Guest Book 3 and 4

Name:: Linda Bradford
Email:: lindaw@peganet.com
Location:: Ft. Myers FL USA 33912
Date:: Sunday June 03, 2001 01:33:53 GMT
Comments:: I found your site while researching Cardinoid Syndrome; my brothers has had it since 1989 and is having a lot of problems right now. He has been in the hospital since May 7. I want to learn more about what he is going through and what the future might bring. I saw carcinoid crisis mentioned in your "story" and would like to know what it is. Thank you very much for your site; it contains so much information.
Age:: 56-65

Name:: Greg
Email:: kg1m@amsat.org
Location:: Franklin County VT US
Date:: Wednesday May 30, 2001 17:59:52 GMT
Comments:: I have Carcinoid Syndrome.I started with flushing/wheezing/fatigue early 1990's.Diarrhea/1994. Misdiagnosed until 1995, when Bronchoscopy=Carcinoid lung tumor 1cm. L.Lung removed 95. Symptoms gone for 6-8 months then returned. Sandostatin 4/96. Now take three injections daily. I have had high/low BP varying for years. Not many blood/urine markers,ALL CARCINOIDS are different!(Substance-P WAS super elevated) Severe depression for years, WATCH OUT for seratonin battles between some anti-depressant meds and Sandostatin! Welbutrin works well for me. Read Dr. Bernie Siegal's books.KEEP POSITIVE ATTITUDE, worrying does not cure Carcinoid. Thank you "times three" for your site Susan.
Referred By:: NCSG site
Age:: 40-45

Name:: Susan E. Dianovsky
Email:: sdianovsky@staff.abanet.org
Location:: Chicago IL USA 60630
Date:: Wednesday May 30, 2001 16:36:12 GMT
Comments:: Thank you for your website and information. Since I had a duodenal carcinoid over 7 cm. 4 years ago (no syndrome), I feel very fortunate.
Referred By:: Nancy Hawkins (ME)
Age:: 40-45

Name:: Michael E. St.George
Email:: stgeorge@stgeorgelaw.com
Location:: Tempe AZ USA 85284
Date:: Tuesday May 29, 2001 17:04:58 GMT
Comments:: I want to come over on a Wendsday and listen - I play well enough to probably do some accompaniment - no licks to play myself, though. Maybe I could pick up a few.
I love bluegrass music and old gospel hyms.
Referred By:: newspaper
Age:: 50-55

Name:: Tamara Blagonic
Email:: tblagonic@sympatico.ca
Location:: Nobleton, Ontario CANADA L0G1N0
Date:: Sunday May 27, 2001 03:36:51 GMT
Comments:: Dear Susan, Thank you very much for your website. It is a wonderful
source of information.
My mother (age 58) was diagnosed with Carcinoid Cancer of the Ileum
with metastisis to the Liver in May 2000. We are quite puzzled & would
appreciate any new info/treatments on Carcinoid. There is not much
known in our area about this.....(Toronto,Ontario CANADA!!!)
Thanks again,

Tamara
Referred By:: Searching for Carcinoid Information
Age:: 30-39
Entry:: * * * PRIVATE ENTRY * * *

Name:: Heidi Lott
Email:: hhlott@hotmail.com
Web Site:: http://N/A
Location:: Mobile AL US 36609
Date:: Thursday May 24, 2001 21:55:38 GMT
Comments:: My doctor had me take the 5-H1AA test this week because of severe flushing and sweating. Even though I ask direct questions, she and the nurse keep hedging, so I started doing my own research on Web MD. Why the hell didn't they tell me the urinalysis wasn't for the diagnosis of flushing, but for the diagnosis of carcinoid cancer???? I've also been suffering from severe confusion, memory loss and impaired cognitive skills since Jan - and that's not like me!

I'm scared, I'm optimistic, I'm 30 and I'm fighting mad!

A Phoenix native trapped in the South,

Heidi
Referred By:: AOL.com
Age:: 30-39

Name:: Louise A. Barrett
Email:: ltbarret@aol.com
Location:: Yuma AZ USA 85367
Date:: Thursday May 24, 2001 15:55:59 GMT
Comments:: I have just been diagnosed with the Lung Carcinoid as of
5-16 still have not seen a Cancer Dr but have an appointment on 6-1. Read and enjoyed your page this morning. Thank you for all the research and info
Age:: 56-65

Name:: Stephanie Strowd
Email:: sstrowd@webtv.net
Location:: chapel hill NC USA 27516
Date:: Friday May 18, 2001 04:29:02 GMT
Comments:: I found your site to be very helpful, and comforting.
My father was diagnosed with carcinoid 3 months ago. He is going through chemotherapy and sandostatin treatments. My family is having a difficult time dealing with seeing him suffer. I try to be optimistic, but don't know what to expect. I am not sure where he is as far as "staging" goes, but I worry because of the severe pain he is in. He is not the man he used to be. The doctors haven't said much as far as prognosis goes, just that his liver looked like "swiss cheese" when he was hospitalized 3 months ago.
Thank you for such a good outlet for those of us looking for support!
Age:: 30-39

Name:: Dr. James Coleman
Email:: Dr.Coleman@CancerResearchAmerica.org
Web Site:: http://www.CancerResearchAmerica.org
Location:: Louisville KY USA 40222
Date:: Monday May 14, 2001 17:42:40 GMT
Comments:: According to the results of studies published in mainstream medical journals, including the Journal of the National Cancer Institute, there is a positive correlation between the carcinogens in certain cosmetics and breast cancer. Some cosmetic carcinogens were associated with aggressive and fatal breast cancer.

For more information on this subject, please visit our web site at: www.CancerResearchAmerica.org
Referred By:: Search Engine
Age:: 66-79

Name:: Stewart Hawkins
Email:: marco-king@webtv.net
Location:: Lawrenceville IL USA 62439
Date:: Saturday May 12, 2001 21:38:28 GMT
Comments:: What a wonderful day it is for me...having found your web site!! April 18 I went to local ER with ABD pain and within 4 hours was in surgery for bowel obstruction...that's when the carcinoid tumor was located and removed near the ileocecal valve. Discharged 7 days later with appt to local onc on 5/01....and guess what his course of action would be?? The "wait and see", "when another tumor forms" attitude you've described on your site!!! Well, thanks to many wonderful friends, I'm going to Mayo Clinic, Rochester on 5/17 for the "other" opinion! I've learned SO very much today in the last few hours of perusing your website....Thanks!
Age:: 46-49

Name:: Pam Kosmick
Email:: pamkosmick@aol.com
Location:: sterling heights MI usa 48313
Date:: Saturday May 12, 2001 01:49:02 GMT
Comments:: We just found out last week my mom was diagnosed with Carcinoid for the 3rd time (July of 1999, June of 2000, and now May of 2001). The first two times the surgeon was able to remove the tumors in the intestine and the colon. This past time we were told that the tumors were in the liver and they could not complete the surgery to remove them. I decided surf the net and get as much information as I could. I came across your story which I found very informational. Reading your guest book made me feel that our family is not alone and we still have hope!! Our family is very strong, and we will beat this disease!!!! Thank you.
Referred By:: surfing the net
Age:: 30-39

Name:: Teri Duffy
Email:: toteri@msn.com
Location:: Gilroy CA 95020
Date:: Thursday May 10, 2001 05:31:20 GMT
Comments:: Susan, I was given your site information by Dee.I have been diagnosed with Carcinoid Syndrome since 1984.Still going...
This site led me to ACOR and for both I am extremely grateful. Your site is very up to date,accurate and helpful.
Thank you for all your time, energy and help. Teri
Referred By:: Dee
Age:: 40-45

Name:: Marge Streb
Email:: mstreb@unityhealth.org
Location:: Rochester NY USA 14617
Date:: Tuesday May 08, 2001 18:07:03 GMT
Comments:: Susan, I was just diagnoised with carcinoid cancer in Feb. of this year. I am being proactive in my health care. I have an appt. with an oncologist today. I am hoping that she is knowing in the carcinoid field. I feel that I should be on some form of treatment and not hang around for the "wait and see" option. The cancer was found in my ovaries and has spread thru out my abdomen. I am very happy to see that you had the treatments and have faired well with them. I also, know that everyone is different. Thank you, for this web site and I will be visiting it often. Marge
Age:: 50-55

Name:: Dave Ellington
Email:: delling001@aol.com
Location:: Merced CA USA 95340
Date:: Friday May 04, 2001 18:35:21 GMT
Comments:: I don't have much time to write at this moment, but I found your website on a search of "carcinoid tumor." What a great site! I am searching for info to try to figure out what has been going on with my mother. I will write back more with some of "her" story later.. Thank you.
Age:: 40-45

Name:: Jennifer Doerksen
Email:: JEndwayneforman@hotmail.ca
Location:: Winnipeg Canada
Date:: Friday May 04, 2001 04:49:21 GMT
Comments:: I have a co-worker who was diagnosed with carcinoid syndrome in the past year. I found your information very helpful to understand some of what she is going through.
Age:: 18-29
Entry:: * * * PRIVATE ENTRY * * *

Name:: Barbara
Email:: buterflybarb@theriver.com
Location:: Benson AZ US 85602
Date:: Sunday April 29, 2001 20:54:26 GMT
Comments:: Your web page was very interesting. I was diagnosed with carcinoid cancer May 1, 1998. Due to extreme pain in my lower right abdomen my primary care doctors sent me to emergency. I had exploratory surgery by excellent surgeon who found the carcinoid tumor in my intestine. The surgeon checked further and found the tumors had metastised to my liver. The surgeon referred me to an aggressive oncologist. I had a chemo made up of three different medications, plus Interferon once a week. This was done for four days a week every three weeks. This seemed to stop the tumors from growing for a few months. In May of 1999 I had a chemo liver embolization, which made the two larger tumors shrink and so far am stablized. I take regular tests every three months and so far, so good. . Thank you for your story.
Referred By:: web page
Age:: 50-55

Name:: Gwen Lamm
Email:: Lammge@aol.com
Location:: Vancouver WA USA 98661
Date:: Thursday April 26, 2001 05:14:55 GMT
Comments:: I was diagnosed Dec of 1996. I have liver matastise and am on sandostatin Lr. I am doing okay,pretty much stable. I was having a lot of symptoms but had now idea what was wrong. I went to doctors and they said it was in my head. I was treated like that for six months then finally changed to a doctor that would listen to me. He sent me to OHSU and I was diagnosed of having some form of cancer with in two days. I will be attending the Seminar on the 28th of April and am looking forward to learning as much as I can. It is a hard illness to live with but I am doing pretty well emotionally. I've gotten a lot of good information from yur sight and enjoy checking it often to see what has been added. Keep up the good work.... Gwen
Age:: 50-55

