Name:
Melanie Williams
Email:
candmwills@cox.net
Location:
Dana Point CA USA 92629
Date:
Wednesday January 29, 2003 09:10:24 GMT
Comments:
Just letting you know I have a new e-mail address.
Age:
56-65
Name:
Carol A. Smith
Email:
jsmith227@kc.rr.com
Location:
Parkville MO USA 64152
Date:
Saturday January 25, 2003 22:49:56 GMT
Comments:
Diagnosed January 25, 2003. We will use your website to guide us in learning and participating, to understand what has just changed my life and that of my family. Thank you.
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
India Rouse
Email:
india.rouse.cwxp@statefarm.co,
Location:
Dana Point CA USA 92629
Date:
Thursday January 23, 2003 16:35:48 GMT
Comments:
I received an email from a friend in Las Vegas. Your website was listed and I felt compeled to pull it up. I am so glad that I did. What a wonderful world of information that you have compiled. It will take me awhile to read it all. I want to congratulate you and wish you all the best in your endeavors.
My daughter lives in Scottsdale and we go to Arizona several times a year. I have other family there as well. I hope one day we could meet.
I live in Dana Point, CA.
I wish you much health and happiness.
Many Blessings, India.
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
India Rouse
Email:
india.rouse.cwxp@statefarm.co,
Date:
Thursday January 23, 2003 16:34:58 GMT
Comments:
I received an email from a friend in Las Vegas. Your website was listed and I felt compeled to pull it up. I am so glad that I did. What a wonderful world of information that you have compiled. It will take me awhile to read it all. I want to congratulate you and wish you all the best in your endeavors.
My daughter lives in Scottsdale and we go to Arizona several times a year. I have other family there as well. I hope one day we could meet.
I live in Dana Point, CA.
I wish you much health and happiness.
Many Blessings, India.
Name:
Michael Donohue
Email:
mpd@hevanet.com
Location:
Gresham OR usa 97080
Date:
Wednesday January 22, 2003 23:05:33 GMT
Comments:
Dear Susan:

Thank you for posting all of the detailed information regarding your history. I was diagnosed after emergency
exploratory surgery in Aug/'99 to remove "nickle-sized" tumor in upper intesting, and with metastes to the liver.
I intially started injecting Sandostatin twice daily, but
really couldn't detect a drastic difference from them, so I
discontinued them. However, the extreme fatigue and shortness of breath have made me wonder whether to go back
to the injections to slow down the progression of CS.

Michael Donohue
Referred By:
Located via google search
Age:
56-65
Name:
Michael Donohue
Email:
mpd@hevanet.com
Location:
Gresham OR usa 97080
Date:
Wednesday January 22, 2003 23:05:31 GMT
Comments:
Dear Susan:

Thank you for posting all of the detailed information regarding your history. I was diagnosed after emergency
exploratory surgery in Aug/'99 to remove "nickle-sized" tumor in upper intesting, and with metastes to the liver.
I intially started injecting Sandostatin twice daily, but
really couldn't detect a drastic difference from them, so I
discontinued them. However, the extreme fatigue and shortness of breath have made me wonder whether to go back
to the injections to slow down the progression of CS.

Michael Donohue
Referred By:
Located via google search
Age:
56-65
Name:
hanna
Email:
jtmj54@yahoo.com
Location:
lapine OR 97739
Date:
Tuesday January 21, 2003 18:22:59 GMT
Comments:
i enjoyed your story very much and it touched me very much too.with gods help you well get better and live a long life. may god be with you. T.H. :) 2003
Age:
50-55
Name:
Martin Drennan
Email:
ellie_d4@hotmail.com
Location:
Birmingham, England England
Date:
Saturday January 18, 2003 15:11:31 GMT
Comments:
Your site is excellent and has provided us with the most information so far since I was diagnosed in May 2002. My oncologist hasn't a clue about treatment for this condition and we are now armed with your info!
Hope you are still well and kicking ass!
Name:
Beverly K. Pegg
Email:
beverlypegg@msn.com
Web Site:
http://None
Location:
Spokane WA USA 99216
Date:
Friday January 17, 2003 08:43:55 GMT
Comments:
I was diagnosed with Carcinoid Syndrome in 1988 after searching for diagnosis since having a melanoma (atypical) removed from my face in 1980. I am still looking for help...should say begging! Thank you.
Referred By:
Carcinoid Cancer Foundation (found in search)
Age:
66-79
Name:
Christine James
Email:
ascot@powerup.com.au
Location:
Ascot Australia 4007
Date:
Friday January 10, 2003 02:51:47 GMT
Comments:
It's hard to find info on this disease, or here in Brisbane, Australia, very hard to find anyone with knowledge of interest to treat. Your page helps.
Age:
50-55
Name:
Myra Piracci
Email:
piracci@att.net
Location:
Hackensack NJ USA 07601
Date:
Friday January 10, 2003 02:16:24 GMT
Comments:
Thanks so much for all the information. I've luckily also discoved the Carcinoid Foundation web site - very helpful of course. I was diagnosed with Carcinoid this past October but I've had Carcinoid Syndrome for about 6 years now. Had been told it was rosacea. I anxiously await my appointment with Dr. Warner at the end of this month. I hope this finds you feeling well. Thank you again be being such a great resource! All the best to you.
