Guest Book 1 and 2

Name:: jennifer
Email:: jwdoc2b@aol.com
Location:: IL 60102
Date:: Sunday November 07, 1999 02:07:31 GMT
Comments:: hi last year i had a r upper lobectomy to remove a 1.5 cm x .3cm x .2cm carcinoid tumor. i have since had intermitent flushing and ct shows cysts in ovaries and two 5 mm nodules in lung- how often soies this cancer reccur, when should someone consider chemo? i am so lost and confused, can you suggest anything?
Age:: 18-29

Name:: Allan Whittingham
Email:: allan@whittingham214.freeserve.co.uk
Web Site:: http://n/a
Location:: Shropshire UK
Date:: Saturday November 06, 1999 19:35:21 GMT
Comments:: A great place for places to look for help THANKS!
Age:: 56-65

Name:: Kim Allen
Email:: KAllen9493@aol.com
Location:: Eaton Rapids MI USA 48827
Date:: Wednesday November 03, 1999 23:42:59 GMT
Comments:: Thanks for all the helpful info. I have been looking for the past two months and finally found your web page. Again thank you so much. KAllen
Age:: 40-45

Name:: Sherri Aldridge
Email:: zherbs4me@aol.com
Location:: Scottsdale AZ USA 85254
Date:: Wednesday November 03, 1999 14:23:39 GMT
Comments:: Susan,
Referred By:: friend e-mailed it to me
Age:: 56-65

Name:: Betsy Ernst-Mullin
Email:: Ernstmulln@aol.com
Web Site:: http://none
Location:: Madison WI US 53711
Date:: Tuesday November 02, 1999 23:27:21 GMT
Comments:: I had a tumor removed and hope it's gone but I'm nervous about where I actually stand.
Referred By:: found by husband
Age:: 40-45

Name:: Pat Furiga
Email:: areukind@hotmail.com
Location:: Mesa AZ USA 85201
Date:: Saturday October 30, 1999 16:49:05 GMT
Comments:: Hi Susan, I think of you daily. Hope your life is going well. Your website is amazing. So much information. I haven't received any email from you in months. Is there anything I can do for you? Pat
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Moira
Email:: pityakka@es.co.nz
Location:: Dunedin New Zealand
Date:: Saturday October 30, 1999 10:23:36 GMT
Comments:: Sadly my mother died of carcinoid syndrome in 1990 in England. It affected her liver but it took 10 years before she was diagnosed and it was my sister,a nurse who did some research and took her findings to the doctor. My mother had numerous tests in various hospitals in England and finally saw a visting Amercan specialist in London, sadly it was too late to do anything as her liver was seriously affected by this time. I worry sometimes that carcinoid syndrome is hereditary as I have some strange symptoms which have been put down to peri menopause. Your site has some wonderful information and I have bookmarked it. Take care and look after yourself. Kind regards, Moira
Referred By:: search
Age:: 50-55

Name:: THOMAS BENTON
Email:: BENTONIT@AOL.COM
Web Site:: http://NONE
Location:: MONROE GA USA 30655
Date:: Saturday October 30, 1999 01:08:07 GMT
Comments:: THANKS FOR INFORMATION, I ,TOO WAS MISDIANOIS,BY V.A. DOCTORS 1995.
Referred By:: JUST FOUND IT
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: Pat Talbott
Email:: ptalbeau@aol.com
Location:: Mandeville LA United States 70471
Date:: Thursday October 28, 1999 14:44:17 GMT
Comments:: Love what I've seen so far! Right now I'm going to go back and read more of your carcinoid story, as that is my interest.
Referred By:: Carcinoid.org site
Age:: 66-79
Entry:: * * * PRIVATE ENTRY * * *

Name:: Beverly Higson
Email:: BHigson@excite.com
Location:: Lowell MA USA 01854
Date:: Wednesday October 27, 1999 03:32:58 GMT
Comments:: I found out on October 13, that I have carcinoid tumors in my liver.Im a diabetic, have had a tripple by-pass, now this and Im scared.Thank you for your help.I will be back many times
Referred By:: search
Age:: 50-55

Name:: John Tiger
Email:: royalflush@sanctum.com
Location:: Holiday FL U.S.A. 34690
Date:: Saturday October 23, 1999 20:04:14 GMT
Comments:: Susan--
Referred By:: Susan Anderson
Age:: 66-79

Name:: Marlene J. San Miguel
Email:: mjsm22@aol.com
Location:: Miami FL USA 33143
Date:: Thursday October 21, 1999 22:44:48 GMT
Comments:: Thank you so much for the web page that you wrote. I hope that you are doing better now. I had a carcinoid tumor removed 2 1/2 years ago. Since I still have to go the see different doctors I like to read on it before I visit them. I go with a list of questions everytime I go. Take care and thank you for the information.
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: Michelle
Email:: mlittle@bond.co.uk
Location:: Brighton England BN13
Date:: Thursday October 21, 1999 16:22:24 GMT
Comments:: I am so glad to have found this Web Sight. It Is especially pleasing to hear the stories such as yours who have managed to overcome this terrible disease. I felt I needed to sign your book as I am looking for some information mainly for my grandmother who was diagnosed with the disease over a year ago and told she was living on borrowed time, but she's still here! At the moment she is awaiting some treatment but we all feel that we dont know enough about Neuroendocrine Carcenoid which is what she has.
Referred By:: Found you by looking especially for Carcinoid Syndromes
Age:: 18-29
Entry:: * * * PRIVATE ENTRY * * *

Name:: Renee Howard
Email:: RLHRENNIE@aol.com
Location:: Springfield MO 65807
Date:: Thursday October 21, 1999 02:57:57 GMT
Comments:: I have learned a lot from your web-site. I was diagnosed with carcinoid after an emergency appendectomy in late August, 1999. The carcinoid is in my liver with "too many spots to count" according to my doctor. One of the spots in three inches across. We have started the Sandostatin. Do you know if there is a specialist in this area?
Referred By:: Own Research
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: Sandy Cross
Email:: srcpantigo@aol.com
Location:: East Hampton NY USA 11937
Date:: Wednesday October 20, 1999 19:06:07 GMT
Comments:: Thank you for your Webb site. I am positive you have given advice, knowledge, references & hope to more people than you could ever imagine. I also thank Dee for responding to my letter asking for advice. ......Sandy
Referred By:: Dee @ Sale 4 Dee
Age:: 50-55

Name:: Arleen Doan
Email:: ldoanadoan@aol.com
Location:: Fountain Valley CA USA 92708
Date:: Wednesday October 20, 1999 15:47:26 GMT
Comments:: Thank you so much for doing this website. I have been going to doctors fo 7 months who all said I was "depressed" and that nothing was wrong with me. I have now been diagnosed with possible carcinoids in my liver from UCLA med center.
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Avis N. Brame
Email:: avis822@juno.com
Location:: CA usa 91767
Date:: Wednesday October 20, 1999 15:18:12 GMT
Comments:: I was diagnosed with rectal adenocarcinoma if Feb, 1999 and later diagnosed with a carcinoid tumor. After several tests prior, everything came up negative. I had lost approx. 40 lbs (165-127 lbs.). The tumor was found via a sigmoid. I would like to talk with you more in detail and share my story. My work email is "BRAMEA@MTA.NET", Mon-Fri, 7-4:30 p.m. I look forward to hearing from you in the near future. PS I was truly blessed by your "Carcinoid Story".
Age:: 30-39

Name:: Carol Thompson
Email:: aceem@hotmail.com
Location:: Searcy AR 72143
Date:: Tuesday October 19, 1999 16:40:13 GMT
Comments:: Susan, I'm a three year breast cancer survivor. I'm the one who told you that a port would make your life easier. I lost my best friend to adeno carcinoid after a 19 month fight. Her name was Suzanne Spurrier and she was the director of Harding University Library. Hers started in the appendix and was inoperable in the pancreas. My best wishes to you! I left the support group when she died.
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: sharon levin
Email:: SGL3535@aol.com
Date:: Monday October 18, 1999 20:59:22 GMT
Comments:: dear susan, iam thinking of you and hope your recovery goes well. love, sharon
Entry:: * * * PRIVATE ENTRY * * *

Name:: DIANA DOPP
Email:: doppdl@ukonline.co.uk
Location:: APO AE NJ UK 09469
Date:: Saturday October 16, 1999 20:29:12 GMT
Comments:: Thanks for the information. I have had unexplained right side pain for years and the doctors still cannot tell me what it is. I am not sure if I should bring this possibility up or not. I have not lost weight but gained and cannot lose. So maybe I am looking for an answer where there isn't one. But what got me was the red face, neck and shoulders. I get that a lot. Not everyday but often enough to be worrisome. I thought I was going through my change. Again I thank you for your information as I had never heard of this disease before.
Referred By:: cancersurvivors
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: C.J. Britz
Email:: CBBEE@AOL.COM
Location:: KS 66226
Date:: Saturday October 16, 1999 19:15:16 GMT
Comments:: A dear friend of mine was diagnoised with carcinoid cancer in May and they haven't given her a very good prognosis. She is fighting her way through, but the mystery of this disease is puzzling to her. She doesn't have a computer, thought I would look up things for her and mail to her.
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: Sheryl S. Platz
Email:: splatz21@hotmail.com
Location:: Chugiak AK USA 99567
Date:: Thursday October 14, 1999 15:41:57 GMT
Comments:: Hi Susan,
Referred By:: Home Page
Age:: 40-45