Name:: John Weiss
Email:: jcweaw1@aol.com
Location:: Indianapolis IN usa 46217
Date:: Tuesday April 24, 2001 05:13:02 GMT
Comments:: 1.6cm carcinoid in lung--Removed one lobe on 021401. Question is, now what? Dr says stage one cancer.
Age:: 56-65

Name:: Jill Glee Drenning
Email:: jheckman@pennswoods.net
Location:: PA USA 15522
Date:: Sunday April 22, 2001 19:59:47 GMT
Comments:: I will be writing to you soon. I am at the end of my rope and the doctors don't know what to do. They basicly have given up.
Age:: 30-39
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Name:: marie johnson
Email:: mariba@tir.com
Location:: Grand Blanc MI USA 48439
Date:: Sunday April 22, 2001 18:46:02 GMT
Comments:: Enjoyed your story. Good luck to you. I am also a Carcinoid Cancer Servivor.
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: JOAN MILLER
Email:: JML9940@AOL.COM
Location:: SOUTH CHARLESTON OH USA 45368
Date:: Saturday April 21, 2001 05:16:00 GMT
Comments:: MY MOTHER HAS JUST NOW, APRIL 17,2001, BEEN DIAGNOSED WITH CARCINOID CANCER.SHE IS 86 YEARS OLD. I HAVE ALL OF THE SIGNS AND SYMPTOMS BUT I HAVEN'T GONE TO A DR. YET. TO BUSY WITH MOM. THANK YOU FOR SHARING YOUR STORY. MY PRAYERS ARE WITH YOU AND YOURS, JOAN
Age:: 56-65
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Name:: Kathleen S. Curtis
Email:: Kakie71@aol.com
Location:: Pensacola FL 32513
Date:: Friday April 20, 2001 20:58:23 GMT
Comments:: HELP, I am newly diagnosed with a carcinoid tumor of the (duodenum). It was the pea-sized, 0.2 cm. My Dr. believes that he "got it all" and wants to do another endoscopy in 6 months. I am wondering if there isn't something else that I should be doing. I still feel that there is something not quite right in my lower abdomen. I too had a ductal carcinoma in 1991 (I was 38). I have had chronic anemia for 2 yrs. now. I am taking 10,000 ml injections of epogen twice a month. My count is still low. I also have Systemic Scleraderma. My liver is also enlarged. I haven't found any blood in my stool, yet they did find the carcinoid by endoscopy. Do you have any ideas or suggestions? The idea of having cancer again has really thrown me into a tailspin, and I am not one to sit and wait to see what happens.
Age:: 46-49

Name:: L
Email:: klg151@mind.net
Location:: Ashland OR
Date:: Thursday April 19, 2001 00:44:42 GMT
Comments:: Amazing website! Am a new (ignorant) computer user, stumbling around to find info on sandostatin because of a cousin in Norway who's been on it since pancreatic/liver/peritoneal tumors were found 2 years ago. After browsing your web I have bookmarked it. I have a feeling my mother may need more of the info you provide.
Thanks for your work. There are many links I want to check out. Sounds as though we have much in common: cats, cowboy poetry, bluegrass&Celtic, literature, Arizona, Beeson (an early settler of Ashland area).
Again, thanks and God Bless.
L.
Referred By:: Sandostatin search
Age:: 50-55

Name:: Brenda Morgan
Email:: ButterflyBjm @aol.com
Location:: Newport News VA 23608
Date:: Saturday April 14, 2001 14:49:13 GMT
Comments:: Hi Susan lots of great information,you been in touch with my sister Diane for the last year and a half concering my carcinoid,finally got a computer,you have truly been a blessing to our family.Thank-you&God Bless you, Brenda
Referred By:: Diane Thorpe
Age:: 30-39

Name:: Gabi
Email:: gabi_in_fl@yahoo.com
Web Site:: http://gabi_in_fl.homestead.com/berthas.html
Location:: FL
Date:: Monday April 09, 2001 00:55:57 GMT
Comments:: Susan.....I have signed your book before...and I am a breast cancer survivor....but, have kept up reading your very informative site....I enjoy your emails on your updates....Keep up the great work...and please stop by to visit my site....

Gabi

Name:: Kathy Norris
Email:: knorris747@aol.com
Location:: Sacramento CA 95822
Date:: Thursday April 05, 2001 03:42:11 GMT
Comments:: I have carcinoid syndrome.
Referred By:: a friend
Age:: 50-55

Name:: Shirley Dewey
Email:: nsdewey@msn.com
Location:: Apache Junction AZ USA 85220
Date:: Wednesday April 04, 2001 17:01:56 GMT
Comments:: Great web sites enjoyed will visit often
Referred By:: Sharon Davis
Age:: 56-65

Name:: Kathy Norris
Email:: knorris@smud.org
Location:: Sacramento CA 95822
Date:: Tuesday April 03, 2001 16:30:17 GMT
Comments:: I was diagnosed with carcinoid syndrome 12/22/00. I was shocked. Until now my mind did not want to deal with it. I am out of my shell now and going full speed ahead on learning as much as I can about this. I seem to have every symtom that pertains to this cancer. I am still a very happy person.
Referred By:: me
Age:: 50-55

Name:: Dorothy R Myers
Email:: dorothyrm@yahoo.com
Location:: Jennings LA 70546
Date:: Tuesday April 03, 2001 13:18:08 GMT
Comments:: Just trying to get info on this dreaded disease. I haven,t done any research in a long time.
Age:: 56-65

Name:: Joe Gladysz
Email:: jgldysz@yahoo.com
Location:: Broadview Hts OH usa 44147
Date:: Monday April 02, 2001 16:21:35 GMT
Comments:: Dear Susan,

Thank you so much for your web page. It is the most informative and positive page I have fou.nd on Carcinoid

Best Regards

Joe Gladysz
Age:: 50-55

Name:: Joe Gladysz
Email:: jgldysz@yahoo.com
Location:: Broadview Hts OH usa 44147
Date:: Monday April 02, 2001 16:21:19 GMT
Comments:: Dear Susan,

Thank you so much for your web page. It is the most informative and positive page I have fou.nd on Carcinoid

Best Regards
Age:: 50-55

Name:: Joe Gladysz
Email:: jgldysz@yahoo.com
Location:: Broadview Hts OH usa 44147
Date:: Monday April 02, 2001 16:21:18 GMT
Comments:: Dear Susan,

Thank you so much for your web page. It is the most informative and positive page I have fou.nd on Carcinoid

Best Regards
Age:: 50-55

Name:: Doreen
Email:: eyewata@aol.com
Location:: Palm Coast FL USA 32164
Date:: Monday April 02, 2001 04:39:44 GMT
Comments:: The info was inspiring
Age:: 46-49

Name:: Peggy Walters
Email:: pegw@worldnet.att.net
Location:: Friendsville TN USA 37737
Date:: Monday April 02, 2001 02:34:56 GMT
Comments:: Hi Susan,
This is a great web site and an inspiration to me. I have seen Dr. Lowell Anthony in New Orleans for my carcinoid diagnosis. His recommendation of sandostatin has helped greatly but like you, I would certainly like to know where the primary site is. Thus far I don't know. I can relate to many things you've faced, especially tiredness. It makes me so mad to be so tired and in pain so constantly. It has been difficult for me to find information on carcinoid. I guess I'm just too tired or not as tenacious as you and I very much appreciate and admire your strength. My prayers for you continued improvement and my thanks for you web sight full of useful information.
Peggy
Referred By:: friend who bumbled upon the site
Age:: 50-55
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Name:: Rosemary Knittel
Email:: Knittel@acninc.net
Location:: Florissant MO USA 63031
Date:: Sunday April 01, 2001 11:18:48 GMT
Comments:: I'm having a small bowel resection on Monday, April 2, and have found your story most educational and interesting. Thank you for the time you have invested in sharing yourself.
Rosemary Knittel
Age:: 56-65

Name:: Christina Brown
Email:: cfb9325@rit.edu
Location:: Rochester NY United States 14612
Date:: Thursday March 29, 2001 03:08:47 GMT
Comments:: This is my first time visiting your site. I am touched by your story in ways I cannot explain. I am a student at the Rochester Institute of Technology. I am a Biotechnology major studying to work towards cancer research. I have to write a manuscript for one of my classes this quarter and I have been searching for a topic. My boyfriend's father passed away about a year and a half ago from Carcinoid Disease(cancer). I am greatly interested in finding out more about this disease so as to write my manuscript and to learn for the future. I want to thank you for putting this site together because it will help quite a bit with my research and with future interests. Good luck and god bless you! ~ Christy
Age:: 18-29

Name:: Christina Smith
Email:: txweatherwife@home.com
Web Site:: http://ourAngelLinda.homestead.com/memorial.html
Location:: Dallas TX
Date:: Wednesday March 28, 2001 21:27:07 GMT
Comments:: What a wonderful web site for people with carcinoid cancer!!
My mother recently died 3 years after being diagnosed with
carcinoid cancer. I believe that she had had this cancer for
many many years before they found it. She would have loved
this site! Keep up the good work!

