Patient Comments: Carcinoid Syndrome - Life Change

Question:

What changes have you had to make to your routine since being diagnosed with carcinoid syndrome? Submit Your Comment

Comment from: Asthmaticmom, 45-54 Female (Patient) Published: June 14

Corticosteroids caused my amenorrhea. I am on them constantly and they mess up my hormones. I found taking an herb called Vitex from a cactus plant for 3 months caused my periods to come back and be regular. I took it for the full 3 months and then I don't have to take it again until I am back on corticosteroids and suffer again.

Comment from: clide, 55-64 Female (Patient) Published: December 11

I was working in my shed in the evening. The next morning, I noticed a red pimple on my leg just above the knee. I didn't think much about it until later that day, I noticed that it had gotten bigger to about the size of a dime. I squeezed some gobs of pus out of it and noticed it was turning blackish and had a red ring around it with pain extending about 2 inches around it. I went to the walk-in clinic and the physician's assistant didn't seem too concerned and gave me some antibiotic Keflex and Tylenol-3. A couple days later it was about the size of a 50 cent piece. This time I went to the emergency room. Pretty much the same reaction; said to take some antibiotic (Bactrim) and pain killers. I happened to have an appointment with my orthopedist about another matter when I casually mentioned that something had bitten me. He took one look and immediately sent me to a colleague that very hour. When I arrived there the second doctor said, 'I need to cut that out now'. I was a little surprised because I didn't think it was that serious. He scheduled me for surgery that afternoon and admitted me into the hospital and put me on IV antibiotics. He did surgery about an hour later. I had two bites, he took about a golf ball sized chunk of flesh out of one and a ping pong size out of the other. I go in tomorrow to have him repack the holes left by the bites. Brown recluse spider bites are nothing to be taken lightly.

Comment from: sam, 55-64 Female (Patient) Published: May 20

This article was extremely helpful. Currently, I am being tested for 5-H1AA for carcinoid tumors because of elevated CgA (chromogranin) levels. I have never been so scared in my life. Reading the article at least helped me to prepare myself. However, there is a part of me that just does not want to think about or know any of this information. I have had a constant headache from all of it. Yet, information is still the best policy. You cannot make informed choices if you lack the proper information and resources to do so. Thank you for the article. Very useful.

Comment from: Hope04, 55-64 Female (Patient) Published: May 09

In August of 2011 I begin to have trouble with walking and weakness in my legs. I would have trouble getting up from a sitting position .My balance was off also. Then I would have trouble with my speech in pronouncing some of my words. I did not mind getting older, just not all at one time. I knew I should see a doctor. She referred a brain and spine doctor. She ordered MRI on lower, mid and upper neck looking for cause of gate in walking. The film of neck showed a small mass behind throat. I was sent to see throat doctor. He saw a small knot on the back of my tongue, went to outpatient for surgery while doctor was in surgery he took a look at my sinus and a small biopsy. The knot on back of tongue was fine .The sinus had carcinoma in Situ. Stage 1. I had another surgery for the tumor. I've just finished 30 radiation treatments. I still have trouble with my balance in walking. The cancer doctor says it may get better maybe not. My speech has improved some either way I feel blessed the tumor was found. They say people die with sinus cancer and never know they have. Have your throat and sinus checked. I never knew about sinus cancer, but I do now.

Comment from: Merica, 55-64 Female (Patient) Published: March 30

I have had the symptoms of carcinoid syndrome (flushing, nausea, diarrhea, sweats, etc.) but have not yet talked to my doctor about it as it's been diagnosed before as gastroenteritis, IBS, etc. I've had times of remission lasting between four and 130-some days. I've kept a journal for years so I can go back and see its track record. Should have bought Imodium stock I suppose. I'd like to get all my symptoms into one basket at last. Plan to discuss with my doc at next visit.

Comment from: Nana, 55-64 Female (Patient) Published: July 19

In 2009 I had a carcninoid tumor which had mastetised into two tumors in my small intestines. The only symptoms I had were caused by the blockage. a year later I had a tiny tumor removed from my liver by ablation. I also have the carcinoid syndrome. My main symptoms are tiredness and light headedness. I have been treated with monthly 20 mg Sandostatin injections since the initial surgery. In 2011 I had to have my gallbladder removed due to gallstones. Diarrhea has been an issue since then. I have been able to manage that reasonably well with Cholestyramine. I feel pretty good most of the time - by the grace of God!

Comment from: Kim, 45-54 Female (Patient) Published: March 28

I'm a radiation therapist. I treat cancer patients with high doses of ionizing radiation. I have carcinoid syndrome. My symptoms include diarrhea, abdominal pain, bloating, gas, GERD, flushing, increase sensitivity to airborne allergens and insect bites (wheezing/shortness of breath), sporadic increases in blood pressure, and depression.

Comment from: Jan, 65-74 Female (Patient) Published: May 03

I have had carcinoid syndrome symptoms (I call them attacks) since 2004 or 2005. Additionally, I will experience extremely red hands and a tingling, a scratchy tongue (not swollen that I can tell because I can swallow), right under my ear lobe (sometimes right, sometimes left) will swell, lightheaded, then the diarrhea will start. This will last 30 minutes to three to four hours then it's gone. Oh, and it always starts with a meal. I will have only taken one to two bites when I can feel my face heating up. It sounds in so many ways like an allergic reaction to something, but I don't think it's anything I am eating because there is a time lapse from the last regular meal. I have briefly discussed it with my doctor, but I dismissed going for further tests. However, since my last "attack" lasted three and one-half days, I think it's time. Also I went a whole year without having an "attack" and I generally don't have any more than six or seven a year.

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Comment from: Lutz, 45-54 Female (Patient) Published: November 30

When I lay on my left side I feel like there is a lump right below ribcage. It's swollen and tender. I have flush symptoms and I have a bad coughing spell only once a day. I was having cramps in uterus area with some loose stools. Strange symptoms. I hope someone can help.

Comment from: Janey, 45-54 Female (Patient) Published: May 03

I had a carcinoid tumor removed from my rectum in November, 2010, and another in September, 2011, and am having a third removed this week in May, 2012. I have the carcinoid syndrome, with all the symptoms listed, but this time I am so wiped-out. I am extremely tired. I am also, getting pretty tired of these "little surgeries." Will it ever end?

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