Name:: Kerry-Lynne Brown
Email:: defamiglia@juno.com
Location:: Portland OR U.S. 97213
Date:: Thursday October 14, 1999 00:27:45 GMT
Comments:: Thank you for this website.
Age:: 30-39

Name:: Dave Mader
Email:: mader3016@aol.com
Location:: Cedar Falls IA USA 50613
Date:: Wednesday October 13, 1999 23:55:02 GMT
Comments:: Susan, this has got to be one of the most interresting web
Age:: 46-49

Name:: Darcy D. Buland De Vallejos
Email:: dbvcooks@aol.com
Location:: Albuquerque NM US 87111
Date:: Wednesday October 13, 1999 02:04:45 GMT
Comments:: I was diagnosed in Aug.98 when 1\2 of my left lung was removed. The tumor was a-typical and now it appears to have spread to the lynph nodes at my cancer site. I am in constant pain and feel like giving up. You have a great source of information, wish my doctors had seen it years ago. Thank-you.
Referred By:: surf
Age:: 40-45

Name:: Julian Vereker
Email:: jvmbe@compuserve.com
Location:: Salisbury England
Date:: Tuesday October 12, 1999 18:52:10 GMT
Comments:: Diagnosed July '99, to start with the advice was do nothing. 3 months later a CT showed rapid advancement in my liver. Now the recomendation is 5FU continuous infusion.
Referred By:: Carsinoid Foundation
Age:: 50-55

Name:: Beth Blevins
Email:: beth.blevins@gte.net
Location:: zephyrhills FL 33540
Date:: Tuesday October 12, 1999 02:02:44 GMT
Comments:: Susan,
Age:: 56-65

Name:: Bill Sauder
Email:: bdsauder@msn.com
Location:: Phoenix AZ USA 85281
Date:: Sunday October 10, 1999 15:23:30 GMT
Comments:: My wife Eunice has experienced sever abdomen pain for a long time, irregular heart beat, rising blood pressure, lose of energy. Eunice has had lots of tests, catscan, upper and lower GI. I hope to get the doctor to test for Carcinoid Cancer. Thanks for your web site. Read your article in the Arizona Republic. Bill Sauder
Referred By:: Phoenix Republic, news paper
Age:: 66-79

Name:: Bill Sauder
Email:: bdsauder@msn.com
Location:: Phoenix AZ USA 85281
Date:: Sunday October 10, 1999 15:12:40 GMT
Comments:: My wife Eunice is experiencing sever abdomen pain, irregular heart beat, rising blood pressure, lose of energy. Eunice has had lots of tests catscan, upper and lower GI. I hope to get the doctor to test for Carcinoid Cancer.
Referred By:: Phoenix Republic, news paper
Age:: 66-79

Name:: Barbara White c/o Frances White
Email:: Arrows64@aol.com
Location:: Clinton MS USA 39056
Date:: Saturday October 09, 1999 05:09:44 GMT
Comments:: I was surfing and was delighted to find this site. My mother-in-law has recently had surgery for carcinoid tumors, and we have found little information. If you know of meetings, etc. in the South, let me know. I wish you well!
Referred By:: I found you on the web.
Age:: 66-79

Name:: Laura Clark
Email:: laura.clark@asu.edu
Web Site:: http://www.public.asu.edu/~iaclmc
Location:: Tempe AZ USA 85282
Date:: Thursday October 07, 1999 16:29:27 GMT
Comments:: Enjoyed your site -- Laura Clark (aka Pat Mau's daughter :))
Referred By:: Article in Republic
Age:: 30-39

Name:: Jane Alexander
Email:: PlnJane350@aol.com
Web Site:: http://none
Location:: Hueytown AL USA 35023
Date:: Thursday October 07, 1999 10:40:41 GMT
Comments:: Thanks, Susan, for your page. It is most helpful and I plan to read everything as time permits....
Referred By:: found on my own
Age:: 46-49

Name:: jim spillane
Email:: mickey_j@webtv.net
Location:: Phoenix AZ USA 85027
Date:: Tuesday October 05, 1999 23:12:46 GMT
Comments:: Hi Susan and Howard,
Referred By:: You
Age:: 46-49

Name:: MeBette L. Eckhardt
Email:: mebette@hotmail.com
Location:: Greenville NC usa 27858
Date:: Monday October 04, 1999 16:27:36 GMT
Comments:: I was dianosed with Accute lymphocytic Leukemia at the age of 4. I went through chemotherapy and my hair fell out. I feel because of my illness I didn't have a normal or typical childhood but my parent tried there best to make it seem so. I remember one thing in particular I used to do to make my parents laugh. When we would travel in the car I would wait for a car to be along side us and I remove my wig. The passengers in the other car would be awstruck. You have inspired me to add a page to my wed site explain my triumph over cancer. I have been in remission since I was 7, it has been 14 years!
Referred By:: your chain letter
Age:: 18-29
Entry:: * * * PRIVATE ENTRY * * *

Name:: Dee Wejzgrowicz
Email:: sale4dee@aol.com
Location:: Chesterfield MO USA 63017
Date:: Monday October 04, 1999 04:15:41 GMT
Comments:: Susan I have known you for years and met you at the Florida conference. I have visited this webpage many times and have emailed you to tell you how great it is but just wanted to put it in your guest book. I still say you are a remarkable woman. I do not know how you did all of this research while fighting carcinoid and breast cancer. You have such a positive attitude. This has helped so many people.
Referred By:: Susan
Age:: 56-65

Name:: Linda Landry
Email:: PLKD11@aol.com
Location:: Woonsocket RI USA 02895
Date:: Sunday October 03, 1999 03:31:47 GMT
Comments:: I have a carcinoid tumor in my left lung and will be having surgery in 2 weeks. I had my biopsy of the tumor and lymph nodes, but I haven't heard any results yet. I am having a sleeve ressection and my left lower lobe removed. Do you know anyone who has had similar surgery that I may talk to (Email)? If you do, please Email me. P.S. I grew up in Tucson.
Age:: 30-39

Name:: Irene Breiland Abdurajak
Email:: i.breiland@c2i.net
Location:: Bergen Norway
Date:: Saturday October 02, 1999 09:56:48 GMT
Comments:: My father has had "Carconid" canser since 1987,he is still alive, but he starts now to get sicker. I have been studie this cancer since he got it.
Age:: 30-39
Entry:: * * * PRIVATE ENTRY * * *

Name:: Peggy Taylor
Email:: jopet@dellnet.com
Location:: El Reno OK United States 73036
Date:: Friday October 01, 1999 19:26:37 GMT
Comments:: I was diagnosed in 1991 at the age of 35, have taken chemo
Age:: 40-45

Name:: Ron Cain
Email:: Mimianrym @cs.com
Location:: Portland TX 78374
Date:: Thursday September 30, 1999 03:41:30 GMT
Comments:: Carcinoid in the colon metastasized to the liver. LAR plus two shots a day.Feel much better since I retired from work.
Referred By:: Found on the net
Age:: 50-55

Name:: Glenda Suggett
Email:: CapReload@aol.com
Location:: Munroe Falls OH US 44262
Date:: Tuesday September 28, 1999 12:22:35 GMT
Comments:: Just wanted to sign the book. My wife, Glenda found out last week that she had the cancer in her small intestine. She went thru operation and will start treatment in 5 weeks.I'm siging this for her, Ron ( Husband)
Age:: 56-65

Name:: Robert Raappana
Email:: braappana@home.com
Location:: canada v9e1b4
Date:: Sunday September 26, 1999 19:05:12 GMT
Comments:: Susan, It's been a long time since I visited your homepage, what a great job you have done.
Referred By:: susan anderson
Age:: 40-45

Name:: Bernard Diekhoff
Email:: Bhoff7@aol.com
Location:: Westport IN USA 47283
Date:: Friday September 24, 1999 15:51:31 GMT
Comments:: Dear Susan,
Age:: 50-55

Name:: Linda Clark
Email:: cricket1@brazoria.net
Location:: Brazoria TX USA 77422
Date:: Thursday September 23, 1999 20:07:58 GMT
Comments:: I just had surgery Sept. 13th and was told that I had carcinoid tumor on my small bowel. Part of my small bowel was removed and I am doing well. Looking for information on this condition. Enjoyed your story.
Entry:: * * * PRIVATE ENTRY * * *