Name:: Elizabeth Williams
Email:: 4sons@mail.com
Location:: Nicholson GA usa 30565
Date:: Wednesday March 28, 2001 16:50:25 GMT
Comments:: My husband has a form of carcinoid cancer and found the website
to be very helpful for us.
Age:: 50-55

Name:: Angela
Email:: A1mom96@aol.com
Location:: KS usa
Date:: Friday March 23, 2001 02:54:17 GMT
Comments:: Thank you for your site, My Mother has just been diagnoised with Carcinoid Cancer and I have been tring to understand it better and with your site I am able to read on it and hope to understand it better. Thank You again and God Bless You..
Age:: 18-29
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Name:: Pat McGuinness
Email:: Pamcg1@aol.com
Location:: Neptune City NJ USA o7753
Date:: Thursday March 22, 2001 22:42:23 GMT
Comments:: my daughter was just diagnosedwith carcinoid and is being treated by Dr. Warner. I am scared for her but remain faithful that she will be healed. She has two very young children.
Age:: 56-65

Email:: STEWDIX@AOL.COM
Location:: ST LOUIS MO USA 63088
Date:: Thursday March 22, 2001 10:37:10 GMT
Comments:: MY SISTER HAS CARCINOID. FOUND IT LAST NOVEMBER WHILE DOING EXPLORATORY SURGERY. I FOUND YOUR WEB SITE VERY INFORMATIVE AND WOULD APPRECIATE HEARING FROM YOU. I WANT TO KNOW ALL I CAN ABOUT WHAT SHE IS GOING THROUGH SO THAT I CAN HELP HER. SHE IS ON SANDOSTATIN BUT NOTHING SEEMS TO HELP THE DIAREHEA. SHE IS TAKING THE MONTHLY INJECTIONS PLUS LOMITOL AND IMMODIUM. WOULD LOVE TO HEAR FROM YOU.
Age:: 50-55
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Name:: Jennifer Golden
Email:: e-mark@texas.net
Location:: Austin TX USA 78727
Date:: Thursday March 22, 2001 03:22:40 GMT
Comments:: What an inspiration you are to us all. I am 26 and had a carcinoid tumor removed incidentally a month ago. I now am trying to learn all I can about the tests I need to find out if I have other tumors. After 4 years of pains in my side that doctors couldn't explain, it was nice to know that it wasn't all in my head. Thank you for the information you have provided here and please let me know if there are any tests you recommend I request from my oncologist. With two weeks to go until my wedding - this has been a crazy time for me and my fiance!
Referred By:: Search Engine!
Age:: 18-29

Name:: William Dunlop
Email:: billandmarie@telus.net
Web Site:: http://n/a
Location:: New Westminster, B.C. Canada v3m-6j4
Date:: Thursday March 22, 2001 01:22:59 GMT
Comments:: Sue, I was really happy to find your web-site and to learn that you and others know about this carcinoid diease. You sure have done a lot of work on this project,very well done. I have just been diagnosed with this rare cancer through intestinal surgery and do not know exactly what stage I am at and what can be done to help my situation.
Up here in Canada there is less awareness about carcinoid so I will be going to The Portland conference to see what I can Learn, thanks for that info by the way.
Perhaps I will meet you down there so we can exchange info etc.
Anyway this was meant as a short note so I will let you go, please let me know if I connect with this message and thanks again Sue.

Yours Truly Bill Dunlop
Referred By:: CANCER SURVIVAL GUIDE
Age:: 56-65

Name:: eliane manuel
Email:: r.manuel@curinfo.an
Location:: curacao netherlands antilles
Date:: Tuesday March 20, 2001 02:30:59 GMT
Comments:: iam confronting now an operation to prevent the carcinoid to spreadup in my body. Iread your story and can not understand how you stayed so many years in pain.but thank God you could survive it. the 27of march i have an operation.thank god that my appendix got bad that inow can say that iam save please let me now if you get this massage
Age:: 18-29

Name:: Evelyn
Email:: eve36_71468@yahoo.com
Location:: LA
Date:: Sunday March 04, 2001 23:40:02 GMT
Comments:: My husband has esophageal cancer, could not have the p.e.g. tube because the tumor was too large and fibrous; we didn't opt for surgery for implanting the feeding tube, are now in an excellent hospice program, but are weighing pros and cons of having the stent. Want to share your opinions? Thanks! Evelyn
Age:: 56-65

Name:: Marcy Myers
Email:: sawctart1@aol.com
Location:: Key Largo FL usa 33037
Date:: Saturday March 03, 2001 05:07:28 GMT
Comments:: I have visited your site quite often. Almost daily to see how you are. My father has been diagnosed as of Dec. 27, 2000. We are in Miami and hopefully off to the Moffit Center in Tampa. Dad is on the Sandostatin up to 2cc per day and seems to be getting the "symptoms" under control. We meet with the Oncology on March 8th. Hopefully to get going on some kind of treatment. Dad is hoping for surgery. The treatments are so vast these days that we can kind of make a choice. Dad is 71 and the doctors really are not paying attention as much as I would like them to. Your site is wonderful and keep feeding us the info. We all need the help and you keep your spirits up too! You are always in my prayers. You are the inspiration for this rare disease.
Referred By:: surfing the net
Age:: 40-45

Name:: Diana Martinez
Email:: dmmartinez56@hotmail.com
Location:: Kyle TX U.S. 78640
Date:: Friday March 02, 2001 21:46:12 GMT
Comments:: I have a sister who was diagnosed 4 1/2 years ago with carcinoid tumors in her liver and was told 2 wks ago she has about 3 wks to 3 mos to live do you have any advice for me as to how I can help her...we do not want her to "give up"....anything you can tell me would be helpful I have told her about you and have printed her this site to give her some good reading and maybe it will help her...thanks.
Age:: 40-45

Name:: Kathy Monaghan
Email:: Putz@mediaone.net
Location:: Exeter NH Usa 03833
Date:: Friday March 02, 2001 04:10:10 GMT
Comments:: Thank you for all the information...I am searching for all, and everything,,regarding Carcinoid since my diagnosis, surgery, treatments,,,and the problems I have encountered..Thank you for giving me hope, and courage to be determined, to not fall through the cracks.
Age:: 50-55

Name:: sharon
Email:: sghensley30@hotmail.com
Location:: noble OK USA 73068
Date:: Wednesday February 28, 2001 08:15:52 GMT
Comments:: I found your website in a magazine. I've almost given up finding information on carcinoid, until I found yours. Thanks alot! I was diagnosed with carcinoid syndrome in Nov of 1995, but had symptoms for at least 10 years. I had sought medical help over the years, but to no avail. One Dr. told me to walk up and down our road vigorously, and that would fix whatever ails me. Finally a Dr. went through my navel, and discovered 5 tumors in my abdomen. Both ovarie
had tumors the size of golf balls, and the small intestine they think was the primary site. 17" of intestine was removed. It had spread extensively. It now has spread to my bones. Anyway I live day to day, and work hard to have a positive attitude. Its easier for my family if I can keep my spirits up. Thanks again for all this valuable information. My age when diagnosed was 51.
Age:: 56-65

Name:: Shelly
Email:: Brodfam@aol.com
Location:: Miami FL USA 33176
Date:: Friday February 23, 2001 22:57:07 GMT
Comments:: Wonderful webpage. My father was diagnosed with carcinoid this summer - June 2000. He had one surgery to remove the portion of the small bowel and the appendix and all else was clear. Then he had a bowel obstruciton due to scar tissue and had to have another surgery. He is at MD Anderson in Houston which is an excellent facility, but they do take the wait-and-see approach. I've spoken to him about going to see Dr. Warner in New York, but he is quite satisfied with the care he is getting. He does not have the carcinoid syndrome at this point. What do you think?
Age:: 40-45
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Name:: Wendy Edwards
Email:: wendy80@netzero.net
Location:: Chester CT USA 06412
Date:: Friday February 23, 2001 03:09:56 GMT
Comments:: My Aunt was just diagnosed, and it was comforting to see so much information and encouragement at your site.
Referred By:: Lycos search engine
Age:: 40-45

Name:: george zook
Email:: gzook@mvcc.edu
Location:: utica NY usa 13501
Date:: Wednesday February 21, 2001 19:16:18 GMT
Comments:: hello My mother has been diagnosed with carcinoid cancer that has formed tumors in her liver ... primary not found ... the doctors seem to want to give up on her because of her age ... 77 ... I will not let that happen.
have you or any one ever heard of irregular heart beats or other heart problems associated with carcinoid cancer ???

thanks george
Age:: 50-55

Name:: Melanie Williams
Email:: CWill88048@aol.com
Location:: Dana Point CA USA 92629
Date:: Monday February 19, 2001 16:23:37 GMT
Comments:: I was diagnosed in 1998. surgery for tumor insmall intestine
Jan 99 chemoembolizationto liver and March 99. second chemoembolization.i am on Sando 40mg twice a week and have to haVE RESCUE SHT OCCASIONALLY.please keep in touch.Melanie
Referred By:: found you on internet
Age:: 56-65

Name:: Sharol Jessen
Email:: sjessen@nvc.net
Location:: Redfield SD USA 57469
Date:: Saturday February 17, 2001 20:25:16 GMT
Comments:: You are an inspiration to me. I felt so alone not having anyone to relate to with my same type of cancer. I too, was a long time coming in being diagnosed. One of my tumors was removed Sept/2000; 2 tumors are unremovable in the mesentary. Every 30-days I receive a Sandostatin shot from my cancer specialist. Will have follow up check-ups in Mayo Clinic in Rochester, Minn.

God bless you for this wonderful service you have given us in telling your story on the web. and encouraging us by relating to one another.
Referred By:: son
Age:: 56-65

Name:: Rochelle Greaves
Email:: shellig61@worldnet.att.net
Location:: Las Vegas NV USA 89102
Date:: Friday February 16, 2001 20:57:23 GMT
Comments:: Thank you so much for all of your research, it has been like an oasis in the desert! My brother was just recently diagnosed with Carcinoid cancer, and I have been searching for information.
Age:: 30-39
Entry:: * * * PRIVATE ENTRY * * *

Name:: Holli Daniel
Email:: hadagain@hotmail.com
Location:: Cold Spring MN usa 56320
Date:: Friday February 16, 2001 00:15:09 GMT
Comments:: I have been very upset as I have been thru so much testing. I have the flushing, nausea, tachycardia, chest pain, dizzyness, tongue soreness, but they figure it is in my head. I am not making this up. Heartburn too. I don't know where to turn or what to ask for. They said they thought I might have a carcinoid but then after some tests dropped it. How long can I live with it getting worse or should I? I truely enjoyed your pages and thank you for all you do. God Bless you and my prayers are with you and your family. Holli
Referred By:: self
Age:: 40-45

Name:: Linda Lebow
Email:: frlebow@aol.com
Location:: Amarillo TX 79110
Date:: Thursday February 15, 2001 21:10:19 GMT
Comments:: i just got started looking thru all your info & research & want to let you know how excited i am about finding somewhere to start. thank you. my mom has been in the hospital for 7 weeks now from an operation on small intestine to remove carcinoid blockage. the 1st surgery did not hold, she became very ill with THE infection & they had to re-do the surgery. She has aspirated twice since the 2nd operation & is being weened off the ventilator now. After all this we have to deal with the cancer which has spread to her lymph nodes so i want all the info i can find. our prayers are with you & would appreciate yours. thank you
linda lebow
Referred By:: looking for anything on carcinoid cancer & found you
Age:: 50-55

