carcinoid cause aching pain

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carcinoid cause aching pain

by natbug on Thu Aug 13, 2009 12:00 AM

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Hi, I am 31 and I have elevated serotnin blood, a little elevated chromogranin a, normal 5hiaa. I have chest pain flushing, sinus tachyardia, ears get really hot. In the past I have had negative scans, but now I have a cyst on my liver cyst on on only ovary,I also have a nodule at the end of my esophgus. The results of nodule are not in yet. this has been going on for 8 years or more. Lately I feel like I am aching like I got the flu but I do not. The pain is very harsh. Do You think it is carcinoid? I have told probably, but I need to find it so I can get better. Does anyone else hurt like this? It makes me so weak.

RE: carcinoid cause aching pain

by SaraF on Tue Sep 15, 2009 12:00 AM

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I am 33 and have carcinoid.  It took me 4 years to get the diagnosis.  For 3 of those years it was known I had a high 5hiaa but it was not considered in itself to be diagnostic.  Scans for me were negative and continue to this day to be negative but I have developed carcinoid syndrome and my chrom A is off the charts.  Sandostatin has been a life saver!  I too had flushing, GI issues, sinus tach ( average resting rate of 120 but meassured up to 170 on holter). shortness of breath  and body aches.  For awhile arthritis was blamed as was my asthma for the shortness of breath.  The thing was neither responded to normal treatment.  I now take pedinsone in a low dose every day as it works to treat both.  They have a new theort on the location of my tumor as I am known to have larger than average ovaries which was thought to be PCOS but I have no other syptoms so I am going to have a biopsy to check.  Don't give up it is a long road and many doctors don;'t put the peaice together if they don't fit the text book presentation.  I know more than one doctor thought I should seek therpy for mental health issues but I KNEW it was not in my head and something was seriously wrong.  Listen to your body and keep searching for the right doctor!  Best of luck! Sara

RE: carcinoid cause aching pain

by natbug on Wed Sep 16, 2009 12:00 AM

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Thank you so much fo writing me back. What are the side effects of the sandostatin and does help with your tachycardia?

RE: carcinoid cause aching pain

by Sam77 on Wed Nov 11, 2009 07:27 PM

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Hello, I am 37 years old and have had neuroendocrine carcinoma with liver mets, I was diagnosed June 20th 2008. I had my gallbladder removed and would experience severe pain in the upper left quandrant for over 9 - 10 yrs since. The doctors had considered I had esophogial spasms and used nitro spray for the pain which helped. I was than referred to a liver specialist in January 08 and had a biopsy which came back negative and CAT scan was re-done after the 3 month period and a change in the scans had confirmed, cancer. I had a total of 9 tumors on my liver and they had found the primary tumor near the small bowel. Nov /08 5 tumors were removed from the left side of my liver and 3 remain on the right and one near my lymph nodes, a portion of my small bowel was also removed. they stopped the circulation on the right side of my liver. i am currently waiting for PET/CAT scans which they will decide if they will remove the right side of my liver. I cannot take sandostaton because it causes cramps to my stomach. I do experience flushing, sweating, nausea, same severe pain and also fatigue. I also experience palpatations and chest pain (not bad though). I usually try not to take anything for the pain, but when it does get its worst i do go to the ER. Get plenty of rest when you need it, I didn't when I was first diagnosed, wanted to keep working, working, only made myself tired, get your rest.

God bless you

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