Name:: JACKIE FEAZEL
Email:: rcjfeazel@aol.com
Location:: Shreveport LA 71108
Date:: Wednesday September 22, 1999 23:55:19 GMT
Comments:: I found your webpage to be very informative and helpful. Thanks for all the research, I have learned more about my disease from you than from the doctors. I am under the care of Dr. Lowell Anthony (New Orleans) and he is very supportive and kind. Keep up the good work that you are doing.
Referred By:: Search Engine
Age:: 66-79

Name:: Marilyn Atwood
Email:: marilyn@fastwave.net
Location:: San Diego CA USA 92123
Date:: Wednesday September 22, 1999 23:51:03 GMT
Comments:: Hi Susan: I have a friend who asked me to look on the internet for Metastatic Carcinoid Syndrome. She wants to know more about the symptoms and treatment, but I can't find anything specific. Do you know where I can find it?
Referred By:: found on internet
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Jane Alexander
Email:: PlnJane350@aol.com
Location:: Hueytown AL USA 35023
Date:: Wednesday September 22, 1999 06:18:20 GMT
Comments:: Doc trying to rule in or out carcinoid..severe abdominal pain and bright red flushing (face, hands)---doc took a lot of blood today,consulted an endocrinologist....now with next spell I am to collect a 24-hour urine....Got any comments or suggestions? How can I find THE best specialist in the Birmingham, AL area? thanks....so many questions?!?!?!?!? Jane
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Charles H Barney
Email:: CbarneyRPH@aol.com
Web Site:: http://www.roswellpark.org
Location:: East Amherst NY USA 14051
Date:: Wednesday September 22, 1999 05:58:37 GMT
Comments:: Dear Ms. Anderson-
Referred By:: Link from The Carcinoid Cancer Foundation
Age:: 46-49

Name:: Patti Jo Boehm
Email:: PJBome@aol.com
Location:: Homewood IL
Date:: Wednesday September 22, 1999 04:40:08 GMT
Comments:: Thank you for all of the information
Age:: 30-39

Name:: scherell hurst
Email:: sjmh@aol.com
Web Site:: http://world wide web
Location:: cedarville AR 72932
Date:: Wednesday September 22, 1999 02:10:29 GMT
Comments:: i was just diagnosed with carcinoid tumor of duodenum and am now having the octereo can starting today and the next 2 days then will do the 5hiaa test. have already had ct and all showed normal. im trying to learn more about this. i am very luck because my doctor found this so quick and is starting these tests quickly. i really enjoyed reading your story. i'll keep you in my prayers. any suggestions would be appreciated. i've got alot to learn.
Referred By:: just diagnosed with carcinoid tumor and looking for info
Age:: 30-39

Name:: Pat
Email:: GranEPat@aol.com
Location:: Salem VA United States 24153
Date:: Wednesday September 22, 1999 00:07:52 GMT
Comments:: Thanks for all your hard work on "carcinoid". My husband DX. in June with small intestine surgery in July. Doing fine now. To have 3 mo.(5-HIAA) test and colonoscopy every 6 mo. Found on routine colonoscopy by gastroenterologist bright enough to check further into small bowel to biopsy inflammed area. Thank goodness. Also spread to lymph nodes near area. These removed as well. Took out about 20 inches of small bowel. Oncologist tells us "NOT TO WORRY". He said it so many time on last visit that I think maybe we should worry. We have most positive attitude but I sure would like to have as much information as I can find. Appreciate your hard work and hope that you are doing fine. May God continue to Bless You. Maybe we can talk again.
Referred By:: self
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Neil Brady
Email:: neilbrady@hotmail.com
Location:: Henderson NV USA 89014
Date:: Monday September 20, 1999 23:23:55 GMT
Comments:: My son age 26 has been diagnosed with Carcinoid Cancer and just had 8" of small intestine removed . There were two carcinoids, one large enough to cause a blockage. He was diagnosed 4 years ago after having severe abdominal pains, and it was found that he had many on his liver. The doctors have been un-able to locate the primary tumor.
Referred By:: Search Engine
Age:: 50-55

Name:: Angela Buttrum
Email:: abuttrum@aol.com
Location:: Nashville TN usa 37013
Date:: Sunday September 19, 1999 17:51:03 GMT
Comments:: Thanks to your web page I've learned more about carcinoid cancer than I have since being diagnosed is august 99.
Age:: 30-39

Name:: sheron petesch
Email:: jspete@digisys.com
Location:: Kalispell MT USA 59904
Date:: Sunday September 19, 1999 04:31:33 GMT
Comments:: Your story is very similar to mine.
Age:: 56-65

Name:: Renee Howard
Email:: RLHRENNIE@aol.com
Location:: Springfield MO 65807
Date:: Sunday September 19, 1999 03:23:56 GMT
Comments:: I was recently diagnosed with carcinoid found during an emergency appendectomy. It has metastisized to the liver, approximately 10-12 spots could be seen during surgery. I am now awaiting results of the CT Scan and the 24-hour urine testing. I have been trying to read to get as much info as possible. This is all very new to me. I am not even aware of how knowledgable my oncologist is in Carcinoid. I have a lot of research to do, but am currently awaiting original test results.
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: DORINDA VINSON
Email:: dorindavinson@hotmail.com
Location:: PEARISBURG VA USA 24134
Date:: Sunday September 19, 1999 02:36:05 GMT
Comments:: MY GRANDMOTHER WAS DIAGNOSED WITH THIS TYPE OF CANCER 12 YRS AGO-NOW EVERY FAMILY MEMBER SEEMS LIKE SHE STILL WILL
Referred By:: myself
Age:: 30-39

Name:: Beth O'Reilley
Email:: Boreilley@aol.com
Location:: Devon PA usa 19333
Date:: Saturday September 18, 1999 15:41:59 GMT
Comments:: I too have been having RLQ pain. I have had my appendix removed (completely abscessed and necrotic). After having the appendix removed I started with fevers, fatigue and increased pain. CT showed cysts-felt to be ovarian, ultrasound was normal. Finally they decided to do an arteriogram. The arteriogram showed a 2x4 cm lesion along the superior mesenteric artery-dx suggestions were lymphoma or carcinoid tumor. None of the docs seem to know where to go from here because the CT was relatively normal. I found your story interesting because I am feeling a lot of the same frustration you did while trying to find a diagnosis and get treatment. I am having trouble even getting the docs to give more pain medication stronger than naprosyn. Keep up the good work with the web site.
Age:: 30-39
Entry:: * * * PRIVATE ENTRY * * *

Name:: Sandra Parrish
Email:: UFPARRISH1@AOL.COM
Location:: Winter Garden FL USA 34787
Date:: Saturday September 18, 1999 05:12:00 GMT
Comments:: Thank you for your informative contrabution to those of us fighting this dreaded desease. God bless you in your personal battle.
Age:: 50-55

Name:: V. Renato Burkhardt
Email:: galaxy1@pipeline.com
Location:: Boca Raton FL USA 33433
Date:: Wednesday September 15, 1999 17:07:30 GMT
Comments:: A few days ago a Doctor told me that I had 2400 CEA's in my
Age:: 56-65

Name:: Sherrie Jarrett
Email:: slj16dlj1@juno.com
Location:: Sacramento CA U.S. 95825
Date:: Tuesday September 14, 1999 05:40:28 GMT
Comments:: Hi Susan! Just discovered your home page tonight. What a blessing!!! I have been DESPERATELY trying to find SOMEONE, ANYONE who also has had sweats with carcinoid. They can't find any tumor and yet I have been diagnosised with carcinoid syndrome and have been on Sandostatin for about 2 years. Have you known or heard of ANYONE who has all the symptoms of carcinoid syndrome but they couldn't find the tumor???
Referred By:: Self
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: Gillian Price
Email:: gmp@aber.ac.uk
Date:: Monday September 13, 1999 10:47:09 GMT
Comments:: Best wishes to you from Aberystwyth, Wales, UK. I am about to start a Ph.D. in information management/multimedia looking into the situation of paediatric cancer patients in here in Wales - and joined some cancer mailing lists in the USA to see how you do things as we are _way_ behind. I have read your story and some parts made me angry for you (in the nicest possible way). I wholly believe that we must maintain a positive and balanced attitude to every challenge in life - and believe you have cracked it!! :)
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: Jo Beth Crawford
Email:: JCraw6414@aol.com
Location:: Tempe AZ USA 85283
Date:: Sunday September 12, 1999 00:24:52 GMT
Comments:: I was diagnosed with breast cancer in January, 1998 and underwent a lumptectomy, chemotherapy and radiation. This week I was told that I had a carcinoid tumor and am just beginning to learn about it. I hope that I can keep the same positive attitude that you have, but there are days when it's pretty scary. I'll learn more about my condition over the next few days, as I have several tests to schedule. I have not shared this latest diagnosis with my mother. We just lost my dad and I didn't want to worry her until I have more knowledge. However, my children know and have been great support. Thanks for your story.
Referred By:: Myself
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Tracey Alberts
Email:: Talb588474@aol.com
Location:: Schenectady NY usa 12308
Date:: Saturday September 11, 1999 16:07:23 GMT
Comments:: My mother has carcinoid, and reading your story is very uplifting, thank-you.
Age:: 30-39