Name:: Loyd J. Yarbrough
Email:: PAPALJY@AOL.COM
Location:: Byhalia MS USA 38611
Date:: Tuesday February 13, 2001 04:18:10 GMT
Comments:: Just finished reading your story. Very enlightning. I need to know how long one must be off Sandostatin LAR Depot before Octroscan can be done with results that can be trusted. Thanks for your help. Loyd
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Renee Peterson
Email:: sparker@intergate.ca
Location:: Vancouver Canada
Date:: Friday February 09, 2001 00:26:56 GMT
Comments:: When reading people's comments in the guest book about the article on carcinoid tumors, I wanted to find and read the article as well. Can you please tell me where to look? Thanks for your help.
Entry:: * * * PRIVATE ENTRY * * *

Name:: Mary L.Goldsmith
Email:: Maryg1807@aol.com
Location:: Tucson AZ US 85713
Date:: Thursday February 08, 2001 07:52:47 GMT
Comments:: Susan - What a spectacular job!! How do you get all this energy? I am about your age,now do not work,but find my energy very limited.You are truly amazing. What a fabulous page. It will take me forever to check it all out! Thanks
Referred By:: carcinoid cancer.org
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Betty S. Jones
Email:: bobett@strato.net
Date:: Thursday February 08, 2001 01:50:59 GMT
Comments:: Just been told I have Carcinoid. Beginning to get help at the Moffitt Cancer center at the University Of Southern Florida in Tampa , Florida. Thankful for your page . Your history is very simialar to mine.
Age:: 66-79
Entry:: * * * PRIVATE ENTRY * * *

Name:: Debbie Sousa
Email:: LadiBugg1979@aol.com
Location:: Stevinson CA USA 95374
Date:: Wednesday February 07, 2001 21:00:03 GMT
Comments:: My 23 year old sister was just diagnosed with a 2x5 cm carcinoid cancer located on her small intestine. She has seen an oncologist in San Francisco who believes that it can't be removed because, "statistically" she will build scar tissue surrounding various blood vessels. She will be seeing a surgeon next Wednesday to discuss her options. Where do you suggest we start in all of this? Is there a Specialist that we can get in touch with? Your suggestions would be appreciated.
Age:: 18-29

Name:: Margaret Rose Hartwell
Email:: margaretrose@home.com
Location:: El Sobrante CA US 94803
Date:: Wednesday February 07, 2001 19:55:01 GMT
Comments:: Skimmed thru your story & found it very interesting. Will email you soon. Margaret Rose Hartwell
Referred By:: internet
Age:: 46-49

Name:: Pim van Asperen
Email:: pvanasperen@freeler.nl
Location:: Hardinxveld The Netherlands 3371PG
Date:: Monday February 05, 2001 21:52:35 GMT
Comments:: Before november 2000 I never heard about carcinoid cancer. Your site is very helpfull in getting more knowledge of this rare type of cancer. Thanks for your help.
Age:: 50-55

Name:: Cindy Johnson
Email:: cindy@careertrac.com
Location:: milwaukee WI USA 53151
Date:: Wednesday January 31, 2001 12:36:47 GMT
Comments:: I need help-fast! My husband's former wife was diagnosed with carcinoid cancer roughly the 2nd week in Dec.,2000. It was discovered in the lungs and a "mass" around the heart. A later discovery revealed that it had spread to the brain. She has been undergoing daily radiation treatments to the brain area. On Monday, Jan 29th, the doctor told my husband that she has 3-6 months to live. Something doesn't seem right. Any suggestions, please???
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: L.Gill
Email:: gilllynne@hotmail.com
Location:: Toronto OH Canada M1K 2H5
Date:: Saturday January 27, 2001 20:49:45 GMT
Comments:: You were my first source of knowledge about carcinoid. I was diagnosed in 1994 and knew very little until I found you web page. Thank you for all your research and for making it available to me.
Age:: 40-45

Name:: Rich Frisbie
Email:: jjr@coslink.net
Location:: Thompsonville MI USA 49683
Date:: Monday January 22, 2001 02:35:41 GMT
Comments:: I also have carcinoid cancer that started out as a bowel
resection and has since spread to my liver. After reading
some of your information the only thing different is the
name, I'll be in contact, thanks much. Rich
Age:: 46-49

Name:: Marlene Palkovich
Email:: mpalkov@pressenter.com
Location:: St. Paul MN USA 55117
Date:: Saturday January 20, 2001 20:20:22 GMT
Comments:: Your story is so very much like mine that it is hardly coincidental. When I have more time (I too am a type A) I would like to chat with you. My very best wishes
Referred By:: Rosemary Finley
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Stan Shoemake
Email:: sshoemak@bellsouth.net
Location:: Franklin TN USA 37067
Date:: Saturday January 20, 2001 07:38:51 GMT
Comments:: Thanks for a very valuable source of information. I had surgery for the removal of a carcinoid tumor in the small intestine on Dec.14. Ever since I got home I have been looking for good ole plain down to earth information and you have provided it.
Referred By:: carcinoid.org
Age:: 50-55

Name:: Jim Kuhles
Email:: jimkuhles@att.net
Location:: Landing NJ USA 07850
Date:: Thursday January 18, 2001 16:39:26 GMT
Comments:: On Xmas 2000, I had emergency surgery to resect a perforated/infected Meckel's Diverticulum. During surgery, they also removed the appendix. Pathology on the Meckel's indicated a .4mm non-cancerous Carcinoid. Primary phyisician ordered a 5-HIAA test, which I am about to take. He is going to repeat this test 3 more times within a year and then annually for the rest of my life. I was wondering if there is anything else that you recommend I be doing from a proactive standpoint? Comments from my surgeon and some reading I've been doing indicate that there could be additional carcinoids. Also, the surgeon has never heard of any cases of carcinoids being present in the Meckel's diverticulum. He said he would be interested in hearing of any info I dig up. Any suggestions? I will pray for you continued recovery.
Age:: 40-45

Name:: Christine Henry
Email:: keithmukwa@aol.com
Location:: Prince George canada v2m5n3
Date:: Wednesday January 17, 2001 02:52:31 GMT
Comments:: Hi there, just searching for info on carcinoid cancer which my mom has had for many year.
Age:: 30-39

Name:: Julie Solomon
Email:: knuckleheads1@juno.com
Location:: Canyon TX USA
Date:: Tuesday January 16, 2001 02:37:28 GMT
Comments:: I was only 29 when I was diagnosed with Carcinoid Cancer. I had just had a baby and things were so confusing. We were so excited about our baby yet so frightened by the news about my cancer. I am just now able to think clearly nearly a year later. Your web site has been extremely helpful. Thank you for going to so much trouble to make information accessible
Age:: 30-39

Name:: Suzanne Watson
Email:: suzannew@mindspring.com
Location:: Atlanta GA USA 30044
Date:: Wednesday January 10, 2001 00:11:24 GMT
Comments:: Wow, what a great site. I am awaiting results for blood work. I am 30 years old and MD feels that I may have carcinoid syndrome. I have severe flushing several times a day, and some diarrhea, although that is not severe or constant. My 5-HIAA urine test was normal. Ubdominal ultrasound, barium enema and lung CT scan have also been normal. It is a very frightening thing to be confronted with. I am so impressed and inspired by the positive attitude of those diagnosed. Thanks for the wealth of information on your site.
Referred By:: surfing
Age:: 30-39

Name:: Sarah
Email:: saf0725@aol.com
Location:: AL
Date:: Tuesday January 09, 2001 05:09:56 GMT
Comments:: Had left lung (and all the (trimmings) removed in 1995.
Referred By:: Personal Search
Age:: 56-65

Name:: Arnie Hayden
Email:: hayarn@epix.net
Location:: Wellsboro PA 16901
Date:: Monday January 08, 2001 04:08:03 GMT
Comments:: Since being diagnosed with a carcinoid in January, 1995. I have taught myself and many doctors about carcinoids. I certain have appreciated many of your thoughts and directions to go. I have finally located a doctor who handles many carcarnoid patients. I have undergone some of the same treatments as you without as much success. But I have been to the Mayo Clinic and with Dr. Harold Harvey at the Hershey Medical Center in Pennsylvania I now have a good tie between them. It looks like Interfeon will become part of my life in the next couple of weeks. It is good to see you have made some good decisions and progress. Keep of the good work. Arnie Hayden
Referred By:: I have been at your site for several years
Age:: 66-79

Name:: Johanna Ansari
Email:: annansari@msn.com
Location:: Palm Desert CA USA 92211
Date:: Sunday January 07, 2001 04:09:27 GMT
Comments:: I can't believe your energy level. However, I agree with you to enjoy life to the fullest. I had choriocarcinoma in 1969 and also had kidney cancer in 1993. Lost my right kidney, but nothing else was done. I feel fine. Good luck.
Age:: 66-79

Name:: frank johns
Email:: sechobug@aol.com
Location:: mooresville NC usa 28115
Date:: Saturday January 06, 2001 16:31:09 GMT
Comments:: helpful and reassuring to read about others
Age:: 40-45

Name:: Boyke Iskandar
Email:: boyke@ptkoba.co.id
Web Site:: http://yahoo.com
Location:: Indonesia 33181
Date:: Friday January 05, 2001 03:36:43 GMT
Comments:: I had a tumor in my right lung. the doctor told me it was carcinoid. The doctor then cut this tumor and it's took 8 hours to make it done. I also had six cycles chemotheraphy with carboplatin. Now I do radiotheraphy treatment. I need some information or some story about your experience to fight this cancer. It's been one year I fight this cancer and I do still expect that I'am going to win this fight.
Age:: 30-39

Name:: Melody Welnoski
Email:: Meldy Su@aol.com
Location:: Courtdale PA U.S. 18704
Date:: Thursday December 28, 2000 22:23:37 GMT
Comments:: I was diagnosed with a carcinoid tumor in 1992. I have found this web site a great source. Thank you.
Age:: 40-45

Name:: Phyllis Elliott
Email:: gene33@home.com
Web Site:: http://no web site
Location:: Oceanside CA USA 92054
Date:: Wednesday December 20, 2000 07:39:51 GMT
Comments:: After 4 months, and two surgeries I have found an Oncologist who understands Carcinoid and am now on Adriamycin and monthly LAR. Enjoy and appreciate all the info you provide, as it has helped us find information on the internet that we could not have known where to look to find. Thank you and your cherry outlook.
Referred By:: no one, found your website while surfing
Age:: 66-79
Entry:: * * * PRIVATE ENTRY * * *