Referred By:
my sister found your website
Age:
40-45
Name:
Carol Abbott
Email:
emcaabbott@juno.com
Web Site:
http://www.carcinoid.org
Location:
Bel Air MD USA 21015
Date:
Thursday January 09, 2003 23:52:42 GMT
Comments:
Thank you so much for the information you have provided. Its always helpful when you know someone else has gone through many of the same things. It helps to not feel so alone. you have done a very thorough job on your site. Thanks again.
Referred By:
a friend of my daughters
Age:
56-65
Name:
Gail Marie Mengo, Esq.
Email:
gmm2889@cox.net
Web Site:
http://Your home page
Location:
Chandler AZ USA 85224
Date:
Thursday January 09, 2003 04:30:19 GMT
Comments:
My wife we believe has the same problems as you have. She has had the same run around from Mayo. She would like to talk to you as soon as possible. Our home number is (480) 814-7742. Please send the article on the local doctors to home at 1287 N. Alma School Rd, #241, Chandler, AZ, 85224.
Thanks,
Steve Berry
Age:
50-55
Name:
Thomas Richardson
Email:
tntrich@tcainternet.com
Location:
Grambling LA USA 71245-0258
Date:
Wednesday January 08, 2003 04:38:34 GMT
Comments:
Your life story sounds like mine. Mainly the dates differ. Iwill write later with some questions.
Referred By:
Phillis Earles, Librarian, Prarie View Univ., Prairie View, TX.
Age:
66-79
Name:
Sandy
Email:
rothsteinj@hotmail.com
Location:
New Hope MN USA 55427
Date:
Friday January 03, 2003 02:58:09 GMT
Comments:
I e-mailed in March of 2002. I am now emailing 1-02-03. I am dealing with carcinoid tumors also and find your sight very informitive has helped me alot when I feel sort of lost in the cancer. A lot of sytems but reading info sounds just like what others go through. I am do sandostatin injections every 4 weeks but am still dealing with servere ab pains and diareah was in hospital over Thanksgiving though with constipation. This cancer really takes it toll some days and takes time to recover. But really appreciate all the info you put out on the web and the links.
You are God sent for many.
Sandy
Age:
50-55
Name:
Pam Harder
Email:
pamnjohn @global2000.net
Location:
Altamont NY USA 12009
Date:
Tuesday December 31, 2002 18:29:18 GMT
Comments:
My husband has carcinoid...mets to his liver...no known primary. It has been two years since he was diagnosed. He is aware of the information available and the personal contacts that are possible but so far is not partaking!

I read all I can and try to be his advocate. Right now I'm urging him to contact Dr. Warner. I think his oncologist is way too"relaxed". Thanks for being there! Pam
Age:
56-65
Name:
jane maher
Email:
jhmrn@hotmail.com
Location:
minneapolis MN usa 55123
Date:
Monday December 30, 2002 00:51:00 GMT
Comments:
My dad just recieved the news that he has this cancer in his small bowel and he just had surgery. Any words of wisdom would be greatly appreciated.
Name:
Michelle Fyfe
Email:
FyfeFamily@xtra.co.nz
Location:
Hamilton New Zealand 2171
Date:
Saturday December 28, 2002 11:55:35 GMT
Comments:
Thanks for the run down on how things have been for you . You are right the carcinoids do act differently. I am at year 3or 4 of diagnoisis & treatment I am always being told how positive I am & how much stenghth I have. Well you have to don't you.I am looking at treatment with the injections but they feel my symptoms are not bad enough at present. I am glad at the moment it has you @ holdimg clear.I hope this continues. A big thank you for the inspiration to follow the golden rule. I will be onto it when i return home in a couple of days.
Thanks Michelle
Referred By:
msn search
Age:
30-39
Name:
Kathryn Luquette
Email:
twelane@aol.com
Location:
Hamshire TX US 77622
Date:
Friday December 27, 2002 02:54:05 GMT
Comments:
Thank you for all the info. I haven't found a support group
close to where I live, so I may e-mail you from time to time
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
ken markham
Email:
kenmacsep@bigpond.com
Location:
perenjori australia 6620
Date:
Friday December 20, 2002 08:52:44 GMT
Comments:
i have similar symptoms to brett (of brett & michelle's story australia . when i first started hunting there were only 2 hits and one was via the arthritis site.i'm not sure if i have carcinoid syndrome but i sure am having a rotten time .your story and others keep me going as i see a lot worse off than me .my best wishes to all with or connected with this disease .may you beet the hell out of it . I'm very sporadic with on the net so if i get any emails i will answer them eventually .
best regards from ken
Referred By:
found by search for carcinoid on web
Age:
50-55
Name:
Naomi Rickard
Email:
Kat_68@iowatelecom.net
Location:
Lucas IA U.S.A. 50151
Date:
Friday December 20, 2002 03:28:11 GMT
Comments:
I lost my father to Terminal Metastaic Carcinoid Tumor, due to Metastatic to Liver / Carcinoid Tumor. He was diagnoised with it in May of last year and he we lost him in August. I took care of him for three months before we lost him and in that time period he went thru so much pain. Yet he was and will always be the strongest man that I have ever known. I live on today because I am his legacy.