Name:: Doreen Jaskela
Email:: djaskela@home.com
Location:: Kelowna, BC Canada
Date:: Saturday September 11, 1999 05:37:20 GMT
Comments:: Very interested in your history - I am on the breast cancer list as I have stage 1V breast to bone cancer. Thanks for all the information. Regards Doreen

Name:: Jeanette McJunkin
Email:: Katznana@aol.com
Location:: Lucedale MS United States 39452
Date:: Thursday September 09, 1999 14:18:18 GMT
Comments:: I found your story very informative. You should be proud of the research you have done, I am so new at this. I don't even know about the tests, terminology, etc. yet. I am sure it won't be long until I am familiar with all of it. Thank you for taking the time and the effort to put all this together. I am so hungry for information about this cancer, I want to learn all I can. Thank you.
Age:: 40-45

Name:: Nancy Peacock
Email:: NPEACO1120@AOL.COM
Location:: Davenport IA USA 52803
Date:: Wednesday September 08, 1999 01:57:16 GMT
Comments:: Susan, thank you for all the work you have done and continue to do. I so hope to get to a seminar so I can meet you. For readers..I had my first carcinoid in 1983 and am still working 40 hours per week...just recently on LAR20 and really doing pretty good except for tiredness. Have mets to the liver with a lot of involvement, but no other treatments planned at this time. THERE IS HOPE!!! I have had this disease now for 16 years that we know of so please keep faith that you will keep making yourself going and don't dwell on the negative. That's what I try to do. I also find great comfort in beautiful music. Good health to all. Thank you Susan!!!
Referred By:: Just Visiting..it's been a long time!
Age:: 50-55

Name:: Roger Samuels
Email:: SoleDaddi0@AOL.COM
Web Site:: http://S.L>Anderson@worldnet
Location:: Hagerstown MD USA 21742
Date:: Monday September 06, 1999 15:53:34 GMT
Comments:: Wonderful informative site you have here. It definitely is a help in cancer awareness for all who visit. I am just learning of this dreadful disease. God bless you for passing this knowledge to others.
Age:: 46-49

Name:: Joyce A. Dugan
Email:: jdugan@mb.sympatico.ca
Location:: Roblin Canada ROL 1PO
Date:: Monday September 06, 1999 15:52:42 GMT
Comments:: I was diagnosed with Neuroendocrine Carcinoid Cancer May 12,99
Age:: 40-45

Name:: ELIZABETH A COLLINS
Email:: elucine@aol.com
Location:: Miami FL USA 33176
Date:: Sunday September 05, 1999 17:04:10 GMT
Comments:: Found you from exploring the internet to become informed about carcinoid(12mm) tumor removed from lungs August 5,1999.My gastrointestinal problems though less devere than yours parallel your recitation. Thanks
Referred By:: self
Age:: 66-79

Name:: Jeff Smith
Email:: shaliscar@mpx.com.au
Location:: Belmont North Australia 2280
Date:: Saturday September 04, 1999 03:37:24 GMT
Comments:: This is just and advice that I have had a change of e-mail address. Please delete the old one (jeff.smith@hunterlink.net.au). I hope you are feeling better. Looking forward to Sandostation LAR being available in Australia soon.
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Molly
Email:: Snerk218@aol.com
Location:: CT USA 06492
Date:: Wednesday September 01, 1999 01:25:56 GMT
Comments:: If anybody has any information on the liver kind of carcinoid syndrome please e-mail me. My grandmother may it and I would like to find out all of the information I can. Thank you very much!
Age:: Under 18

Name:: Nik Doshi
Email:: nikunj_d@hotmail.com
Location:: Kirkland WA USA 98034
Date:: Friday August 27, 1999 18:02:08 GMT
Comments:: Dear Susan,
Referred By:: Internet Search Engine
Age:: 18-29

Name:: Thom BELL
Email:: thom_bell@bc.sympatico.ca
Location:: Kamloops CANADA
Date:: Monday August 23, 1999 17:37:31 GMT
Comments:: I'm looking for some vitimins to take during radiation of my carcinoid tumor in my lung.Any body have sugestions.
Age:: 40-45

Name:: Thom BELL
Email:: thom_bell@bc.sympatico.ca
Location:: Kamloops CANADA
Date:: Monday August 23, 1999 17:26:25 GMT
Comments:: Thank you for the page .Just advised myself so am looking for info.
Age:: 40-45

Name:: laurie Gindler
Email:: bgindler@cvtv.net
Web Site:: http://none
Location:: Hallettsville TX USA 77964
Date:: Sunday August 22, 1999 23:23:26 GMT
Comments:: Your story was very informative. We found Dr. Warner two weeks after my diagnosis with Carcinoid Cancer...a lucky hit. He referred me to Dr. Larry Kvols of UNM Health Science Center in Albuquerque, recently joined the Moffitt Cancer Research and Treatment Group in Tampa, Fla. Surgery for removal of part of lower intestine, colon, and liver was done at St. Joseph Hospital by Dr Peter deIpolyi in May of 1998. Post treatment two daily Sandostatin Injections until May 1999 when I started LAR. Will see Dr. Kvols in Tampa in November. Concur with your opinion of Dr. Warner and the Carcinoid Foundation. Laurie G.
Referred By:: Carcinoid Cancer Online Support group
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Carol A. Snyder
Email:: csnyder@oasistech.net
Web Site:: http://None
Location:: Winter Haven FL U.S.A. 33881
Date:: Saturday August 21, 1999 16:00:04 GMT
Comments:: I am trying to find out some information on the treatment of Neuro-endocrine cancer for my cousin Ruby Burkett who has been dealing with it for 6 years. She is about at the end of her rope emotionally and I just thought that maybe I could find something to encourage her or maybe even something new about treatment for it. She is currently being treated for it at the Moffit Cancer Center in Tampa, Florida under the care of Lodovicco Balducci, her oncologist. I read your story and it's very different than her's but I wish she could have your outlook! Thank you for writing it all down, it was very inspiring to me.
Referred By:: Found you by internet request on neuro-endocrine cancer.
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: PAM COLE
Email:: PCEC@ZOOMNET.NET
Location:: PORTSMOUTH OH USA 45662
Date:: Wednesday August 18, 1999 22:07:47 GMT
Comments:: I had two carcinoid tumors removed from my small bowel in
Age:: 46-49

Name:: maria pellegrino
Email:: mvpell3@aol.com
Location:: raritan NJ usa 08869
Date:: Wednesday August 18, 1999 02:28:03 GMT
Comments:: my mom 55 diagnosed w/carcinoid tumor in small intestine & nearby lymph nodes . should we go to saltz (sloan) or warner (mount sinai) is it true warner doesnt accept insurance
Age:: 30-39

Name:: Pat Goldstein
Email:: patronhp@aol.com
Web Site:: http://aol
Location:: Highland Park NJ USA 08904
Date:: Saturday August 14, 1999 04:51:04 GMT
Comments:: What a marvelous website you have! After reading your story
Referred By:: my own research

Name:: Barbara J. Day
Email:: bjday@mindspring.com
Location:: Flowery Branch GA Hall 30542
Date:: Thursday August 12, 1999 18:14:14 GMT
Comments:: Have just found your website and am thrilled at what all I
Age:: 50-55

Name:: Cathy Divilly
Email:: cdivilly@beckman.com
Location:: Galway Ireland
Date:: Wednesday August 11, 1999 12:59:16 GMT
Comments:: Thank you for your support. You are an amazing, wonderful woman and you have helped me so much through your home page.
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Malinda
Email:: halogirl@netscape.net
Location:: Overland Park KS usa 66223
Date:: Wednesday August 11, 1999 06:12:30 GMT
Comments:: What a remarkable woman you are. I found your page by researching carcinoid my dr. told me today I have a carcinoid tumor in my stomach but it is not cancer. But I have to have surgery to remove it. God Bless to you and prayers coming your way.
Age:: 18-29