Name:: Stephanie Sleight
Email:: steview@ovis.net
Location:: alma WV USA 26320
Date:: Sunday December 10, 2000 05:21:06 GMT
Comments:: I was so happy to find your site. I feel better to know I am not alone. My first carcinoid tumor was found during an emergency appendectomy (4cm) on April 13, 1999. Had a right hemicolectomy in June of 1999, also removed 21 regional lymphnodes, 7 postive with carcinoid tumors. follow up every 3 mos. So far all test ok except for question lesion on liver, said to be a cyst. I would like to hear from you. Thank you for your time and great efforts. Love Stephanie
Referred By:: oncolink
Age:: 30-39

Name:: Elinor Gonci
Email:: egonci@mindspring.com
Location:: Glastonbury CT USA 06033
Date:: Friday December 08, 2000 03:39:42 GMT
Comments:: Your site provides a great deal of useful information for us "noids".
Age:: 66-79
Entry:: * * * PRIVATE ENTRY * * *

Name:: Marilyn Jennison
Email:: mjenni9919@aol.com
Location:: Covington LA USA 70435-4632
Date:: Thursday December 07, 2000 17:43:11 GMT
Comments:: My Endocrinologist suggested that I may have a Carcinoid tumor. I am so pleased to find your web site. Thank you for all of your helpful support.
Referred By:: my sister, winnie=omerritt@aol.com
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Janet Smith
Email:: Buffalomomma@aol.com
Location:: Duvall AL USA 98019
Date:: Sunday December 03, 2000 02:18:29 GMT
Comments:: My father was recently diagnosed with a carcinoid tumor. Your site has been very helpful and informative! A lot of this I have already discovered (I, also am very proactive and assertive). However, we are just about to embark on his treatment program which will include octreotide (Sandostatin) so I was especially interested to know that this was successful for you. My father's tumor is "inoperable" though I don't know how they determine that jsut yet. I am hoperful his treatment will have a similar outcome anyway. Thank you for taking your time to inform the rest of us. God bless you!
Referred By:: Go.com
Age:: 30-39

Name:: Paula Tipton-Healy
Email:: pth123@email.com
Web Site:: http://www.homeopathyandbirth.com
Location:: Encinitas CA USA 92024
Date:: Wednesday November 29, 2000 18:13:55 GMT
Comments:: Dear Susan,
Thank you so much for your wonderful website. I have just recently been diagnosed with Carcinoid Cancer of the stomach from an endoscopy. I go in tomorrow for a CT Scan of the Ab/Pelvis & small bowel x-ray next week.
I was thinking of calling Dr. Warner in N.Y. but thought I should wait until I have more info from the results of these tests. The Dr. I have now assures me that this is not a very big deal & not to worry.......mostly just need to "keep an eye on it". I, however, like you am not one to just sit back & wait.
I know that you are incredibly busy so you don't need to respond I just really wanted to Thank you.
Take care,
Paula Tipton-Healy
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: lin rayford
Email:: crrtennis@ao;.com
Web Site:: http://none
Location:: washington DC usa 20012
Date:: Friday November 24, 2000 15:24:48 GMT
Comments:: Inspirational!

Longest survivor with liver mets?
Referred By:: accident
Age:: 66-79
Entry:: * * * PRIVATE ENTRY * * *

Name:: Eileen
Email:: ehannigan@aol.com
Location:: Stoneham MA
Date:: Thursday November 23, 2000 04:58:18 GMT
Comments:: Today my mother received a diagnosis of probable carcinoid syndrome. Her symptoms are flushing and diarrhea (both troublesome but not to the point that they severely restrict her activities). She also has abdominal cramps after eating and an elevated 5-HIAA (15). MD called today and said Octreoscan showed uptake in the small bowel and liver. Her gastrin level is also elevated, which I have not seen listed as a symptom anywhere. Based on preliminary conversation with MD, it sounds like he wants to take a conservative "wait and see" approach. I am concerned and grateful for any information. Thank you for this site.
Age:: 30-39

Name:: Paula Kraemer
Email:: azscrapcon@aol.com
Location:: Chandler AZ 85224
Date:: Wednesday November 22, 2000 00:39:23 GMT
Comments:: I am just beginning this journey, and I am really frightened. Thanks for the help.

Paula
Referred By:: Gary Auxier
Age:: 46-49

Name:: L.St.Pierre
Email:: llstpierre@aol.com
Date:: Monday November 20, 2000 03:16:45 GMT
Comments:: My uncle has just been diagnosed, and you're website has been so helpful- You are an amazing and inspiring person! Thank you for all the time you have put into this!

Name:: Dina Bolshazy
Email:: westie1@exis.net
Location:: Chesapeake VA
Date:: Sunday November 19, 2000 14:09:38 GMT
Comments:: Great site. I have MEN1 and have just been diagnosed with Gastric and Pancreatic Carcinoid. Thanks for all the great information. It is nice to see that there are so many caring people out there. Keep smiling.
Referred By:: surfing the net
Age:: 46-49

Name:: Silvia & Rene Rodriguez
Email:: renerodrg@aol.com
Location:: Lexington KY USA 40515
Date:: Friday November 17, 2000 16:42:20 GMT
Comments:: Susan:

We sent our comments through an ordinary e-mail. Thanks for the information.
Age:: 50-55

Name:: n.ferguson
Email:: nig.amb@lineone.net
Location:: UK
Date:: Thursday November 16, 2000 21:58:51 GMT
Comments:: thankyou this site has been very useful because my father has just been diagnosed with cancer. the doctors have just said it is carcinoid, but they don't know where it is yet. However, it is not as bad as it could have been, since it is a slower one and treatments are possible. once again thankyou for the site with lots of useful links.
Age:: 30-39

Name:: Pam Powell
Email:: prpowell@totcon.com
Location:: Orange city FL 32763
Date:: Monday November 13, 2000 20:25:54 GMT
Comments:: I have been diagnost with carcinoid (colon & liver). I am waiting to go to H.Lee Moffitt in Tampa, Fl. for surgery & treatment. I have been "surfing" to find the information needed to understand & prepare for the up-coming adventure. I have been experiencing carcinoid syndrome for 2 years not knowing what it was & just recently had a colonoscopy which with many other test indicated carcinoid.
Age:: 50-55

Name:: Janet Warren
Email:: gabi_in_fl@yahoo.com
Web Site:: http://www.gabi_in_fl.homestead.com/gabi_in_fl.html
Location:: Indian Harbour Beach FL 32937
Date:: Sunday November 12, 2000 23:58:48 GMT
Comments:: Susan...I found your site after viewing my friends site, Twiggy and Duckman...and spent an hour on your wonderful, informative web pages..I am a IDC breast cancer survivor. After reading your guestbook...I was very impressed with all the people you have helped by giving your time and self to assist them in all their questions. You are #1 on my Favorites......Thank you Susan.....
Referred By:: Bev Shyrock's website

Name:: Francine Aranda
Email:: franny_2@hotmail.com
Location:: Trinidad CO usa 81082
Date:: Thursday November 09, 2000 21:58:01 GMT
Comments:: My mom has carcinoid cancer in the small intestine, she was diagnosed last year August 13, 1999 (Friday the 13th) she was 39 years old. She is one of the youngest ones in our tri-state area Southern Colorado, Northern New Mexico, and Kansas. She did have to have surgery last May a week after I graduated high school. It was hard but I had to grow up real quick, I have a younger sister and she is 13. I learned a lot from your web site!
Age:: 18-29

Name:: Mary
Email:: prentice@ausnetwork.com.au
Location:: Brisbane Australia 4560
Date:: Friday October 27, 2000 00:48:41 GMT
Comments:: Thank you for your helpful site. Wish I had found it years earlier. Had carcinoid removed from left bronchus in 1992, after being misdiagnosed for eight years. Surgery was only treatment with a wait and see what happens attitude. I did have regular broncoscopies for 3 years and site of tumour was all clear. After reading your mail I'm now concerned as I have always continued to have flushes and bowel problems. I now feel I should be having these checked. Could you please advise me as I haven't found a doctor here who knows about carcinoids. Should I have urine and blood tests done and if so what are they called. I wish you well and once again thank you for this site as it seems most of us have all been neglected regarding our correct diagnosis. It cost me my left lung. Many thanks, Mary.
Referred By:: browsing net
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Morris J.Bialick
Email:: bialmor@aol.com
Location:: Mission Viejo CA u.s.a. 92692
Date:: Wednesday October 18, 2000 19:28:18 GMT
Comments:: I was diagnosed in March 1987. Have been on an infusion pump with 5fu plus 3million units Interferon A three times a week since October 27,1997.
Age:: 66-79

Name:: Eleanor L Fucci
Email:: evfv@aol.com
Location:: Greensboro NC United States 27410
Date:: Saturday October 14, 2000 00:24:30 GMT
Comments:: I have found your web site to be very helpful and informative. I found out that I have Carcinoid Cancer in June l999. So far I am doing very well. Your cheerful attitude is an inspiration to me.
Referred By:: Surfing
Age:: 66-79

Name:: Sunny Susan
Email:: S.L.Anderson@worldnet.att.net
Web Site:: http://home.att.net/~S.L.Anderson/
Location:: Tempe AZ 85823
Date:: Tuesday October 10, 2000 18:31:37 GMT
Comments:: This is a TEST message to see if the new guest book is
working o-k.
Referred By:: self
Age:: 56-65

Name:: Vivian Eaton
Email:: ViviEaton@cs.com
Location:: Somerset KY USA 42503
Date:: Tuesday October 10, 2000 03:58:02 GMT
Comments:: Susan, I just checked your site to see what was going on with you. I really enjoy your work and appreiate your support and help!! Thanks and God Bless, your friends, Michael and Vivian Eaton
Age:: 46-49

Name:: Lynne Iozia
Email:: liozia@actioninternet.net
Location:: Orlando FL USA 32811
Date:: Wednesday September 20, 2000 04:36:17 GMT
Comments:: None
Entry:: * * * PRIVATE ENTRY * * *