I thank you for having this site .... it means a lot to know that there are others out there that have been in my shoes and know how I feel.
Referred By:
Searching
Age:
30-39
Name:
Ronda Ray
Email:
r.ray@optusnet.com.au
Location:
Australia
Date:
Thursday December 19, 2002 10:05:49 GMT
Comments:
An update on my carcinoid appendix.I had the Octreoscan and NO CANCER! I feel very fortunate. I will also have a follow-up Octreoscan in six months.Thankyou for your wonderful website it has helped me enormously.Love,Ronda.
Age:
40-45
Name:
Barbara Schickedanz
Email:
bschickedanz@yahoo.com
Location:
Sun City Center FL USA 33573
Date:
Wednesday December 18, 2002 03:17:57 GMT
Comments:
I was diagnosed with with 5 Carcinoid Tumors Metesized to Liver in 1999 and inoperable. I have had 3 chemo-embolizations done and 1 Radio Frequency Abalation completed. I receive Sandostatin monthly. It has been a long patient active experience. We are currently moving to our new home in Florida.
Referred By:
searching
Age:
50-55
Name:
Patricia B. Ward
Email:
kdoghowls@aol.com
Location:
Pace FL USA 32571
Date:
Tuesday December 17, 2002 01:50:01 GMT
Comments:
Our son Kevin, lost his battle with Carcinoid on December 1, 2002, at age 40. He was diagnosed 1/15/1997. He fought a long, hard battle every day. We are heartbroken. Thanks for all your information over the years.

Pat and Edsel Ward, Parents
Referred By:
Kevin, my son
Age:
56-65
Name:
Mary Ann Kuper
Email:
ladymak2002@yahoo.com
Location:
Northfield NH USA 03276
Date:
Thursday December 12, 2002 02:05:48 GMT
Comments:
I am very glad to have found this site again.
Referred By:
Self
Age:
40-45
Name:
Kathy Bauder
Email:
bkathleen@msn.com
Location:
Nampa ID usa 97457
Date:
Friday December 06, 2002 22:14:01 GMT
Comments:
I was diagnosed with appendiceal carcinoid in 1995, following extensive surgery. During a follow-up cat scan I was found to have renal cell carcinoma, and it was removed.
I have had regular check ups and nothing showed up until a mamogram 3 months ago, followed by a biopsy proved that the carcinoid has metastasized to the breast. Cat scans did not find any new tumors anywhere.. Thank God. We are a rare group! Most of my doctors have never seen anyone with carcinoid before! I enjoy reading of all your experiences.
Age:
66-79
Name:
Morgain
Email:
morgainbrit@hotmail.com
Location:
Victoria B.C Canada V8X 2K5
Date:
Friday December 06, 2002 17:37:17 GMT
Comments:
Hi Susan,
Bless you for your most informative web page.
I keep coming back to check on more of carcinoid sydrome.
I think so far what I am learning is, carcinoid syndrome is diffrent
(A little diffrent) from carcinoid tumor? Please correct me if I am
wrong?
Thanks for your web site
Morgain
Age:
40-45
Name:
Morgain Evans
Email:
morgainbrit@hotmail.com
Location:
Victoria B.C Canada V8X 2K5
Date:
Friday December 06, 2002 01:20:36 GMT
Comments:
I am so pleased I found this web site.
I just got a positive (through 24hr urine)carcinoid sydrome
86mg The next urine (24hr) came back 42mg? What does this mean?
I am 42yrs. My Mother also got this cancer at the same age.
What do I do next? Please Help. I have been unwell for a few years now.
I have All the symptons listed listed for carcinoid. What do I do next.
I am afraid my doctor will just send me way because the second test was condiderably lower than the first.
I look forward to hearing from you.
Morgain
Entry:
* * * PRIVATE ENTRY * * *
Name:
Dee
Email:
abco@global.net.au
Location:
Australia
Date:
Wednesday December 04, 2002 06:39:51 GMT
Comments:
My sister has been diagnosed with Carcinoid cancer just two weeks ago. (She is only 30) She started with pains in her stomach and it is only after several test to find out why that they discovered the tumors. She has several tumors in her liver. Carcinoid cancer is something I knew nothing about, thanks to your web page now at least I have a point of reference and I after reading your story I feel more positive that she will make it through. I thank you for your time and the effort that you have put into your research. I wish you all the best.
Regards
Dee
Age:
18-29
Name:
Eric J. Nichols
Email:
nichols_k@Hotmail.com
Location:
San Jose CA USA 95132
Date:
Monday December 02, 2002 05:02:49 GMT
Comments:
I've recently been diagnosed with Carcinoid Syndrome within the last 4 years; have had 2 major surgeries; am now taking Sandostatin LR injections monthly. I still show symptoms of carcinoid dispite my surgery 4.5 weeks ago. I'm reaching out to the internet to help better understand my disease and perhaps find a specialist on the west coast. Thank you for the information on your site. I am sure I will refer to it often.

