Small Intestine

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Small Intestine

by Janetl on Sat Apr 16, 2005 12:00 AM

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I am looking for other people who have small intestine cancer, as it is very rare and there is very little information about it. I was diagnosed in June, 2004 (after 3 years of symptoms) with duodenal adenocarcinoma. I had a resection, followed by chemotherapy and I am now in remission!! Please write if you have this disease or know someone who does.

Duodenal Cancer

by Bonniej on Fri Jul 15, 2005 12:00 AM

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Hi! I read your message. I was diagnosed with duodenal adenocarcinoma in April of 2004. I had a Whipple procedure, followed by chemo and radiation in the fall. We thought I was fine until February when I went back for a CT scan. They discovered that it had metastacized in my liver. The doctors have pretty much told me there's nothing left to do medically. I was on a Phase I study, which had little effect. After six weeks of being off that, I had a CT scan yesterday. One of the tumors in my liver had grown from 1.8 cm to 2.4 cm. The other two were stable. Now I'm struggling with what to do next. If you know of any treatments, please let me know.

Duodenal Adenocarcinoma

by Janetl on Fri Jul 15, 2005 12:00 AM

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Bonniej: I was so sorry to hear about your cancer spreading to your liver. Was there lymph node involvement when you had your surgery? How was your cancer found? Sorry for the questions, but I am curious about other people, since this is such a rare cancer and there isn't much data available. I was lucky to not have the whipple, as my cancer was further down the duodenum. My surgeon even did an ultrasound of my liver during my surgery to make sure it hadn't spread. I also have a liver function test (blood) done every 3 months - did you ever have that done? Have you checked into cancer centers, such as MD Anderson in Houston? They would be the best bet for any studies being done. There is a list of all the cancer centers at the usnews.com website. The only other thing I could recommend is the herbal/nutritional route; I have been reading a lot about it on the internet. There are links to websites at the plwc.com website. I am thinking of trying some of the herbal supplements myself. Other than that, I will pray for you - I have found my faith has been my saving grace. Please keep me posted on your progress. I know it must be very frustrating, and especially since there just isn't much attention paid to this type of cancer. But it seems like there are a lot more people getting it now - maybe we could start a movement for more research! Blessings, Janet

hi

by Eclansingmi on Sun Jul 24, 2005 12:00 AM

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Hi, I know of another duodenal group as well. The following link is on yahoo. It's a new group, but growing by the day. http://health.groups.yahoo.com/group/duodenalcancer/ Sincerely, Nicole

i Know of a Group With This Disease

by Eclansingmi on Sun Jul 24, 2005 12:00 AM

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HI, I started a group called duodenal cancer in memory of my father in law. It is located at http://health.groups.yahoo.com/group/duodenalcancer/ Sincerely, Nicole

Duodenal Adenocarcinoma

by Bonniej on Mon Jul 25, 2005 12:00 AM

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Hi, Janet! Thank you for your response. You asked several questions that I wanted to answer. No, I had no lymph node involvement (good news!). They found the metastases when they did my 3-month ct scan. I really had no syptoms and was feeling great. We discovered the first cancer after I had been waking up at night with a dull pain in my stomach. Plus I was itching. The pain wasn't bad, but I wasn't sleeping well, and was finding it hard to function at work. They removed my gall bladder, but the itching got worse. They kept saying "It just has to work its way out of your system. It will stop." Well, it didn't, and I became jaundiced. At that point I was sent to a gastroenterologist who discovered the cancer. Yes, I get regular liver function tests. Last time the enzymes and one other (can't think right now) were elevated, but the doctor wasn't concerned about it. (Easy for him to think, eh???) I've been going to Mayo, although I'm currently waiting to hear from the University of Pittsburgh Liver Cancer Center. They are looking at my ct scans. Tomorrow I have an appointment with an herbalist. I'll let you know what I find out. I've been eating more vegetables and taking a number of supplements and herbs, but I'm hoping she can help me put together a plan. Thank you for the website link. My doctors keep telling me I have months, not years, to live, but they don't know me. I have way too much to do with my life to last only months!!!! Because this cancer is so rare, I figure they have a small sample from which to predict lifespan -- I, for one, intend to broaden their sample and their prognosis! Keep in touch. I'll be thinking about you and putting you in my prayers. Bonnie

Duodenal Cancer

by Darcy on Thu Dec 29, 2005 12:00 AM

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Hi Bonnie, I am writing to find out about your symptoms.What was the itching? did you itch all over?/ is that a symptom of gallbladder? My husband was diagnosed with duodenal cancer a month ago. I have had some gallbladder problems but my scan said I was fine and I itch like you, I thought it was allergies, I am praying for you, Pray for my husband as we get started with chemo. thanks darcy

hi Janet

by Mlinsen on Tue Feb 21, 2006 12:00 AM

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I am a 31 year old male and was diagnosed with adenocarcinoma of the small intestine about a week and 1/2 ago. I went to the ER with a bowel obstruction. The tumor was in my distal ileum and one of four lymph nodes was involved. They resected it and I feel great. I am now awaiting my PET scan and chemo. Would love any ideas on a good oncologist somewhere in the country, as this is such a rare disease! thanks so much, Mike

RE: hi Janet

by advice999 on Mon Apr 06, 2009 12:00 AM

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Hi,

I saw your posting and was curious how you are doing and if you have found any information on adenocarcinoma of the small bowel, did the chemo benefit you? Did you have any other disease that caused the cancer? I  am about to go on 5fu and am curious to see if it is the right thing they usually treat colon cancer with this since small bowel is so rare

RE: Small Intestine

by jonathonwoods on Mon Mar 21, 2011 03:41 AM

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hello im a 19 year old guy  and my names jonathon w
after  2 weeks of  new diet and exercising i noticed a dull pain and a inflamation of the lower left  abdomin  around the mid section
4 weeks later its still there :(
the drs  said   it was no ceptic ulcer or  hernia  and that in 1 week ill get scanned  :(
im soo scared im shaking i hate the unknown 
did u have any of these symptoms ?  btw im sorry for ur illness 
it must be very tough for u

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