Name:: Marianne McKenzie
Email:: mariannemckenzie@hotmail.com
Location:: Sea Bright NJ USA 07760
Date:: Monday September 18, 2000 15:00:19 GMT
Comments:: Thank you for your site - the information and the upbeat attitude. A carcinoid tumor was discovered when my Mom had a "routine" colonoscopy in May. She had surgery for removal (5cm) but has as of yet no symptoms of the carcinoid syndrome. We are taking charge as she has 2 mets (although small) on the liver by meeting with Dr. Warner rather than accepting a "wait and see" recommendation.
Referred By:: Found site through the Carcinoid Cancer Foundation site
Age:: 46-49

Name:: Nicky Marquis
Email:: nickymarquis@hotmail.com
Location:: London England
Date:: Friday September 15, 2000 14:08:44 GMT
Comments:: Susan..what a brilliant website...how fantastic that you have spent so much time on this,which is so good for others to share.My great girlfriend Liddy Gwilliam,based here in Surrey England has carcinoid...we are trying to do all that we can to help her..this is the first time I have visited your site,but hope to be back many more times... Thankyou...
Age:: 40-45

Name:: Brian Amble
Email:: bramble65@aol.com
Location:: Grand Forks ND USA 58203
Date:: Wednesday September 13, 2000 01:59:15 GMT
Comments:: My girlfriend was just diagnosed with carcinoid cancer at the Mayo clinic in Rochester MN., I appreciate your site because all the symptoms that you have seem to match hers as well. She undergoes surgery next Thursday so this really helped me to understand it better and will help her greatly in understanding. Thanks, Brian
Age:: 30-39

Name:: Jim Powell
Email:: jbpowell@atore.unc.edu
Location:: Durham NC USA 27712
Date:: Monday September 11, 2000 15:59:25 GMT
Comments:: Found your site searching for information on Sandostatin. I was diagnosed in February 1999, began treatment in March 1999. After six months of treatment (5FU and Streptozicin(sp?)), tumors had reduced 25-30%, which is my best interpretation of the results. Have gone a year until now with CT scans every 3 months, each showing no change until the latest one showing very "subtle" change. As a result, I am starting Sandostatin injections at the end of the month. It is my understanding that there has been some success in reducing carcinoid tumors with this treatment.
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Morley Ann Rutherford
Email:: ruthjl@penn.com
Location:: PA US 15801
Date:: Saturday September 09, 2000 21:09:28 GMT
Comments:: Surgeon removed 30cm of Ilium containing 3 tumors ( 2cm and smaller) and 3 lymph nodes removed containing suspected metastisis. We are interested in any future diagnostic tests.
Age:: 66-79

Name:: Don Boone
Email:: don-hawaii@hawaii.rr.com
Location:: Mililani HI USA 96789
Date:: Friday September 08, 2000 15:36:29 GMT
Comments:: I have found your web page very useful and informative. Thank You for taking the time to research all that information and especially keeping it updated...I have also been diagnosed with a very rare Cancer called Multiple Endocrine Neoplasia Type IIA. I have had three surgeries to combat this disease and have to be tested every 3 months for any tumors or abmonorml growths throughout my whole body. Again Thank You for some great links and information.
Age:: 30-39

Name:: Laura Ditta
Email:: Fritz1Puma@AOL.com
Location:: Harvey LA USA 70058
Date:: Thursday September 07, 2000 21:56:20 GMT
Comments:: I felt so much better after reading your story. I just received my tests results from radiologist in the mail, as I requested, and I have 6 nodules on my liver but won't see the doctor (out of town) for 4 days. I just wanted to try to find out what "liver nodules" are and in looking around the internet I found your encouraging site. I, too, am a control type of person, especially concerning my body and health. I know it must have taken you a lot of time to compile all of your info to put on your web site. Believe me--your time has calmed me down and given me a sense of peace and control with a dose of positive attitude!! Thank you for sharing your life with me-you definitely helped at least ONE person today! Sincerely, Laura Ditta
Age:: 46-49

Name:: George & Irene Wall
Email:: gwall@compuserve.com
Location:: Guilford CT 06437
Date:: Thursday September 07, 2000 01:16:32 GMT
Comments:: Hi!
Age:: 50-55

Name:: Carol Jasmine
Email:: caraja@prodigy.net
Location:: Washington DC 20012
Date:: Wednesday September 06, 2000 14:29:55 GMT
Comments:: Thank you and God bless you for sharing
Age:: 56-65

Name:: Sally Harrison
Email:: sally.harrison@ntlworld.com
Location:: England
Date:: Wednesday September 06, 2000 14:10:28 GMT
Comments:: Thank you for the informative site. I have been diognosed with Carcinoid Syndrome 4 years, i have had half my liver embolised and am due another soon. I am very frightened, but i will fight.
Age:: 40-45

Name:: JOAN SIMONS
Email:: JOZZZZ@AOL.COM
Web Site:: http://CARCINOID CANCER
Location:: MILFORD NH USA 03055
Date:: Tuesday September 05, 2000 17:07:27 GMT
Comments:: I HAD CARCINOID CANCER IN 1973 THEY REMOVED MY WHOLE STOMACH AND SPLEEN.MADE ME A NEW STOMACH OF MY SMALL INTESTINE,IT WAS VERY HARD GOING FOR AWHILE,NOW 27 YEARS LATER I AM STILL GOING.BEFORE MY CANCER I WAS QUITE HEAVY,HAVEN'T BEEN SENSE.I WISH YOU ALL A GOOD HAPPY LIFE.
Referred By:: INTERNET
Age:: 56-65

Name:: Jennifer Hillier
Email:: thehilliers@home.com
Location:: Scottsdale AZ USA 85254
Date:: Thursday August 31, 2000 23:21:28 GMT
Comments:: Thank you for providing so much information on this. My mother has been diagnosed with carcinoid disease of her liver. She started on the Sandostatin last week, but it made her very ill. Her doctors even lowered the dosage to no avail. Have you heard of anyone having negative reactions to this medicine? I would also love to get your recommendations on some local oncologists. Thanks!
Referred By:: article in Az Republic and Carcinoid Foundation site
Age:: 30-39
Entry:: * * * PRIVATE ENTRY * * *

Name:: peggy chism
Email:: peggy@octm.com
Location:: idabel OK usa 74745
Date:: Thursday August 31, 2000 22:37:14 GMT
Comments:: diagnosed in 1993, still going strong
Referred By:: rhondaz_98@yahoo.com
Age:: 50-55

Name:: carolyn salerno
Email:: salernostreetrod@aol.com
Location:: sarasota FL usa 34233
Date:: Tuesday August 29, 2000 19:49:29 GMT
Comments:: thanks for sharing your story. very uplifting.
Age:: 40-45

Name:: john davis
Email:: johddavi@indiana.edu
Location:: bloomington IN usa 47401
Date:: Monday August 28, 2000 03:23:27 GMT
Comments:: Hello. I am a 29 yr. old law student, and am very scared. The symptoms and the doctor visits with unsatisfactory results sound too familiar. Are there people who DON'T die of this disease? Is there such a thing as full remission?
Referred By:: myself
Age:: 18-29
Entry:: * * * PRIVATE ENTRY * * *

Name:: ALISON MCMULLAN
Email:: ALI@BECKER.CO.UK
Location:: HULL ENGLAND
Date:: Thursday August 24, 2000 16:26:25 GMT
Comments:: WOULD LIKE TO SAY WELL DONE SUSAN ! KEEP UP THE GOOD WORK. WHEN MY MUM WAS DIAGNOSED WITH SECONDARY CARCINOID OF THE LIVER, I FOUND YOUR PAGE DURING MY RESEARCH. WE BOTH GAINED A LOT FROM IT. MY MUM WAS AMAZED AT YOUR STORY AND I'M SURE IT KEPT HER GOING. WE USED SOME OF YOUR SUGGESTIONS AND EVEN PRINTED A COPY FOR HER OWN CONSULTANT. EVENTUALLY MY MUMS CONSULTANT USED ONE OF THE SAME DRUGS AS YOU YOURSELF ARE USING AND IT MADE SUCH A HUGE DIFFERENCE. UNFORTUNATELY IT WAS TOO LATE AND SHE DIED ON DECEMBER 7TH 1998. I STILL LIKE TO READ YOUR PAGES FROM TIME TO TIME AND WOULD LIKE TO SAY HOW STRONG AND BRAVE YOU ARE (JUST LIKE MY MUM!) AND AS SHE HERSELF WOULD SAY - KEEP SMILING
Age:: 18-29
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Name:: MONIQUE DOYLE
Email:: GATEKEP@EATEL.NET
Location:: PRAIRIEVILLE LA 70769
Date:: Wednesday August 23, 2000 05:46:00 GMT
Comments:: I HAVE BEEN HAVING DIARRHEA AND STOMACH CRAMPS FOR YEARS. I
Age:: 30-39
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Name:: John J. McCoy
Email:: jmccoy1945@aol.com
Location:: Hammond IN USA 46324
Date:: Tuesday August 22, 2000 22:11:33 GMT
Comments:: This is a wonderful site. I don't know why it took me so long to view it. I have been on the lister since late 1997.
Referred By:: Long time support group reader
Age:: 50-55

Name:: Robert Walker
Email:: robertwalker@mindspring.com
Location:: Alpharetta GA USA 30005
Date:: Tuesday August 22, 2000 17:39:03 GMT
Comments:: Susan, this is a wonderful web site. Thanks for sharing your experience. I, too, have had carcinoid cancer and would like to ask your advice. I entered my questions but they were too long to be accepted in your guest book. Would you consider emailing me and allowing me to ask you some questions? Thanks. Robert Walker
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Joanna T. Lauber
Email:: JTL48@AOL.COM
Location:: Lake Ann MI USA 49650
Date:: Monday August 21, 2000 22:06:50 GMT
Comments:: Diagnosised on 8/18/00.
Age:: 50-55

Name:: Deb Grenier
Email:: LeeDe321@aol.com
Location:: N. Smithfield RI USA 02896
Date:: Monday August 21, 2000 02:17:24 GMT
Comments:: Hi Susan....
Age:: 40-45

Name:: Deb Grenier
Email:: LeeDe321@aol.com
Location:: N. Smithfield RI USA 02896
Date:: Monday August 21, 2000 02:11:12 GMT
Comments:: Hi Susan....
Age:: 40-45

Name:: Philipp Baumann
Email:: ualflyboy1@hotmail.com
Location:: Ridgefield USA 06877
Date:: Wednesday August 16, 2000 15:31:15 GMT
Comments:: Dear Susan,
Age:: 56-65