- Eric
Referred By:
self
Age:
30-39
Name:
Pauline Kalagher
Email:
pikal@massed.net
Location:
Millbury MA USA 01527
Date:
Saturday November 30, 2002 16:33:53 GMT
Comments:
Breast Cancer Suriver
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Raymond Sponel
Email:
gschaefe@mail.win.org
Location:
Fort Smith AR USA 72903
Date:
Friday November 29, 2002 17:32:38 GMT
Comments:
I am writing for my step-brother in Arkansas. He has carcinoid tumors in his liver. Your site has been most helpful. Is there a website to locate the best doctors in his area? He seems to have 2 decent ones, but he would like a second opinion. Thanks, Glenda
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
mary pesha
Email:
pesha@usfamily.net
Location:
white bear lake MN usa 55110
Date:
Thursday November 28, 2002 02:53:23 GMT
Comments:
Hi Susan, my husband Pat died on Oct 1st, 2002. as I think I told the group.
I just want you to thank you for the help you gave us during his 5/1/2 years of this awful disease
Have a wonderful Thanksgiving. I miss Pat beyond words but I am thankful that he is no longer suffering from this cancer
Take Care and God bless you and all that suffer from this. Pat was only 53 when he died and we were cheated out of many more years together.
Mary Pesha
Referred By:
self
Age:
50-55
Name:
MARGARET OLINGER
Email:
WWW.S0PO2396@AOL.COM
Location:
EDWARDSBUEG MI USA 49112
Date:
Wednesday November 27, 2002 19:47:52 GMT
Comments:
HI SUSAN!WAS VERY HAPPY TO FIND YOUR SITE.WE DISCOVERED MY CARCINOIDS(SMALL INTESTINE AND LIVER) A MONTH AGO.HAVE TWO CONFLICTING TREATMENT OPTIONS AND AT A LOSS AS WHAT TO DO. THANK YOU SO MUCH FOR YOUR WORK. WILL READ MORE AND TRY TO DECIDE. OUR LOCAL ONCOLOGIST RECOMENDED SURGERY, BUT HAS ONLY SEEN TWO CARCINOID CASES AND REFERED US TO INDIANA UNIVERSITY HOSPITAL CANCER PAVILION IN INDY. THAT DOCTOR RECOMENDED A PASSIVE TREATMENT, SINCE I HAVE NO SYMPTOMS OTHER THEN OCCASIONAL STOMACH PAIN.HE SAID THEY BASE THEIR TREATMENT ON MAYO CLINIC STUDIES AND CASES. WILL STUDY MORE AND FIND ANOTHER DOCTOR FOR THIRD OPINION. I FEEL LUCKY SINCE I WAS DIOGNOSED QUICKLY COMPARE TO YOUR CASE.THANKS AGAIN,MARGARET
Referred By:
FOUND ON CHICAGO U.HOSPITAL WEB SITE
Age:
50-55
Name:
Sonja Nadeau
Email:
nadeaumf@chartered.net
Location:
Suffolk VA 23435
Date:
Sunday November 24, 2002 16:16:59 GMT
Comments:
I gave the wrong e-mail address prior, this is the correct one.
Referred By:
internet
Age:
46-49
Name:
Sonja Nadeau
Email:
nadeausr@chartered.net
Location:
Suffolk VA USA 23435
Date:
Sunday November 24, 2002 15:54:40 GMT
Comments:
I have just been diagnosed with Carcinoid Cancer and my husband and I have a lot to learn. We don't know where to start!
Age:
46-49
Name:
Rich Frisbie
Email:
jojoclayton@aol.com
Location:
Luther MI U.S.A. 49656
Date:
Sunday November 24, 2002 13:12:54 GMT
Comments:
Hi Susan, I was diagnosed with carcinoid in Oct 1994. Had a bowel resection and since it has spread to my liver and bones. I have radiation and chemoembolization when needed. I have a very positive attitude and just keep on keeping on. Its been quite an exciting experience. Rich
Age:
50-55
Name:
carol galloway
Email:
scmcgalloway@aol.com
Location:
indepedence KY usa 41051
Date:
Friday November 22, 2002 06:10:54 GMT
Comments:
My 9 yr old is exhibiting sweats,loud bowel sounds, abd pain and flushing if anyone knows a pediatric carcinoid specialist in cin area please let me know. I (her mother) have had symptoms for 10.5 yrs -a workup was done then and no diagnosis-I was told I had IBS and Stress causing symptoms and I foolishly quit pursing treatment 8 yrs ago as the doctors all thought I was a hypochondriac by this time. Thankyou for your time and prayers . Carol Galloway
Referred By:
self
Age:
30-39
Name:
Brian Leishman
Email:
sarahbrian@attbi.com
Location:
Ferndale WA USA 98248
Date:
Thursday November 21, 2002 23:09:20 GMT
Comments:
As a cancer patient, your best advocate is always yourself. It also helps to have a wife who really, really doesn't want you to die. Be proactive!
Referred By:
Carcinoid Cancer Foundation website
Age:
30-39
Name:
Natalie S. Hakanson
Email:
nanagnat@hotmail.com
Location:
Wells ME USA 04090
Date:
Thursday November 21, 2002 20:30:31 GMT
Comments:
An interesting and informative web page. I have enjoyed (?) caracinoid syndrome since Dec. 1988, and am just recently trying out the sandostatin treatment. It has seemed to work marvelously with the symptoms, and I am expecting great things. My original chemotherapy included adriamycin which can affect the heart, and I have recently been diagnosed with congestive heart failure. So I may be looking ahead to more problems. It was nice to read your story. Good wishes and blessings to you!