Name:: Shirley McDermott
Email:: tierraman@worldnet.att.net
Location:: Naples FL 34108
Date:: Tuesday August 10, 1999 14:24:55 GMT
Comments:: Susan, I read "your story" after I sent you the E-mail message. Thanks for all the info in "your Story" which is very similar to mine. Your experince with interferon was very helpful. I was sorry to hear about the breast cancer but glad to see you are taking it in stride, I guess we become hardened by the carcinoid trial we have been through. Keep up the fight our thoughts and prayers are with you.>
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Sande Riggan
Email:: riggs7@intop.net
Web Site:: http://susans home page
Location:: smithville MS 38870
Date:: Saturday August 07, 1999 23:53:15 GMT
Comments:: i am just trying to find answers to my ?????'s just found that my mom has gastric carcinoids dont even know the extent of it yet, the drs havent even told her what it is. so ilooked it up on the net, it dont look good.
Age:: 18-29

Name:: Darla Coon
Email:: darla@sanishield.com
Web Site:: http://sanishield.com
Location:: Oak Ridge LA USA 71264
Date:: Saturday August 07, 1999 03:45:10 GMT
Comments:: Thank you for taking the time to share. It is appreciated.
Age:: 40-45

Name:: Mary Brandes
Email:: mbrandes@avalon.net
Location:: Iowa City IA USA 52246
Date:: Monday August 02, 1999 21:55:33 GMT
Comments:: Thank you for finding and sharing so much information, and for being so sunny and upbeat.
Age:: 66-79

Name:: Marie
Email:: dollvan@worldnet.att.net
Location:: CA
Date:: Sunday August 01, 1999 03:07:23 GMT
Comments:: I found your story very interesting! My carcinoid was discovered on my liver during gallbladder surgery in December 1996. Another surgery in March 1997 and the primary source was found in the ilium section of my small intestine. My liver had too much metatasis to be removed. So, we are just watching it. So far my liver function is normal as well as my blood tests. I do have diarrhea I never had prior and don't know if it is a result of intestinal surgery or carcinoid. So far I have had no treatment at all except for the surgery.
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: Mrs. Signe E. DeSautel
Email:: timrdez@hotmail.com
Location:: Grafton ND USA 58237
Date:: Saturday July 31, 1999 23:02:06 GMT
Comments:: I have just completed testing at Rochester Mayo Clinic and they removed a 3cm polyp. The diagnosis: Duodenum, bulb, endoscopic biopsy: Carcinoid (grade 1 neuroendocrine). Comment: In immunoperoxidase stains performed on paraffin-embedded tissue sections, the neoplastic cells stained strongly and diffusely for chromogranin and focally for gastrin. I will be returning in 3 days for more testing. I appreciate your NetPage for the information on Carcinoid. If you know of another site or an area on your site to go to for information about my specific diagnosis and comment, I would appreciate hearing from you. Thanks so much!! Signe
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: Janice Henderson
Email:: rahenderson@uswest.net
Location:: Boise ID 83713
Date:: Friday July 30, 1999 04:10:45 GMT
Comments:: I have been struggling with symptoms for years. Dr.'s have found high levels of somatostatin and are suspecting carcinoid. Doctors here are very uninformed about it and I am trying to learn more. One symptom which I suffer from in addition to fatigue and flushing is severe itching and burning over my entire body. Have you heard of this being a symptom? No one has been able to determine the cause or provide any relief including doctors at Vanderbuilt University and Mayo Clinic in 1993-94. Any help or advice you could give would be appreciated. My address is 10850 W. Treeline Ct., Boise, ID 83713. Phone # 208-376-7530
Referred By:: Found on internet
Age:: 50-55

Name:: Lesley M. Klein
Email:: lmklein2@engr.wisc.edu
Web Site:: http://none
Location:: Madison WI USA 53711
Date:: Thursday July 29, 1999 16:49:15 GMT
Comments:: I enjoyed your web page, very informative. I had a hard time finding info on Goblet Cell Carcinoid until finding Carcinoid.org's web site. I will know more about my condition after an appointment tomorrow. I am recovering from a hysterectomy and appendectomy. Through tests the goblet cell was found in my appendix.
Referred By:: self
Age:: 50-55

Name:: Peg
Email:: sxw@Bellatlantic.net
Location:: PA USA 19047
Date:: Wednesday July 28, 1999 01:33:58 GMT
Comments:: My husband was diagnosed with carcinoid syndrome 1 year ago. I very much enjoyed your story, and your optomistic outlook. I try to remind my husband that he's living with carcinoid not dying with it. Maybe reading your article will uplift his spirits. Thank you for your strength.
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: L. J. Bryan
Email:: ljbryan@web-access.net
Web Site:: http://www.web-access.net/~ljbryan/
Location:: TX USA
Date:: Tuesday July 27, 1999 09:30:37 GMT
Comments:: You have a great Website and I enjoyed visiting it. Please visit my Websites
Referred By:: an Email
Age:: 56-65

Name:: Margaret
Email:: brian @ cyclefit.freeserve.co.uk
Web Site:: http://freeserve
Location:: elton england ch2 4qd
Date:: Saturday July 24, 1999 00:12:10 GMT
Comments:: thank you for info, friend aged 35 recently diagnosed neuro endocrine cancer, treatment not working at present, very hopeful & positive, prayers & best wishes to you.
Referred By:: myself
Age:: 40-45

Name:: Nelda K. Fritcher
Email:: bfritcher@AOL.com
Location:: Granbury TX USA 76049
Date:: Wednesday July 21, 1999 19:46:33 GMT
Comments:: Susan, This is truly a remarkable page. I read it when I was first diagnosed with carcinoid. Now that I am not so sure what was going on again I decided to read your updated homepage. Thanks so much for your wonderful attitude which inspires so many of us when we get tired of fighting this disease. You truly give me a lift.
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Heather Kozak
Email:: heather@ductape.net
Web Site:: http://Plaza Heather
Location:: Borlänge Sweden 78453
Date:: Wednesday July 21, 1999 16:39:26 GMT
Comments:: Nice informational website!!! :-) Thank you for visiting mine!
Referred By:: You! :-)
Age:: 18-29

Name:: Ladypin
Email:: ladypin@pa.net
Web Site:: http://www.geocities.com/SouthBeach/Sands/1931/
Location:: Hanover PA USA 17331
Date:: Monday July 19, 1999 18:59:08 GMT
Comments:: Thank you for letting me enjoy your page, I found it to be very interesting and useful. I bookmarked it so I can check it out more later. Ladypin.<CENTER>Please Visit</CENTER>
Age:: 56-65

Name:: Gussie M.Hopkins
Email:: Gussie.Hopkins@bmdo.osd.mil
Location:: Upper Marlboro MD USA 20774-1482
Date:: Monday July 19, 1999 16:17:39 GMT
Comments:: Very Interesting and important information--Thank you
Referred By:: Sharon Wise
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Kris Nicholson
Email:: KANski127@aol.com
Web Site:: http://None
Location:: Rochester Hills MI USA 48306
Date:: Sunday July 18, 1999 01:22:41 GMT
Comments:: Good site for carcinoid info.
Referred By:: Myself
Age:: 40-45

Name:: Sandra Mount
Email:: SandyM43@aol.com
Location:: Mine Hill NJ USA 07803
Date:: Saturday July 17, 1999 01:05:28 GMT
Comments:: I was just looking around!
Referred By:: Myself
Age:: 40-45

Name:: Melinda Clark
Email:: cruz@futuresouth.com
Location:: Columbus MS USA 39702
Date:: Saturday July 17, 1999 00:09:20 GMT
Comments:: Enjoyed your page!! I am an RN and I have only seen 2 carcinoid tumors in the 8 years that I have been nursing. I was searching the net looking for information on chemoembolization for another nurse and came across your page. I wish you the best!
Referred By:: n/a
Age:: 30-39

Name:: Jett Cheek
Email:: jett@musician.org
Location:: Denton TX 76201
Date:: Friday July 16, 1999 19:13:26 GMT
Comments:: I'll get Nancy in touch with you soon. She has her own email address, but she can only access it at work (she's a school teacher and out for the summer).
Referred By:: Ruth Felderhoff
Age:: 30-39

Name:: melanie s. white
Email:: singwhite@aol.com
Location:: harahan LA 70123
Date:: Monday July 12, 1999 01:31:23 GMT
Comments:: i was diagnosd with carcinoid tumor in my intenstine after having my gall bladder removed in dec. 1997. the doctor found 3 tumors in
Age:: 40-45

Name:: Denise Tempest
Email:: SunshineLr@aol.com
Location:: Emmaus PA USA 18049
Date:: Sunday July 11, 1999 22:45:19 GMT
Comments:: I am interested in finding out as much as possible about this cancer. Thank you for such a wealth of information!
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: Annette
Email:: Nettie341@home.com
Web Site:: http://www.Charlottesgardens.com
Location:: Denver CO USA 80226
Date:: Sunday July 04, 1999 05:42:14 GMT
Comments:: Congratulations on the Sanger Award. Your tenacity for
Referred By:: Sanger Award page surfing