Name:: Karen
Email:: Caseyrnbsn@aol.com
Location:: Greensburg PA usa 15601
Date:: Tuesday August 15, 2000 23:44:52 GMT
Comments:: Packed full of great information and resource sites. God Bless you and your strength to persevre when no one would listen.
Age:: 30-39

Name:: louise davis
Email:: lookkee@aol.com
Location:: southfield MI usa 48076
Date:: Sunday August 06, 2000 19:34:31 GMT
Comments:: in june1999 i was diagnosed with small intestine cancer,andencarcinoma.i underwent 8 months of chemo,5fu and lecouvorin,currently i take my ctscans every 3 months.they show micro lympnodes(excuse my spelling)the doctors dont know if they r cancerous or not.they do not suggest any more chemo and everyday susan i live in fear.im sorry i must close now i amm very depressed,and am crying.thank u for all your info on your great web page louise
Age:: 40-45

Name:: Jo-Lynn Hefferman
Email:: wardrum@cheyenneweb.com
Location:: Cheyenne WY USA 82009
Date:: Friday August 04, 2000 03:20:06 GMT
Comments:: Fantastic, informative site. Many thanks.
Referred By:: Karen Kane
Age:: 50-55

Name:: Melanie S. White
Email:: Singwhite@aol.com
Location:: Harahan LA USA 70123
Date:: Thursday August 03, 2000 03:01:52 GMT
Comments:: My carcinoid tumors were found during a routine gall bladder surgery. Main tumor in the lower bowel and had metastisized with 3 in the liver. Had surgery at Mayo - Dr.
Age:: 46-49

Name:: Jill M. Hansen
Email:: cybu@aol.com
Location:: Ames IA USA 50010
Date:: Tuesday August 01, 2000 21:40:09 GMT
Comments:: My mom (age 59) passed away from carcinoid cancer on June 18, 1999, after several years of fighting this cancer (initial surgery, liver embolization & chemo treatments). We doctored at Mayo Clinic in Rochester, MN. I am still very active in finding out as much as I can on this cancer. I wish we would have found your site while she was still alive. If you have any questions regarding this cancer, please feel free to contact me via email. I was with my mother every step of the way so I have first-hand knowledge.
Referred By:: research
Age:: 30-39

Name:: Susan Dovi
Email:: aunttzsu@yahoo.com
Web Site:: http://none
Location:: Cortland NY USA 13045
Date:: Friday July 28, 2000 16:37:08 GMT
Comments:: My Dad just diagnosed and I am so glad to find your site.
Referred By:: response site

Name:: Naomi Reed
Email:: naomireed@hotmail.com
Location:: Billings MT USA 59105
Date:: Tuesday July 25, 2000 23:48:31 GMT
Comments:: My husband was diagnosed in 1995. We have had trouble finding out any information on carcinoids. It was so good to find someone else with similar experiences. We also went to NCI in Bethesda MD for a clinical trial, but didn't have anything specific for carcinoids. Then we found your web site and gave all the info to our Dr. He called Dr Warner, who suggested Sandostatin(which he was already taking) and interferon. He has taken the interferon for about 5 months, but stopped it because of too many side effects. Thankyou for all your valuable info!
Referred By:: son found while searching internet
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: Lisa Eddy
Email:: gweddy@hotmail.com
Location:: Centerville IA USA 52544
Date:: Thursday July 20, 2000 14:08:35 GMT
Comments:: I was very inspired by your website, and I only wish my sister were able to read it. My sister was diagnosed with Carcinoid cancer in 1993, when they removed a tumor the size of a fist. She has been plagued with severe diarreaha since that time, and has recently begun the hot flushing. She has been receiving her treatment at the Mayo clinic since the beginning, and is happy with her treatment, though she has been depressed lately, worrying that her time is close to the end. It's been 7 years, and the averages are not in her favor. But your website is a great tool to let people know not to ever give up hope! Thanks and God Bless!
Age:: 30-39

Name:: Myrtice Higginbotham
Email:: email-care@crawdat.com
Location:: Macon MS USA 39341
Date:: Monday July 17, 2000 12:50:13 GMT
Comments:: Excellent information on your site
Referred By:: Noni Wickman
Age:: 56-65

Name:: June Anderson
Email:: two-of-7@webtv.net
Location:: Upland CA 91786
Date:: Sunday July 16, 2000 22:58:58 GMT
Comments:: Thanks for all the information, very helpful.
Referred By:: Stephanie King
Age:: 56-65

Name:: Noni Wickman
Email:: ecan@imcnet.net
Web Site:: http://Carcinoid/vipoma Infosource
Location:: Potsdam NY USA 13676
Date:: Sunday July 16, 2000 19:49:01 GMT
Comments:: Thanks for the wealth of information on this not very understood cancer disease.
Referred By:: onsite
Age:: 46-49

Name:: Betty Cremin
Email:: Mibetc@aol.com
Web Site:: http://none yet
Location:: Orlando FL USA 32812
Date:: Sunday July 16, 2000 15:30:44 GMT
Comments:: I just got this computer. I am looking for imformation on the risks and/or advantages of a second liver embolization.My carcinoid cancer was discovered in 1993.I went to eight doctors in five years, before they did an exploritory operation and saw the tumor in my intestines.
Referred By:: your web site
Age:: 66-79
Entry:: * * * PRIVATE ENTRY * * *

Name:: Sheron Petesch
Email:: jspete@digisys.net
Location:: Kalispell MT USA 59901
Date:: Friday July 14, 2000 22:48:54 GMT
Comments:: Ihave been off my treatment with Interferon since July of 1999.I had been on injections three times a week with gradual increases in doses for a 21/2 year period.To this I am thankful. I must say
Age:: 56-65

Name:: Lewis Loftis
Email:: LLoftis@ATTGlobal.net
Location:: Huntsville AL U.S. 35741
Date:: Friday July 14, 2000 16:24:00 GMT
Comments:: Thanks for all the hard work on this site. I'm alraeady on your mailing list but I wanted to sign the Guest Book. Had initial colon surgery in Feb. 1995 to remove carcinoid tumor and one third of colon. Second surgery in June of 1999 to bypass blockage. Metastatic to liver and upper abdomen. On carbo and taxol chemo which has essentially stabilized tumors, and on 40 mg.Sandostatin monthly. Thanks for everything you have done for us.
Age:: 66-79

Name:: Becky Rouelle
Email:: beckyr@together.net
Location:: Milton VT usa 05468
Date:: Friday July 14, 2000 15:14:44 GMT
Comments:: Thank you for your hard work, Your information is very helpful.
Referred By:: self
Age:: 30-39

Name:: Nancy Hawkins
Email:: ndhawk@suscom-maine.net
Location:: West Bath ME 04530
Date:: Saturday July 08, 2000 02:48:53 GMT
Comments:: I think your web site is great! I was diagnosed in 1992 & could find very little info on carcinoid. I have since developed the syndrome (12/98) & do very well with my Sandostatin pump. I was also diagnosed with breast cancer in 10/96 & had surgery, chemo & radiation.
Referred By:: Met Susan at Sarasota conference May 2000
Age:: 50-55

Name:: Linda Stefanich
Email:: oasis1@ntsource.com
Location:: Aurora IL 60506
Date:: Thursday July 06, 2000 02:02:08 GMT
Comments:: I have found your web site, especially its links very informative. I have just recently been diagnosed and will return to your site often for more information. Thank you so much for caring and sharing.
Age:: 46-49

Name:: Vivian & Michael Eaton
Email:: ViviEaton@cs.com
Location:: Somerset KY USA 42503
Date:: Tuesday July 04, 2000 04:26:21 GMT
Comments:: Hello, Wanted to let you know we are still alive, I changed my email address by accident, leave it to me. We are doing very well. Mike has been sick some, we didn't get to the conference in Florida, We enjoyed your pictures and some that other people took. Thanks, I enjoy your sunny emails, Love, Vivian and Mike from Kentucky
Age:: 46-49

Name:: Nancy E. Wisman
Email:: newisman@cs.com
Location:: Thomasville PA USA 17364
Date:: Monday July 03, 2000 05:12:59 GMT
Comments:: I was extremely pleased to find a site that had so much info on carcinoid tumors. I had a thoracotomy in Dec of 1999 to remove a tumor in my lung. I was told that the tumor was a carcinoid tumor and that it was malignant and they were able to remove it. The good news was that it was not related to the colon cancer which I was diagnosed with in Feb of 1999. As a result of this, I was told my prognosis was good. I did not get much info, however, on the carcinoid tumor and have been looking for a source. Your web site is a great resource. Thank you.
Referred By:: found your site while surfing internet
Age:: 50-55

Name:: Michael Jackson
Email:: micjacsdca@aol.com
Location:: san diego CA united states 92120
Date:: Monday July 03, 2000 02:30:39 GMT
Comments:: I am sendin you this message on behalf of my frien in san
Referred By:: Alecia Chuck
Age:: 46-49

Name:: Michael Jackson
Email:: micjacsdca@aol.com
Location:: san diego CA united states 92120
Date:: Monday July 03, 2000 02:30:32 GMT
Comments:: I am sendin you this message on behalf of my frien in san
Referred By:: Alecia Chuck
Age:: 46-49

Name:: E. DOUGHERTY
Email:: EFDOUGHERTY@AOL.COM
Location:: LEAGUE CITY TX USA 77573
Date:: Sunday July 02, 2000 04:26:41 GMT
Comments:: My wife was just diagnosed with a rare form of slow growing cancer.The medical term is neuroendocrine wich I now believe is Carcinoid much of the symptoms are the same as described in your Web site. They determined this by a biopsy of the liver which apparently the tumor has spread to. We know very little about the cancer and the Doctor seem to be somewhat in the dark also.I will try to educate myself from your most worthy work. However if you have time to answer this post can you tell me how to stop the diarrhea. She has lost 30 lbs over 5 months and she only weighed 115 lbs at the start she is only 5 ft. tall. In addition can tou tell me if there is a physician in the Houston area that knows any thing about this cancer. I will forever remain grateful. Ed
Age:: 66-79

Name:: Mona Logullo
Email:: logullomona@hotmail.com
Location:: Calgary Alberta Canada T3A5Z6
Date:: Sunday July 02, 2000 03:39:18 GMT
Comments:: Your site is absolutely wonderful. I went for a mammogram in Sept 99 and 2 malignant tumours were the result - after biopsies, they decided that was not the primary site & a battery of tests resulted in the diagnosis of Carcinoid tumours in December. I had major surgury in January and am currently on Ocreotide and Interfeon A. I continue to experience daily attacks of diarreah even while on the medication. Your website is inspirational. Keep up the good work.
Referred By:: browsing the internet
Age:: 40-45