recently
Age:
66-79
Name:
JOE LYNAM
Email:
JWLYNAM@MSN.COM
Location:
Lakeland FL USA 33809
Date:
Sunday November 17, 2002 17:55:33 GMT
Comments:
YOUR STORY WAS SOME STATEMENT ABOUT DETERMINATION. GLAD YOU ARE BETTER TODAY. I ALSO HAVE BEEN MISDIAGNOSED FOR 8+ YEARS, ABNOMINAL PAIN I WAS TOLD WAS GASTRITIS. I WAS DIAGNOSED WITH CARCINOID OF THE PANCREAS AND MET TO THE LIVER IN APRIL 2002. STARTED ON SANDOSTATIN IN JULY. CAT SAN ON OCTOBER SHOWED STABILIZED TUMORS AND SOME SLIGHT SHRINKAGE...GOOD NEWS. MY TUMORS ARE KINDA LARGE 3.9 CM BUT I AM CURRENTLY PAIN FREE AND NO REAL SIDE EFFECTS FROM SANDO.

I PLAN ON ATTENDING A FUTURE GROUP SESSION AND HOPE TO MET YOU THEN. REGARDS, JOE LYNAM
Age:
50-55
Name:
Kathy Wright
Email:
WYHTAK@aol.com
Web Site:
http://none
Location:
Belen NM USA 87002
Date:
Sunday November 17, 2002 05:11:30 GMT
Comments:
Thank-you for providing all this information
Age:
50-55
Name:
DENNIS TIETZ
Email:
drtietz@netins.net
Location:
griswold IA USA 51535
Date:
Thursday November 14, 2002 20:58:25 GMT
Comments:
I have just been diagnosted as having carciniod syndrome
within the last two months. I found your web page and your story somewhere on the webb. I got my first injection of
sandsostain(is not spelled correctly)on nov.14,2002.
Age:
56-65
Name:
Eric Ashby
Email:
leashby@quickscrip.com
Location:
Chattanooga TN USA
Date:
Wednesday November 13, 2002 22:49:16 GMT
Comments:
I especially appreciate your links page. I have carcinoid liver mets.
Referred By:
google
Entry:
* * * PRIVATE ENTRY * * *
Name:
cynthia a. brown
Email:
redakcdog@yahoo.com
Web Site:
http://na
Location:
fredericksburg VA usa 22408
Date:
Tuesday November 12, 2002 04:28:16 GMT
Comments:
i emailed you on 11-10 2002 about husband getting reading to have chemoembolization at M.C.V. HOSPITAL in RICHMOND,VA. will be done on 11-19-2002,i'm very scared and he is too,can die from this procedure am told. hope it works for us reading your story pain,etc. i see every day with my husband .i've only had computer since 06-02 got to learn about his cancer, diganoised in 02-02,had abdomanal pain 2 yrs. lost 60 lbs. hope you are feeling well.look forward to hearing from you soon,he's having very foul breath he says coming from timor i don't know,too embarssed to ask dr. talk to you soon i hope.
Referred By:
found online husbund has carcinoid cancer gone to liver
Age:
50-55
Name:
Ronda Ray
Email:
r.ray@optusnet.com.au
Location:
Australia
Date:
Monday November 11, 2002 13:31:11 GMT
Comments:
Thankyou for your great information.I was recently operated on for a huge ovarian cyst (2.5 kilos about 5 pounds plus liquid)that was torsioned,incredible pain for days prior to emergency surgery.They took my left ovary but then found a 1.2cm growth on my appendix and removed it.Appendix was carcinoid.I will be having Octreotide Indium-111 as soon as it arrives from Holland in three weeks.Thankyou again,it makes such a difference knowing others are there,you have made me less scared.You are a very brave lady and I wish you well.Love Ronda.
Age:
40-45
Name:
Linda Dunnigan
Email:
dunnigan@uslink.net
Location:
Minto ND USA 58261
Date:
Sunday November 10, 2002 18:24:48 GMT
Comments:
Thank you for this web site. My husband has a Thymic Carcinoid, atypical. We have done well with it on
Sandostatin LAR 30mg and doing lots of antioxidents. He was diagnosed in 1999 and had a reoccurance in 2000 (removed) and again in Nov.2001. We started in the EPO 906 chemo study in October 2002. So far things are going pretty well. We are very encouraged as we did not even know this study was in the works 9 months ago. We are proof you can't give up. Like you said those who are aggressive do better then those who sit back and wait. We are very happy with our choices.
Age:
50-55
Name:
Tammy Powell
Email:
tammyd@intrstar.net
Location:
Clinton NC USA 28328
Date:
Saturday November 09, 2002 22:39:17 GMT
Comments:
My sister-in-law is 26 years old and was diagnosed with carcinoid of the liver in Oct, 2001. She has received chemo with little change. We were wondering if you know of an oncologolist in or near North Carolina that offers some of the treatments we have read so much about.
