Last Friday I started to feel lousy after a full day at Duke centers (which warned not to come to their clinics with visitors due to risk of getting flu etc). My symptoms were pain in the left side of my neck and soreness and achiness in my leg, one knee and some lightheadedness and mild headache. On Saturday the 9th, I noticed that the pain in my neck was reduced but the supraclavicular lymph node on the left side (connected to abdomen and thorax) was swollen and fairly hard. Since then I improved a little each day and feel pretty normal now but the swelling in the lymph node is still there. I read websites about this but they dont seem to talk about it being ordinary viral infections in that particular node area.
Has anyone else had something like this? I'm doing an ultrasound on Wednesday. My two doctors said it's hard to conceive that a tumor would grow like that in one day, with a psa of .01 but why aren't the websites listing, "ordinary viral infection" for that supraclavicular, left side, node?
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GeorgeGlass
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Actually, this is the purpose on lymph nodes. My kid when he was young had a bug and for a month had these hard pearls of lymph nodes down the side of his neck as the body was doing it’s thing. I did take him to the doc. As I was concerned. All I remember was it wasn’t a concern.
thanks kv. Agreed. Its probably a virus because it coincided with my day in the hospital that had a high rate of flu floating around. We'll see. Either way I'll deal with it and try to be positive.
Okay my son remembers it all quite clearly. After I was told what it was, my Dad told me about his mother using a castor oil flannel on him when he had swollen nodes on his neck. So I tried it, piece of flannel soaked in castor oil place on the effected side with plastic on it and then a hot water bottle on top of the whole thing. Kid watched cartoons to pass the time. Took about 4 days and they were gone. Just our experience for what it’s worth. Hope it goes away soon, GeorgeGlass.
Yes, about three hours before I started feeling bad. The numbers didn't show anything overly concerning to my MO on Monday (3 days later). I may have picked up a virus in that lab area where a lot of sick people are being treated.
George, I got the same warnings about flu on recent doctor visits to Duke (Raleigh), UNC, and Cary. Due to my CLL, I have sub-normal immunoglobulins (thankfully, nutrophils are still holding up OK), so I have made it habit everywhere I go to avoid obvious sick people, young kids, and to be a stickler about washing my hands whenever i think I might have touched a possible bug location. When I go to medical facilities, I make it a point to pick an isolated location in the waiting room, bring my own reading material, and move far away from anyone who might come in later showing the slightest signs of a cold, etc. Since I am a gym rat & visit my local Y daily, I also make sure to wipe equipment before and after use and promptly leave any area with obviously sick people there. (What are sick people doing at a gym in the first place?? Sharing their misery?)
Since I've never had problem with colds. viral infections, wound healing, etc., I haven't had to be paranoid about it (yet), but I have over the years become much more careful.
Be Well - cujoe
PS Let us know what you find out from the ultrasound on Wednesday.
George, In addition to PCa, I also have blood cancer CLL. One of the symptoms of CLL (and it's sister form SLL) is enlarged lymph nodes. I initially went to a doctor because of an enlarged node on the side of my neck. I soon became aware of many others in my neck, jaw, and clavicle areas. I was "officially" diagnosed via a surgical biopsy on the neck node. That was 12 years ago and I have never needed treatment (so far) and other than the enlarged nodes would have never known I had it. (In fact, the nodes have almost completely dissipated over those 12 years.)
CLL is disease of the B cells in the blood and causes them to "hang around" long after they are supposed to die off naturally, resulting in elevated WBC/ALC lab numbers. Many people with no other classic symptoms are initially diagnosed with CLL as a result of abnormal CBC results, usually elevated WBC. If your WBC was 3.3 that would put it at the low end of the range and make it improbable that CLL was a cause for the enlarged node. My WBC was about 16 at diagnosis and got to near 30 at one point. (At my last lab in Dec, it was back in the normal range for the first time in 12+ years.)
I was doing a 20 question routine with you to avoid spooking you out about the prospect of a second cancer!! (Altho', if you had to have a second one, CLL wouldn't be a bad one to have. About a third of patients never need treatment and current/evolving treatments are near curative for some.)
Hoping you get good reports from the scan and biopsy. Keep us updated. Be Well - cujoe
Wow. Thanks for the info cujoe. I'm glad to hear at the blood cancer is not getting any worse that's good news I guess for me from some of the articles I read if you have the swollen lymph nodes in your over 40 years old it looks like it might be an endocrine thing but I don't know somebody else replied in this thread that said that. Usually happens if you've been on ATT for a very long time but I don't know what a very long time means exactly I've been on it for about two-and-a-half years so maybe that doesn't qualify as a very long time this could just be a virus I keep thinking why but it happened the day after the day that I went to the hospital so hopefully it's just the virus but let's see what happens. Take care
thanks Nalakrats. All good info. I agree. I had radiation treatment, which I regret because it was a complete failure and then the doubling rate started out at three weeks before I started Lupron, which is all Ive been on since then. I've been taking a lot of supplements and doing exercise often. I just think my immune system has been weak for years but I dont have evidence of that other than getting sick more than most and having low white blood cell counts for decades and some of the other blood related numbers are low too.
I think Nalakrats' explanation of your condition is right on target. I will add that, if I understand neuroendocrine cancer correctly, it is most likely to occur after a very long course of androgen deprivation that includes abiraterone acetate and enzalutamide, and even then, most patients do not develop the neuroendocrine form. If I'm right, the fact that your treatment has only included Lupron adds to the likelihood that you do not have neuroendocrine cancer and, therefore, are not experiencing pain from metastases.
I'm not highly knowledgeable about the biochemistry involved here but I would expect that the time required for neuroendocrine features to become predominate would vary very much with the initial conditions of the patient as well as with the length of time on ADT and especially, on advanced ADT. If you have neuroendocrine cancer, and we don't know yet that you do, I think that 2-1/2 years on plain old lupron is very rare and unusual, but not totally out of the question. Some few men have neuroendocrine cancer even before they start ADT.
I still have high hopes that Nalakrats got it right and your pains are due to something other than metastatic prostate cancer.
Thanks Alan I appreciate your thoughts and insights I'm going to go get a CT scan tomorrow and then go to an ENT on Tuesday so I should know more by the middle or the end of the week. either way I'll try to stay positive.
Just mushroom powder and Korean ginseng for immune system. What do you recommend? I don't have the reports here at the house I'm at. I'll have to check the pathology when I get back to my house.
I use to think that every ache or pain I experienced was due to Pca. Then one day I realized that the pain in my ass was my ex-wife. So now I don't worry about my aches or pains I just attribute them on my ex-wife. So George get yourself a Glass of [ ] fill in the blank and enjoy yourself.
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