Name:: Valerie Adisek
Email:: valerie.adisek@jci.com
Location:: Milwaukee WI USA 53215
Date:: Thursday July 01, 1999 16:18:18 GMT
Comments:: Great story about your experience with carcinoid. I had a carcinoid tumor on my appendix 4 years ago. Doctors did a right hectomory (?). Just last week, my urologist did a ctscan and found a desity on my liver. I'm quite nervous. I have a doctor appt. on July 6th to get a referral to a liver specialist. Wish me luck.
Referred By:: surfing
Age:: 30-39

Name:: Tina Bashline
Email:: tbashlin@icclink.com
Location:: Lawrenceville NJ U.S.A. 09648
Date:: Wednesday June 30, 1999 20:44:22 GMT
Comments:: Thank you for your candid comments, which I am sure are helping a lot of people (patients and health care "professionals") learn more about this rare condition. I am a medical writer associated with Sandostatin Injection and Sandostatin LAR Depot... so it is important for me to be able to convey in my writing the terrible impact that carcinoid syndrome can have on patients. Unfortunately, misdiagnosis and delayed diagnosis are all too common. Thank you again for the service you are providing. Good luck to you! Tina Bashline
Referred By:: Carcinoid Cancer Foundation website
Age:: 40-45
Entry:: * * * PRIVATE ENTRY * * *

Name:: Leta Kay
Email:: letakay@shreve.net
Location:: Marshall TX 75670
Date:: Wednesday June 30, 1999 02:38:35 GMT
Comments:: I simply want to say thank you for taking time to share your story. I had never heard ofcarcinoid cancer, until my sister was diagnosed with it. She is undergoing surgery as I write this for the complete removal of her colon. Your information and references will prove to be a great help to our family. God bless you and keep you in good health.
Age:: 46-49

Name:: Sue
Email:: sblack@chromalloy.com
Location:: Torrance CA USA 90504
Date:: Friday June 25, 1999 22:49:45 GMT
Comments:: My husband has had stomach problems (pain & diarrhea) for years & has had CT's of Abdomen, Ultrasounds, Upper GI, Colonoscopy, & 5-HIAA Urine test. All normal! He has flushing episodes too. He's changed doc's many times & now has a doctor who seems determined to get to the bottom of this with us. She suggested Octreoscan to confirm diagnosis of Carcinoid. I've been so scared about this.Wouldn't something have shown up on one of the other tests if he has a carcinoid tumor? When I read your guest book entries, I became more hopeful to see that many people have had this for up to 18 yrs & more! Is this a normal range or are these people considered miracles? I'm so scared at what lies ahead for my husband. Good luck to you.
Referred By:: looking for sites on carcinoid
Age:: 30-39

Name:: Lori Duchrow
Email:: lduchrow@netscape.net
Location:: Rhinelander WI usa 54501
Date:: Thursday June 24, 1999 21:32:29 GMT
Comments:: My Mom was diagnosed with a mid-gut carcinoid in 1996. Your story was very comforting for me. I am "making waves" with her doctors and sending her records to Dr. Warner. Reading your story has reinforced that I am doing the right thing. Thank you Susan
Referred By:: carcinoid.org
Age:: 40-45

Name:: Dr M Jong
Email:: endodocjong@netscape.net
Location:: London United Kingdom W12
Date:: Tuesday June 22, 1999 18:52:50 GMT
Comments:: Interesting
Age:: 18-29

Name:: Lowell Geddes
Email:: geddesl@nbccsj.gov,nb.ca
Location:: Canada
Date:: Monday June 21, 1999 13:38:16 GMT
Comments:: Thank you for your information. My wife found out yesterday that she has Carcinoid tumor in her bowel and it has spread to her liver.We have been looking for the past 10-15 years now we know. My only nope is that something can be done about it. Thank you
Age:: 46-49
Entry:: * * * PRIVATE ENTRY * * *

Name:: Bert Boekholt
Email:: boekholt@webtime.com.au
Web Site:: http://N/A
Location:: Brisbane .Qld. 4067 Australia
Date:: Friday June 18, 1999 14:08:27 GMT
Comments:: Very interesting.
Referred By:: Found by serving the net.
Age:: 66-79

Name:: Luann Schoenfeld
Email:: schoenfeld@dragonbbs.com
Location:: Manchester OH USA 45144
Date:: Wednesday June 16, 1999 03:52:22 GMT
Comments:: Along with inflammatory arthritits, fibromyalgia, high sugar, asthma--this syndrome fits my other symptoms. Are these illnesses often found together?
Age:: 40-45

Name:: Danna Koelling
Email:: dannakoelling@msn.com
Web Site:: http://---
Location:: Tucson AZ 58739
Date:: Saturday June 12, 1999 23:08:21 GMT
Comments:: Hi Susan - Glad to hear from you. I'm the one who wrote about the MALIN genealogy information. Will check out your genealogy spots and then probably email you again. Nice web site. Danna
Referred By:: Susan herself
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: Carol
Email:: cmk@flex.net
Location:: Woodlands TX US 77380
Date:: Saturday June 12, 1999 14:40:29 GMT
Comments:: enjoyed your web page
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: Denise Blanchette
Email:: denise@splusnet.com
Location:: Searsport ME USA 04974
Date:: Friday June 11, 1999 18:07:38 GMT
Comments:: Found your resources very helpful tanks
Age:: 30-39

Name:: Kelli Clayton
Email:: kc1stwest@sprintmail.com
Location:: Kansas City MO U.S. 64118
Date:: Friday June 11, 1999 16:59:14 GMT
Comments:: This registration is for my mother, Pat May (Wichita, KS), age 65, who two days ago went in for a hysterectomy. When the doctors got in there, they noticed tumors on her small intestine. They turned out to be carcinoid, about a dozen of them, and removed 3 feet of her small intestine. There was also another place lower on the intestine with a grouping of tumors, which they removed. She, nor any member of our family has ever had cancer. We are very anxious to learn more about this and would appreciate any resources you could direct us to. God bless you for initiating this website!
Age:: 66-79

Name:: LaVonne R. Hanlon
Email:: lrhanlon@aol.com
Location:: Laurel MD USA 20724
Date:: Friday June 11, 1999 01:55:51 GMT
Comments:: Sorry to learn of your health problems, but think it is great that you took the time to share information for the benefit of others. Hope you can update your Secrest-Beeson branch of the family and share it with me!
Referred By:: Susan
Age:: 56-65

Name:: LaVonne R. Hanlon
Email:: lrhanlon@aol.com
Location:: Laurel MD USA 20724
Date:: Friday June 11, 1999 01:52:17 GMT
Comments:: Sorry to learn of your health problems, but think it is great that you took the time to share information for the benefit of others. Hope you can update your Secrest-Beeson branch of the family and share it with me!
Referred By:: Susan
Age:: 56-65

Name:: Jessica Hull
Email:: Jesskichickfive@yahoo.com
Location:: Pittsburgh PA US 15223
Date:: Sunday June 06, 1999 03:34:22 GMT
Comments:: I just found out that my mother has carcioid cancer, two weeks ago. It is pretty severe but the main organs look ok. Thanks for your hope. My mom's story is very simular. Her e-mail address: Joanie05@bellatlantic.net
Age:: 18-29

Name:: Pauline Whitehurst from England
Email:: SSARITTA@aol.com
Web Site:: http://Address: 13 Amblefield Way, Stafford,ST16 1SU, England
Location:: Fairfax VA USA VA22033
Date:: Saturday June 05, 1999 19:21:46 GMT
Comments:: Diagnosed Nov 97 after removal of tumour blocking colon - previously very similar to yourself incl gall bladder removal - would like to get in touch - my Dr at home doesn't give much info - unfortunately am not yet on E-mail. I return home to England 17th June.
Referred By:: my daughter Sarah Mayle, E-mail SSARITTA on AOL
Age:: 50-55
Entry:: * * * PRIVATE ENTRY * * *

Name:: Nancy
Email:: TheTheiges@aol.com
Location:: Palm Desert CA USA 92211
Date:: Saturday June 05, 1999 05:56:14 GMT
Comments:: Thanks for your excellent site which was & is truly a "shining star" since learning of my carcinoid cancer in Jan. '99. Would be especially interested in hearing from anyone who also has the variant referred to as "presacral" Mine has metastases in the skeletal system. Current Rx is Sandastatin LAR & Interferon-alpha 2B.
Referred By:: Accidental "discovery" while searching carcinoid info
Age:: 56-65

Name:: Terry
Email:: MaddySB@Aol.com
Location:: Sound Beach NY USA 11789
Date:: Friday June 04, 1999 22:15:07 GMT
Comments:: I have been a carcinoid survivor for 18 years, having my first lung surgery at the age of 16. Thanks so much for the support on the site and the info. Keep up the good work!
Referred By:: carcinoid cancer foundation
Age:: 30-39