Age:
30-39
Name:
Barbara A. Tibbetts
Email:
Dick73@aol.com
Web Site:
http://None
Location:
Scarborough ME U.S.A. 04074
Date:
Saturday November 09, 2002 16:10:14 GMT
Comments:
thank you so much for taking the time to help with those like myself who NOTHING about this desease.
Referred By:
None
Age:
66-79
Entry:
* * * PRIVATE ENTRY * * *
Name:
Loyd Yarbrough
Email:
papaljy@aol.com
Location:
Byhalia MS USA 38611
Date:
Friday November 08, 2002 04:31:08 GMT
Comments:
Its been a while since I have visited your site. I like the new additions I see and the ones I got to read. Hope your teeth implants are going well. Your pictures posted from the April 2002 Tampa seminar are great.
Age:
56-65
Name:
JoAnn Carlson
Email:
JoAnn2@Backpackers.com
Location:
Everett WA 98208
Date:
Thursday November 07, 2002 16:59:34 GMT
Comments:
My carcinoid tumor was found on my liver in Jan/02. Primary hasn't been found yet. Found out Feb/02 that a possible cyst was found on my liver over 3 years ago and nothing was done about it and I wasn't informed of it. Been in a state of shock and on a spiritual quest since.
Age:
50-55
Name:
DEBBIE SLOAN
Email:
slo744@AOL.COM
Location:
LEXINGTON SC USA 29073
Date:
Tuesday November 05, 2002 17:23:52 GMT
Comments:
I FOUND YOUR SITE BY DOING RESEARCH ON THE INTERNET. WHAT A BLESSING. I HAVE KNOWN THAT I HAVE HAD CARCINOID FOR 14 YRS. ALTHOUGH THEY COULDN'T DIAGNOSE IT. WHAT A FRUSTRATION, AND I WOULD GO AWAY FEELING LIKE I WAS CRAZY. I AM AN RN AND VERY MUCH A PATIENT ADVOCATE AND WARRIOR, ALTHOUGH IT IS VERY DIFFICULT WHEN IT COMES TO YOURSELF. AT THIS TIME I HAVE HAD AN EXACERBATION OF SYMPTOMS, AND FINALLY SOME OF MY TESTS ARE STARTING TO SHOW US WHAT WE NEED. THANKS SO MUCH FOR THE INFO AND DOCTORS NAMES AND ADDRESSES, AND OTHER CONTACT RESOURCES. MY DOCTOR IS VERY RECEPTIVE, AND I WILL NOT STOP THIS TIME UNTIL SOMETHING IS RESOLVED TO MY SATISFACTION. I LOOK FORWARD TO HEARING FROM YOU AND ANY NEWUPDATES THAT YOU PUT ONLINE.
SINCERELY,
DEBBIE SLOAN
Age:
46-49
Entry:
* * * PRIVATE ENTRY * * *
Name:
JOHN PLANETS
Email:
john@planetworld.co.za
Location:
PRETORIA SOUTH AFRICA
Date:
Tuesday November 05, 2002 15:13:10 GMT
Comments:
VERY INFORMATIVE,INTERESTING,ENCOURAGING. CONFIRMA ONCE AGAIN, HOW PROACTIVE THE PATIENT MUST BE IN ORDER TO COMBAT ONE'S ILLNESS.
Age:
40-45
Name:
Amanda Gardner
Email:
mandian@agardner.freeserve.co.uk
Location:
Northampton England
Date:
Tuesday October 29, 2002 13:53:57 GMT
Comments:
I am currently undergoing tests - exhibiting most of signs of carcinoid syndrome. Found the site very useful, informative and optimistic so I will return to it while await diagnosis. Thank you.
Age:
46-49
Name:
barbara kimbrell
Email:
bjkim@cetlink.net
Location:
rock hill SC usa 29732
Date:
Tuesday October 22, 2002 17:48:00 GMT
Comments:
My husband has Carcinoid and I obtained a lot of info from your site..and your e-mails...but have not received any late...maybe my e-mail got deleted so please add back on
Age:
50-55
Name:
Jean Chu
Email:
jeanchu@eudoramail.com
Location:
Sydney Australia
Date:
Monday October 21, 2002 05:59:15 GMT
Comments:
Thanks for all the info and reference. Do you know the alternative for Chromogranin A tests? None of the pathologist perform it in Australia. My husband had the primary in pancreas removed 3 years ago and Octreoscan 3 months ago show growth in lungs and liver. But it is not feasible to have the scan too often. He does have NSE and the other tests done.
Age:
40-45
Name:
Jill Hansen
Email:
cybu@aol.com
Location:
Ames IA USA 50010
Date:
Sunday October 20, 2002 05:42:07 GMT
Comments:
I lost my mom at the age of 59 in June 1999. She had carcinoid cancer of the small bowel and then liver. We doctored at the Mayo Clinic in Rochester, MN.