Name:: Patricia Snyder
Email:: PatS521@aol.com
Location:: Bronxville NY USA 10708
Date:: Wednesday June 28, 2000 01:00:39 GMT
Comments:: I visited my sister Carolyn, age 51, today at Sloan Kettering. She is a carcinoid patient. Unfortunately she is going into a hospice tomorrow. Decided to browse looking for a support group for families of carcinoid patients and found your website.I read the guess book entry of Marer57@aol.com. Sloan Kettering has a website that lists suburban locations. As she lives in NJ there might be one near her. Take care.-Patricia.
Referred By:: Browsing
Age:: 46-49
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Name:: Jim Kugelman
Email:: jimk@indy.net
Location:: Indianapolis IN USA 46241
Date:: Tuesday June 27, 2000 17:38:29 GMT
Comments:: I was diagnosed with colon carconoid tumors 1 1/2 months ago.
Age:: 46-49

Name:: Jan Richards
Email:: tjrich@pe.net
Location:: Sun City CA 92585
Date:: Monday June 26, 2000 17:22:13 GMT
Comments:: My Dad has a similar story regarding the carcinoid found in the appendix. I plan to tell him about your site and hope he will find it helpful. Right now he has had an upper GI scope, I guess it is, and they are biopsying some spots. He has not been as proactive as you, but hopefully has a good doctor. Thanks for your site and your courage.
Age:: 50-55

Name:: Peggy Anderson
Email:: Anderson@ctnet.net
Location:: Carlinville IL 62626
Date:: Saturday June 24, 2000 04:07:21 GMT
Comments:: Your story was enlightening. I was diagnosed with carcinoid of the stomach in Oct '95 & have had 3 more since then. Mine was caused from pernicious anemia. I take weekly B12 injections to minimize reoccurences & fight the chronic fatigue. Thanks for sharing. Sincerely, Peggy Anderson
Age:: 50-55

Name:: Peggy Anderson
Email:: Anderson@ctnet.net
Location:: Carlinville IL 62626
Date:: Saturday June 24, 2000 04:07:21 GMT
Comments:: Your story was enlightening. I was diagnosed with carcinoid of the stomach in Oct '95 & have had 3 more since then. Mine was caused from pernicious anemia. I take weekly B12 injections to minimize reoccurences & fight the chronic fatigue. Thanks for sharing. Sincerely, Peggy Anderson
Age:: 50-55

Name:: Pamela S. Best
Email:: bestp@marietta.edu
Web Site:: http://n/a
Location:: Vincent OH US 45784
Date:: Tuesday June 20, 2000 22:38:49 GMT
Comments:: Appreciate reading the chronology of your illness. Sometimes I feel like no one understands the fatigue because I've had surgery, and I'm supposed to be feeling better. This applies to doctors and loved ones alike. I'm just now being referred to an Oncologist, and I'm hoping for some good advice, but above all, a doctor/patient rapport that is so hard to find.
Referred By:: n/a
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Maryanne Ritter
Email:: marer57@aol.com
Location:: Succasunna NJ USA 07876
Date:: Tuesday June 20, 2000 13:13:32 GMT
Comments:: Dear Susan,
Age:: 40-45

Name:: Elaine Napolitano
Email:: enap54@aol.com
Location:: East Boston, MA America 02128
Date:: Monday June 19, 2000 02:16:05 GMT
Comments:: I had surgery in July of 99 for Carcinoid of the Appendix. The tumor broke through the appendix went into a section of my colon and one lymph node (12 were removed). I, like all of us Carcinoid patients am still trying to understand this illness.
Referred By:: Searching the Internet
Age:: 50-55

Name:: Pam Doyle
Email:: pdoyle@arcom.com.au
Location:: Australia 5043
Date:: Friday June 16, 2000 10:29:54 GMT
Comments:: Thankyou for all your enormous help.
Age:: 50-55

Name:: bettie paoeltta
Email:: grandmajaja@aol.com
Location:: San Antonio TX USA 78259
Date:: Wednesday June 14, 2000 22:30:06 GMT
Comments:: My 43 yr old son was just diagnosed with carcinoma. He lives several hundred miles away and not very happy in sharing with me the details. Is this hereditary? Both His father and I were adopted. Ido know there was cancer on my side fo family, I myself with Breast and Vulva.
Age:: 56-65

Name:: Andrea N. Turner
Email:: ATurner@Voyager.net
Location:: MI
Date:: Thursday June 08, 2000 02:06:28 GMT
Comments:: My 29 year old brother has adenocarcinoma of the jejunal. He has not began treatment yet, any information you have would be greatly appreciated! I made note of drs., tests, and treatments you've mentioned - thank you!
Age:: 30-39

Name:: Terri Rhodes
Email:: TerriRhodes@aol.com
Location:: Bel Air MD USA 21014
Date:: Tuesday June 06, 2000 00:54:41 GMT
Comments:: Susan - you are to be commended on your work - I am almost at a loss for words to describe how thrilled and inspired I am to read your page. I will visit and re-read many times. I write you tonight as I go tomorrow to get my results from my 5-HIAA test. I have been showing a lot of symptoms of Carcinoid Syndrome. I had a lower left lobectomy of my lung in 7/97 due to carcinoid. Needless to say - a little anxious. Thanks for all your information and I can't wait to catch up with you.
Referred By:: Researching on the Web
Age:: 30-39

Name:: Carole J. Wray
Email:: cwray@cfl.rr.com
Location:: Longwood FL US 32779
Date:: Thursday June 01, 2000 20:46:22 GMT
Comments:: I was just diagnosed with carcinoid cancer New Year's Eve of 1999 when 1/3 of my liver was removed with a tumor the size of a grapefruit. I also had part of the small intestine, appendix, lymph nodes removed as well. I still have eight inoperable tumors (quarter-sized)in my liver. I take the LAR shots and another pill (cholestid) to help with the diarhhea. I feel good, but I did retire early from my job as a middle school teacher. I will stay in touch!
Age:: 56-65

Name:: Kathi
Email:: barbed6@juno.com
Web Site:: http://none (This isn't my computer)
Location:: Lynn MA USA 01902
Date:: Tuesday May 30, 2000 22:42:54 GMT
Comments:: Hi, Had my first colonoscopy, and found out today that the small rectal polyp they removed seems to be a carcinoid. (I am already a cancer survivor..Hodgkins) I'm new to the web, and just wanted to thank you for your site. (I'll be back.) Also, my best wishes to you!
Referred By:: web search
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: Susan Hughes
Email:: quohadi@penn.com
Date:: Tuesday May 30, 2000 04:50:38 GMT
Comments:: Hi My mom had carcinoid. I wondered if it was a genetis cancer I have various gi complaints over last years with no dx. Any info you have i apperciate. Is a ct diagnostic for this? Dr not too aggressive to determine cause of my distress. I am concerned because my mom had thi Thanks for any suggestions
Entry:: * * * PRIVATE ENTRY * * *

Name:: nancy
Email:: jordi@execpc.com
Web Site:: http://execpc.com
Location:: milwaukee WI usa 53228
Date:: Thursday May 25, 2000 01:05:28 GMT
Comments:: Never had any symptoms, except the diarrhea and flushing of the face which I thoug was due to irritable bowel syndrome and adult acne. The carcinoid was found when I had a hysterectomy because of a pelvic mass. No one seems to be able to tell me much about this disease and because the cannot find the primary site i am either cured or it will return in several years. Since i am having problems again with the itching and rash I am happy to learn more about this disease.
Referred By:: surfing the web
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: Barbara Coffey
Email:: herbs@cwis.net
Web Site:: http://underconstruction
Location:: Whitefield OK USA 74472
Date:: Wednesday May 24, 2000 21:11:22 GMT
Comments:: Thank you for a wonderful link to what may prove to be an important sites for me.
Referred By:: self
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: lizette tressel
Email:: lizette_tressel@hotmail.com
Location:: Covina CA USA 91722
Date:: Wednesday May 24, 2000 06:13:25 GMT
Comments:: it was really nice to read your story, susan. truly inspiring. keep up the good work!
Referred By:: mariana o'dwyer
Age:: 18-29

Name:: Teun Elemans
Email:: tn@eyronet.nl
Location:: Amersfoort Netherlands 3817KJ
Date:: Monday May 22, 2000 19:20:51 GMT
Comments:: Since sept99 carcinoidsyndroom.first treatment J-IMBG.febr
Age:: 50-55

Name:: Judy Alden
Email:: Judy4ever@aol.com
Location:: San Diego CA USA 92117
Date:: Friday May 19, 2000 18:56:01 GMT
Comments:: Hi, Susan -- I've been staying current with your web page since my brother, Jack, was diagnosed with carcinoid cancer. You and your links have been a primary source of information for us and connected us to the Carcinoid Support Group. Thanks so much for all of your good work! Jack's sister, Judy in San Diego
Age:: 56-65

Name:: lauren gelina
Email:: lagcat@aol.com
Location:: middletown RI united states 02842
Date:: Wednesday May 17, 2000 19:20:22 GMT
Comments:: just a wonderful site and susan you are remarkable, thank you so much,
Age:: 40-45

Name:: Sheila Joyce Wilson
Email:: sjwilson51@hotmail.com
Web Site:: http://www.ukibi.com/personal
Location:: London united Kingdom N5 2NP
Date:: Wednesday May 17, 2000 16:15:20 GMT
Comments:: Dear Susan, I found it very supportive to read your page after I had come out of hospital
Referred By:: self
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Jim Cowper
Email:: cowper@freesurf.ch
Location:: Brunnadern Switzerland
Date:: Monday May 15, 2000 18:09:01 GMT
Comments:: Hi Susan. Your web site has given me a lot of comfort. During an endoscope on the 4th of April I was found to have a tumour later found to be carcinoid, in the duodenum. This was removed by surgery on the 26th of April. I show none of the carcinoid symptoms and nothing showed up on the CT Scans. I am now at home recovering from the op and your site has made me aware of the information which is available on this disease. It is an extremely rare type of tumour here in Switzerland and my surgeon had to contact his Professor for advice. The Professor had to loo it up in his text books. The next stage for me seems to be, regular check ups but as of today, no medicines are thought to be necessary. Thanks for info and my best wishes to you and all of us who can contribute to bringing this information to others who need it.
Referred