Name:: Bonnie Groth
Email:: bcgroth@juno.com and bcgroth@aol.com
Web Site:: http://n/a
Location:: Chandler AZ USA 85225
Date:: Friday June 04, 1999 01:32:59 GMT
Comments:: just checking you out! Lots of interesting stuff - I'll be back when i have more time!
Referred By:: you!!
Age:: 30-39

Name:: Vaughn L. Irwin
Email:: virwin@viningsind.com
Location:: Marietta GA USA 30060
Date:: Thursday June 03, 1999 15:06:32 GMT
Comments:: Great site! Been a 'Sandostatin' user for ~11 yr (one of original "LAB RATS"); doing well. Dx in 1985 (small intestine, resection), spread to liver (>80%); current liver involvement < 10%. HANG IN THERE!
Referred By:: self
Age:: 56-65

Name:: Linda Collura
Email:: lcollura@prp.gs.net
Location:: Metairie LA US 70005
Date:: Wednesday June 02, 1999 22:27:49 GMT
Comments:: One of family members has been diagnosed with Carcinoid Cancer. I am just trying to find out all I can about it.
Referred By:: Cancer Center`
Age:: 30-39

Name:: Sheron Petesch
Email:: jspete@digisys.com
Location:: Kalispell MT 59901
Date:: Wednesday June 02, 1999 21:38:30 GMT
Comments:: Your story sounds like mine would be.I helps to know that
Referred By:: Your Story
Age:: 56-65

Name:: Kimberly Maddox
Email:: kimberlymaddox@hotmail.com
Web Site:: http://www.trainachild.com
Location:: Enterprise AL USA 36330
Date:: Wednesday June 02, 1999 17:03:27 GMT
Comments:: Hi! My Dad is in the hospital being tested. Found carcinoid polyp in his colon, we a waiting for liver biopsy info. My Mom has asked me to begin researching treatment options. Dr does not think it is actually the "syndrome" yet it is a carcinoid. Any direction you can give would be appreciated. Your site is a good start for me! Blessings, Kimberly<><
Referred By:: Types in carcinoid and found you listed
Age:: 30-39

Name:: Rae
Email:: bill@billr.sparks.nv.us
Location:: NV US
Date:: Saturday May 29, 1999 22:28:28 GMT
Comments:: My mother was diagnosed with carcinoic cancer in March of 1997. She now weighs 73 pounds. She has received no treatment but Sandostatin. Would you be interested in writing to my mother? We have searched everywhere for some treatment. She has even taken Shark Cartlidge. I believe that she would love to hear from you. Let me know.
Age:: 50-55

Name:: Carol Schneider
Email:: ECSCHNEID@ aol.com
Location:: HELLERTOWN PA USA 18055
Date:: Friday May 28, 1999 19:04:29 GMT
Comments:: THIS WEB SITE WAS VERY HELPFUL TO ME. THANK YOU SO MUCH. IF YOU WOULD HAVE ANY SPECIFIC INFO. ON APPENDIX CARCINOID TUMORS I WOULD APPRECIATE READING IT. THANKS AGAIN, CAROL S
Age:: 30-39

Name:: Karen Hendrickson
Email:: KPKT@one.net
Location:: Cincinnati OH U.S. 45245
Date:: Tuesday May 25, 1999 14:29:02 GMT
Comments:: I just found your web site and it looks great. I'm looking for information concerning radioablative therapy in the Netherlands. I'm currently under the care of Dr. O'dorisio at the James Cancer Center at OSU and he is considering sending me to Rotterdam for treatment.
Age:: 30-39

Name:: Catherine Bitner-Volk
Email:: BitnerVolk@aol.com
Location:: Peoria IL USA 61603
Date:: Monday May 24, 1999 05:47:19 GMT
Comments:: Just looking for any and all information, esp. concerning radiofrequency ablation or heat kill of liver tumors.
Age:: 46-49

Name:: Arlene Rizzardi
Email:: Riz-house @ webtv.net
Location:: Minersville PA USA 17954
Date:: Saturday May 22, 1999 23:54:28 GMT
Comments:: Thank you for taking the time to share this information. I was diagnosed with Carcinoid Syndrome in August 1998. I had a tumor removed from my colon and have been giving myself shots of Sando 3X a day until last month I started the LAR. Have not been doing as well. I am new to the internet and have only just begun to find info on Cardinoid and people to talk to about it. This is opening up a whole new world to me and I am grateful for people like you who are there to support others.
Age:: 46-49

Email:: norm8@telstra.easymail.com.au
Location:: western australia
Date:: Saturday May 22, 1999 06:27:56 GMT
Comments:: Thank you , you have answered two or three questions for me reguarding appetite and bowel problems. I have carcinoid carcinoma in the liver and small bowel, Norm.
Age:: 66-79

Name:: Nickolette Way
Email:: waycnccj@aol.com
Location:: Sunland CA USA 91040
Date:: Saturday May 22, 1999 06:02:35 GMT
Comments:: Thank you for all of the valuable information on your web site. I have taken the long way 'round to discovering I have carcinoid. The doctors first dx all my heart problems and I went through a multitude of tests and tried to learn all I could about heart failure and cardiomyopathy. Now I have been diagnosed with carcinoid in addition. I have been studying as fast as I can to learn about this. Your site not only gives information but adds the human touch/the contact with someone else going through this that I have greatly needed. Thanks
Age:: 46-49

Name:: Allys Smith
Email:: allys@worldnet.att.net
Location:: Solana Beach CA USA 92075
Date:: Friday May 21, 1999 17:28:01 GMT
Comments:: My husband has just been diagnosed with a small bowel carcinoid which has metatisized to the liver. Decisions are now being made as to the best treatment.
Referred By:: Self
Age:: 66-79

Name:: Duchess Martin
Email:: dlmartin@aep.com
Location:: Columbus OH USA 43228
Date:: Friday May 21, 1999 00:26:38 GMT
Comments:: Mom, Pearl Ruth Martin, was diagnosed 6 years ago with carcinoid colon cancer. Your story could be hers if you change the name. We've not had contact with any other carcinoids so far. This is my first attempt to reach out. You'll be hearing from me soon and seeing me around. Put us on your prayer lists. Duchess
Referred By:: found you from Alta Vista
Age:: 40-45

Name:: Rosemarie K. Thiebes
Email:: thiebes@sunline.net
Location:: Rotonda West FL US 33947
Date:: Thursday May 20, 1999 04:10:17 GMT
Comments:: I was diagnosed with lung carcinoid May, 1997. One third of my right lung was removed, but the cancer had metasisized to one of the lymph nodes. Normally this tpe of cancer only responds to surgery, but since it had metasisized, I was given chemotherapy of etopiside and cystplatin. I developed a swelling above my left collarbone five months ago. CT scans reveal small masses, but too small and location makes it impossible to biopsy. I need a docotr who specializes in carcinoids. Ironically, I live 30 miles from Sarasota, but never heard about the Seminar. Any info you could provide re carcinoid doctors would be appreciated. Rosemarie age 55
Referred By:: self

Name:: Geri Hallenbeck
Email:: gmhal@aol.com
Location:: Sumner WA USA 98390
Date:: Wednesday May 19, 1999 02:42:01 GMT
Comments:: My husband has had carcinoid syndrome since 1995. He is so thin. 6ft2in and only weights 135. He gets very cranky and sleepy. Is the sleepiness part of the disease? He takes 100 mg morphine AM and PM to control the pain and Imodium for the diarrea. He can still eat three meals a day and gets around. Most of the problem is the sleepiness and he can't stay awake after dinner. Glad to find this web site. Maybe I can find some answers. I have read alot about this disease in the last few years. It is very slow growing and there is no treatment. Just alot of prayer!
Referred By:: Just Surfed In
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: John Oathout
Email:: megatherium@webzone.net
Location:: Tulsa OK USA 74133
Date:: Tuesday May 18, 1999 13:18:40 GMT
Comments:: Mom went in yesterday for repair surgery on her colon. When the doc opened her up her found extensive carsinoids in the ovaries, liver, and colon. Thank you for providing support information for the friends, families, and patients of carcinoid.
Referred By:: Links from other pages
Age:: 30-39

Name:: Mr Loren W Hall
Email:: lhall@dycon.com
Date:: Saturday May 15, 1999 17:24:03 GMT
Comments:: Looking for a cure - let us know when you hear of one.
Age:: 66-79

Name:: lisa gray
Email:: lgray @pcdi.com
Location:: norcross GA usa 30092
Date:: Thursday May 13, 1999 20:11:44 GMT
Comments:: my mother has been diagonosed with carcinoid. originall site was the appendix, it is metatsatic, stage 4 or advanced,she is only 60 years old. my family is in shock and we have been told she only has a 10-15% chance of beating this. i have been doing a lot of research but have not found any concrete stats on carcinoid survival rates. we have also been told that the chemo drugs like sandostatin are only 15-20% effective. your story is an inspiration in this sea of doom. i would love to hear from you. thank you and god bless.
Age:: 30-39