Age:
30-39
Name:
S. Holzberger
Email:
lasher10@earthlink.net
Location:
CA
Date:
Monday October 14, 2002 02:05:05 GMT
Comments:
Your website is a wonderful source of info! My mother in law has just been diagnosed & has been told to go home & call when she starts having symtoms-"wait and see"- We aren't satisfied & are looking for help everywhere. Thanks
Age:
30-39
Name:
Judy V. Weavil
Email:
jvweavil@aol.com
Location:
Kernersville NC USA 27284
Date:
Saturday October 12, 2002 15:53:59 GMT
Comments:
My husband, Norris(Woody)was just diagnosed 10/1 with carcinoid following a liver biopsy. We just visited the oncologist this past Thursday and she has started us on a battery of tests and scans. We are both still in shock over this diagosis and are very overwhelmed by this unusual malignancy. However, after visiting your web site, I do feel hopeful and convinced that we do have options. Thank you so much for sharing you experiences. I know we will be visiting your web page routinely for information and encouragement. God bless you.
Judy Weavil
Referred By:
Dr. Judy Hopkins, Oncologist
Age:
56-65
Name:
Rebecca McClain
Email:
McClainRE@INPO.org
Location:
Atlanta USA 30330
Date:
Friday October 11, 2002 17:26:31 GMT
Comments:
My sister who is 57 years old has just been diagnoised with carcinoid cancer of the pancreas. Her doctor told her that there has only been 74 cases of this type of cancer in the pancreas in the US. I have found your story very interesting. How do we go about finding an oncologist who is best suited to help her when there is so little information on this type of cancer. She had her surgery at Emory Hosital to remove the tumors (3) on September 5. To date she still has a jade tube and a feeding tub.
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
Carly
Email:
carls_1985@hotmail.com
Location:
Australia
Date:
Wednesday October 09, 2002 09:42:12 GMT
Comments:
My Dad has carcinoid cancer and I found your website helpful in understanding more about it. Thanks Susan :)
Referred By:
Search Engine
Age:
Under 18
Name:
frank binks
Email:
amy@binks2954.freeserve.co.uk
Location:
Sheffield,England England
Date:
Thursday October 03, 2002 13:50:36 GMT
Comments:
In July of 2002 I had a typical carsanoid tumer removed from my left lung.I am now recovering and trying to get back into work again after spending 6 months off.Before this I had no idea such a condition existed.I found this website particularly interesting and could'nt resest signing the guest book.Wishing you and everyone with carsanoid cancer all the very best.Frank
Age:
30-39
Name:
Elizabeth D. Storie
Email:
dqstorie@aol.com
Location:
Harker Heights TX USA 76548
Date:
Tuesday October 01, 2002 20:48:45 GMT
Comments:
a ray of sunshine.... thanks
Age:
66-79
Name:
Carole Gardner
Email:
feelikanut@cybrtyme.com
Location:
Gadsden AL USA 35903
Date:
Tuesday October 01, 2002 09:56:40 GMT
Comments:
Very informative web site, thank you for your dedication. I have a very good friend that was diagnosed with Carcinoid cancer earlier this year. I want to learn as much as possible so I can provide the type of support she needs as she goes through treatment, symptoms, doctors, etc. I want to be a 'positive' part of her life, but to do that i need to understand and become more familiar with her diagnosis and treatment. Thank you again for all the wonderful information!!!! Good Luck to you :-)
Age:
30-39
Name:
Anne Smith
Email:
AFSCLS@AOL.COM
Location:
Charleston SC USA 29407
Date:
Saturday September 28, 2002 06:33:49 GMT
Comments:
Thanks -this web site has been a great source of information. Feel more informed when talking with medical providers about 69 yr old husband's carcinoid diagnosis. Initially, "same old story of years of misdiagnoised abdominal pain". Now on Sandosatin monthly and doing well. You have been a GREAT INSPIATION. Thanks again for website.
Referred By:
self
Age:
66-79
Name:
Steve Burris
Email:
steve.burris@goodrich.com
Location:
Anthem AZ USA 85086
Date:
Thursday September 26, 2002 02:58:31 GMT
Comments:
My wife is curently in John C Lincoln awaiting for Path. results for what we believe is a carcinoid just removed from her colon and bowell. We are scared but must move on. Thank you for having this site.
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
skipper williams
Email:
sbw1952@aol.com
Location:
covington VA usa 24426
Date:
Wednesday September 25, 2002 22:35:38 GMT
Comments:
i haven't got to read all the things on your page.as a matter of fact i am a very slow reader.they found some tumors on my liver in sept 2000. they haven't really done much.it is starting to take a toll on my mind. i'll try to read more every day. i am on sandastatin . just had a scan done in januray and than one two weeks ago. the tumor has gone from 5cm to 5.5 cm.hopely they will try something else. it is so hard to try not to worry. you are doing a great thing. GOD bless you. skipper
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
Rick Heisey
Email:
rmheisey@yahoo.com
Location:
Bel Air MD USA 21014
Date:
Wednesday September 25, 2002 22:09:50 GMT
Comments:
Thanks for taking the time to have this site. My dad has spent many hours research Mom's cancer situation and has found helpful information on your site. She must go through another operation this November 11, 2002 to remover her spleen and section the liver. Very hopeful at this time! Son, Rick
Referred By:
Doug Heisey - Dad
Age:
50-55
Name:
Ty Kruk
Email:
tykruk@yahoo.com
Location:
Statesboro GA USA 30461
Date:
Tuesday September 24, 2002 19:12:09 GMT
Comments:
Just had a cousin diagnosed with neuro-endocine tumors and was gathering some information when I saw your site mentioned. As comprehensive a list of resources as I could find. Many thanks for your efforts and positive attitude.
