and out of it that he passed out- or was shaky/feverish and would fall getting from bathroom to bed. He was very anxious as well as having pain in his back.

None if those symptoms since diagnosis and treatment. I'll check to see if he had a CRP test prior. His lovely urologist (sarcasm) didn't do a PSA until almost two years after symptoms began (he was 47 years old) but my husband's primary care may have.

ck722 profile image
ck722

I never had allergies before but for the past 5 years I sure did. Intense and nonstop. Six months after my prostatectomy, they vanished thank God. I am now one year post prostatectomy. That bag of Gleason 8 cancer was doing something and my body was reacting.

Jbooml profile image
Jbooml

I did have a profound inflammatory response affecting my skin.....I had to shower in freezing cold water to bring down the intense inflammation. This led to terrible crippling pelvic and joint pain that I treated with yoga stretches in a freezing lake using bouyancy to mske the most of my limited flexibility. I did manage to bring down the intense pain and improved my weakness. This also reemerger and persisted for my first couple months of ADT treatment especially after starting the eligard. I believe this was the metastatic bone cancers last stand...bringing it up with my doctors seemed to mystify them. The weakness was terrible..I couldnt twist or squat turn sharply or negotiate any uneven surface...eve now, as well as i feel, i balk at jumping over small obstacles. I was easily chilled even after taking very hot saunas. No question that generalized inflamation was a huge concern....BTW....and this is a very strange anecdote. 13 years ago i played a health support role in my childhood buddies PC treatment and devestating eventual death. Very traumatic to all of those who loved the man. He complained he couldnt touch wet cold glasses without developing hives on his palms. That really freaked me out....in that the disease can strike in so many unexpected ways. Like a looming dark spirit...always trying, with tricks and turns, to erode any building confidence in your return to normal.

Sunlight12 profile image
Sunlight12

Hi Gregg,

My Dad presented similarly - he had terrible night sweats for about 2-3 weeks about 6 months prior to his diagnosis, as well as lower back and leg pain and stiffness, sometimes shoulder pain (which got worse during the months leading up to his diagnosis). His ESR, CRP and ferritin levels were all high. The ESR in particular had spiked dramatically sometime in the year prior to his diagnosis. He did get checked for Lyme disease. The initial diagnosis was that he had an auto-immune condition (Polymyalgia rheumatica). Prednisone had no effect on his pain and stiffness.

I agree with you that this kind of systemic inflammation is related and important. I wonder if the night sweats are the body trying to fight the cancer. (I have no evidence for that other than folk intuition, just a thought).

Best wishes to you on your continuing journey!

-Sunlight

in reply toSunlight12

I was thinking the same thing about the fever and sweats being the body trying to fight off the cancer. I would always feel much better after a good night's sleep, but would get worse as the day progressed.

Geoff22 profile image
Geoff22

My story could be another confirmation of systemic inflamation from stage 4 prostate cancer. I am stage 4 and on Eligard. Years past I suffered from occaisonal gout. Usually caused by dehydration in the summer time. I had another attack last month in my big toe. That subsided but was almost instantly replaced by an inflammed heal. My primary care Dr. proscribed prednisone for 5 days. It solved the problem for 7 days. My knee was the next target and it was the worst of the 3. I am back on prednisone for 12 days. I don't think these 3 episodes are gout. I think it is from systemic inflamation caused by the prostate cancer that targets vulnerable tissue. I am likely to be put on Zytiga when I visit my urologist in a few days. The zytiga medication is paired with 100 mg of Prednisone (that is about double a typical prescription) I think regimen acknowledges the systemic inflamation that prostate cancer can produce

monte1111 profile image
monte1111

I had night sweats for months before diagnosis. Mostly head, neck and shoulders. Switched out pillows, put down pillow cases, towels etc. Almost same period as when difficult urination started. After 1st chemo treatment difficult urination was resolved. After about 3rd chemo night sweating stopped. What a relief! Hot flashes continued (now mostly resolved by Gabapentin). Diagnosed with extensive bone mets and abdominal lymph nodes. Next CT scan showed that lymph nodes had returned to normal size. I was never told, but jumped to the unscientific conclusion that the night sweats and the lymph nodes were cause and effect. Could be totally wrong.

Cynthgob profile image
Cynthgob

My husband had these same symptoms! Fever , ache , flu like symptoms. His stupid dr didn’t test psa. It took 8 months for a diagnosis. Advanced prostate. 4300 psa .Don’t doctors know this ?? Frustrated. Some doctors shouldn’t be in business.

in reply toCynthgob

Yep, you can add my first doctor to that list.

Aussieguy1 profile image
Aussieguy1

Hi Gregg57

I am low grade Gleason 6 with 80% adenocarcinoma In two core samples and 5% in one other, this was out of 10 core samples. Encapsulated within the prostate. Just responding to inflammatory markers. Months before diagnosis I was suffering from nausea, night sweats, fatigue, aching joints in lower back, left knee and left lateral below knee pain. This pain was extreme, especially after work and in bed at night. My ESR was elevated, my haemoglobin was low and neutrophils. My treating general practitioner gave me a prescription for meloxicam (Mobic) and sent me on my way. This pain has mostly resolved with time, no longer require the mobic. Still have waves of nausea on some days and fatigue on most. General practitioner dismisses that it’s related at all to Gleason 6 diagnosis but can’t inform me what causes the symptoms. ESR back to normal and neutrophils, haemoglobin still low.

GP even with family history was reluctant to check PSA, when done was 5.8. Then referred to urologist. Both father and brother prostate cancer.

I realise I am extremely lucky compared to yourself and others. Just was interested to read about your SIS.

I wish you only the best care on your ongoing journey with this disease. I also thank you for sharing your insightful and helpful story with others.

Ian

ArabianNights profile image
ArabianNights

Hi gregg57. I'm just stumbling on this post and wishing I had seen it and the links several months ago. My dad has all these symptoms - high CSR, ERP and ferritin level and daily high fevers. The fevers come with very intense pain outbreaks that are full body.

All blood markers are non-specific and he was tested for every infection and autoimmune disease under the sun. He was put on antibiotics several times. Two oncologists said this was all unrelated to prostate cancer. After reading this, it seems that it is a symptom that many more people have.

Unfortunately he is in later stages of cancer and we have ended all treatment. His bone marrow is too compromised to do many of the options available.

His fevers come daily and are hard to manage and bring down. Since reading about the Naproxen Test, we have begun twice daily naproxen which has helped greatly along with dexamethasone to stop inflammation.

in reply toArabianNights

I'm not sure you can do anything specifically about this because it's an effect of the cancer itself. I'm expecting that when I run out of treatments someday, I may have this again. As far as I know, the only thing you do is take an NSAID.

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