Email:: lcorke@reax.com
Location:: OH
Date:: Thursday May 13, 1999 19:04:13 GMT
Comments:: my dad has carcinoid cancer and i was just trying to find out more about this so i can better understand what he is going through along with my mom. this helped alot thanks
Age:: 18-29
Entry:: * * * PRIVATE ENTRY * * *

Name:: Bonnie Morrison
Email:: mrsmisc@bc.sympatico.ca
Location:: Vancouver BC Canada
Date:: Tuesday May 11, 1999 13:40:05 GMT
Comments:: Hello
Age:: 50-55

Name:: Jeff Smith
Email:: jeff.smith@hunterlink.net.au
Location:: Belmont North Australia 2280
Date:: Monday May 10, 1999 12:56:22 GMT
Comments:: I was diagnosed in August 1997 and discovered your site soon after while I was trying to find more about this disease. There is much more in your site now which is really great. Thank you, I will keep looking with interest.
Referred By:: surfing
Age:: 46-49

Name:: Melinda Gonzales
Email:: Treasureup@aol.com
Location:: Rancho Cucamonga CA 91730
Date:: Saturday May 08, 1999 21:16:27 GMT
Comments:: Hi cousin!
Referred By:: you
Age:: 40-45

Name:: Robert Miller
Email:: robertpmil@aol.com
Location:: Manassas Park VA USA 20111
Date:: Wednesday May 05, 1999 22:41:15 GMT
Comments:: Thanks for constructing this site. Include me in your circle - I was just tentatively diagnosed
Age:: 30-39

Name:: Gerry D. Williams (I am female)
Email:: gerrymcpdw@aol.com
Web Site:: http://none
Location:: Thousand Oaks CA U.S.A. 91360
Date:: Tuesday May 04, 1999 19:59:13 GMT
Comments:: I have had pain in my LRQ along with strange hormone-like reactions (low blood-sugar, inability to tolderate ANY kind of stimulant from caffine to chocolate) for the past 15 years and have told every Dr. I've ever seen about it -- to no avail. I still don't know what this pain is but it acts up and makes me weak. In the past month, I've started having ongoing diarrhea. Am going to a gastroenterologist for a colonoscopy. It seems most my symptoms match many of those of a carcinoid. Since I live alone, I'm scared. That's why your story gave me hope. Tomorrow I leave for Phoenix on a business trip. I will try to contact you. Thank you again!!! Gerry Williams (I'm female)
Referred By:: self - found you on the internet
Age:: 56-65

Name:: rose ganzon
Email:: rose.ganzon@excite.com
Location:: Dallas TX USA 75214
Date:: Tuesday May 04, 1999 05:31:17 GMT
Comments:: My dad has been diagnosed with carcinoid last month.
Referred By:: surfing
Age:: 30-39

Name:: Stephanie Hurley
Email:: davensteph@c-usa.com
Location:: clearwater FL 33765
Date:: Tuesday May 04, 1999 03:24:29 GMT
Comments:: Susan,
Referred By:: self
Age:: 18-29

Name:: joe pieri
Email:: pieri@erols.com
Location:: media PA usa 19063
Date:: Monday May 03, 1999 12:49:20 GMT
Comments:: i found your story very encouraging. my wife was diagnosed oct 1998 and its been a real struggle to put all the pieces together. Thinking of visiting Dr. Kvolls..seems like alot the the literature is written by him. Wish I had know about the seminar..i would have definetly been there. Good luck to you and keep up the good work
Age:: 46-49

Name:: William Drinkwater
Email:: bill@drinkh2o.sps.mot.com
Location:: Mesa AZ U.S.A. 85205
Date:: Thursday April 29, 1999 19:50:39 GMT
Comments:: Just stopped in to see about the Wednesday Jam Sessions.
Referred By:: Motorola Musicians Club Web Page
Age:: 30-39

Name:: Jillmarie Murphy
Email:: goldens2@nycap.rr.com
Location:: Albany NY USA 12203
Date:: Wednesday April 28, 1999 00:53:43 GMT
Comments:: Thanks for a very informative site.
Age:: 30-39

Name:: Angela
Email:: angelab@mannington.com
Location:: Alloway NJ USA
Date:: Tuesday April 27, 1999 14:37:06 GMT
Comments:: My mother-in-law had her first carcinoid tumor removed in Feb. 93 and has had 4 surgeries since. I am looking for any useful infomation and I sure found some here. Thanks for providing help and reassurance to others who are suffering this awful disease. Good luck to you and your family.
Referred By:: searching for info on carcinoids
Age:: 18-29

Name:: Kathy Henderson
Email:: soot@tconl.com
Location:: Omaha NE USA 68144
Date:: Sunday April 25, 1999 23:01:23 GMT
Comments:: My son, age 36, is seeing an oncologist in Omaha this week, but I do not know how experienced she is with carcinoid. What questions should he ask of her? Also, do you know of any carcinoid specialists in Omaha (or in the Midwest)?
Age:: 56-65
Entry:: * * * PRIVATE ENTRY * * *

Name:: Karen Steinbrook
Email:: karenmel@bright.net
Location:: Frankfort OH USA 45628
Date:: Sunday April 25, 1999 19:55:06 GMT
Comments:: Age is my mother's as she has been dx with carcinoid mets to liver. Primary site unknown at this point. Extremely healthy with approximately 2 months of gastric s/s. Multiple lesions with one large area pressing on stomach. I would be grateful for any advice or encouragement for her. Her name is Wilma Lowe. Address is 1169 St Rt 35 Washington CH, Ohio 43160. She is not computor familiar but I can relay any information. Thank You, Karen
Age:: 56-65

Name:: Billie Sue Skinner
Email:: bubba1@sunherald.infi.net
Location:: Ocean Springs, MS USA 39564
Date:: Saturday April 24, 1999 04:26:57 GMT
Comments:: I enjoyed reading your web page and comments from others. I recently had a lung removed because of carcinoid tumor and because of the location, 1/5 of my atrium also had to be removed. Doctors removed 19 lymph nodes, and only one node showed carcinoid cancer cells. I have an appointment with the University of Alabama at Birmingham, AL within the next week, and hopefully they will find a treatment that will "kill" the remaining cells. If I find a new treatment, I will let you know. Thanks for the web information, and may God bless you in your fight against this strange type of cancer.
Age:: 56-65

Name:: Nancy Pfeffer
Email:: ngpfeffer@hotmail.com
Location:: Albany CA usa
Date:: Friday April 23, 1999 05:13:41 GMT
Comments:: My brother-in-law has just been diagn9osed with carcinoid syndrome. Thanks for all the great information. Do you know of a carcinoid specialist in San Francisco?
Referred By:: surfing
Age:: 46-49

Name:: Nancy Davidson
Email:: dnancy@hotmail.com
Location:: Tunkhannock PA USA 18657
Date:: Thursday April 22, 1999 17:55:08 GMT
Comments:: My mom has had Carcinoid tumors since 1978. She is now 84 and is a remarkable woman. I only today discovered your webpage. Thanks for having it!
Referred By:: self
Age:: 50-55

Name:: Bill White
Email:: whitewme@vianet.on.ca
Location:: North Bay Canada P1B 7W7
Date:: Thursday April 22, 1999 01:08:30 GMT
Comments:: I have had the top lobe of my right lung removed because it contained a Carcinoid tumor. The tumor was contained, and the lymph nodes were not malignant. PTL
Referred By:: i found you through the ACS
Age:: 56-65

Name:: CAROL WHITE
Email:: BCSUNTAN@WORLDNET.ATT.NET
Web Site:: http://CARCINOID
Location:: N. HALEDON NJ USA 07508
Date:: Saturday April 17, 1999 15:10:40 GMT
Comments:: DEAR SUSAN,
Referred By:: NONE
Age:: 40-45

Name:: Denise Bristow
Email:: Cole@hotnet.net.au
Location:: Devonport Australia 7310
Date:: Saturday April 17, 1999 06:15:22 GMT
Comments:: I have recently been diagnosed with carcinoid, have had surgery and am recovering well. Thankyou for your information, my husband David and I are eager to learn as much information as possible on this condition.
Age:: 50-55

Name:: Pat Scotti
Email:: psfull@aol.com
Location:: Palm Harbor FL US 34683
Date:: Tuesday April 13, 1999 20:23:19 GMT
Comments:: My mom has carcinoid in her liver, she was diagnosis in 1993. I would love to hear from you.
Referred By:: your web page
Age:: 46-49

Name:: Kathy Newman
Email:: kjatn@aol.com
Location:: Rosamond CA USA
Date:: Tuesday April 13, 1999 19:55:40 GMT
Comments:: My mom has just been diagnosed with carcinoid nodules in her
Referred By:: just looking
Age:: 30-39

Nam