Age:
46-49
Name:
Joanne Larkin
Email:
larkin@goes.com
Location:
Long Valley NJ USA 07853
Date:
Monday September 23, 2002 10:59:03 GMT
Comments:
I have been recently diagnosed with neuro-endocrine tumors of the "bland" type. I have no symptoms. Your web-site is a wealth of information and is helping me understand as well as cope with what is happening. Thank you for your research and dedication.
Referred By:
Internet
Age:
50-55
Name:
Graham Stanley
Email:
graham@activity-toys.com
Web Site:
http://www.activity-toys.com
Location:
Coventry England CV6 2AJ
Date:
Saturday September 21, 2002 21:53:33 GMT
Comments:
Susan, thanks for all your research, and being kind enough to publish it for us all to share on the WWW. My father (74)has recently been diagnosed with Carciniod, and the information you have given us access to is going to be a great help.
Referred By:
Searching the web (mostly by my wife Judith)
Age:
46-49
Name:
Ann
Email:
annmelusa@yahoo.com
Location:
Vero Beach FL 32966
Date:
Friday September 20, 2002 10:00:44 GMT
Comments:
My closest friend in Australia was diagnosed about a year ago with metastatic carcinoid cancer. I have been searching for any means possible to help her in her struggle. I accidentally found your site. Would it be rude of me to ask you if you are a Christian? My friend is very strong in her faith and I know it would benefit her to hear from another Christian who can empathise with her situation. Please email me if you think you could be such a person!
Name:
Linda Robinson
Email:
markandlinda@peoplepc.com
Location:
Farmington Hills MI USA 48331
Date:
Saturday September 14, 2002 02:45:05 GMT
Comments:
My mom was just diagnosed with this type of cancer, so we are just beginning our journey of discovery. I will be sure to bookmark this website, I'm sure it will be useful to us in the coming months. Thanks for taking the time to maintain it.
Referred By:
carcinoid.org
Age:
30-39
Name:
Denise L. Heryford
Email:
dlh1957@hotmail.com
Location:
Yelm WA USA 98597
Date:
Friday September 13, 2002 19:29:15 GMT
Comments:
Do you know if carcinoids tend to be hereditary or not? My father has a carcinoid tumor diagnosed about 5 years ago. Now I am have some abdominal pain, diarrhea at times and intermittent flushes.
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
Doug Heisey
Email:
Dougheisey@aol.com
Location:
Timonium MD United States 21093
Date:
Tuesday September 10, 2002 03:29:49 GMT
Comments:
My wife was diagnosed with carcinoid in 1989 after 9 months of searching and the removal of her gall bladder. It was discovered accidently(small intestine) by her gall bladder surgeon at the 6 week check up. Since then she has had a tumor on her liver (nine years)and more recently on her spleen. She has been on sandostatin LAR 30mg for about four years and now it is not controlling the symptomsas well. We have been told by a liver surgeon that he can remove the liver tumor and also the spleen. We were hoping for something less. We are looking at other options at this time (chemo, ablation, rf, cryo, etc.) We will be making a decision soon on which direction to take. By the way she also had breast cancer surgery this year with 33 days of radiation.
Referred By:
Internet
Age:
66-79
Name:
Alyce Smith
Email:
normaly@wmconnect.com
Location:
Sacramento CA Sacramento 95624
Date:
Tuesday September 03, 2002 00:12:25 GMT
Comments:
Hellow, Susan, I'm very nervous. I'm a very basic user of the computer and internet in particular - - mostly E-mail to friends & family and microsoft word. I was diagnosed with Carcinoid June '97. I'll tell you my story later if you'd like and I do have questions, but right now I'm running out of time. There is so much info here I don't know where to start. I don't understand what the "Carcinoid List" is, how to use it, or even if I want to use it. I read your story and have much admiration for your ability to handle your Carcinoid. Thank you, Alyce
Referred By:
Daughter, who found you on the internet
Age:
66-79
Entry:
* * * PRIVATE ENTRY * * *
Name:
Suzanne S. Kehoe
Email:
skehoe@wave.net
Location:
Brookings OR usa 97415
Date:
Friday August 30, 2002 23:42:21 GMT
Comments:
I would love to see a list of specialists in carcinoid syndrome. My oncologist has seen only 5 in her career, and while she is sharp, I am sure she could use some help, as could I. Thanks
Referred By:
Pat Silveria
Age:
66-79
Name:
Wanda Miller
Email:
millerwk@knology.net
Location:
Huntsville AL USA 35824
Date:
Thursday August 29, 2002 00:25:14 GMT
Comments:
My brother, who has carcinoid, told me of your site and sends me a lot of your information. I find your story very interesting. Not only my brother has carcinoid, but our sister died of carcinoid 3 years ago. I have the urine test done each year and don't know of much more to be doing now. I know it is rare to have two people in the same family.

My prayers are with you.

God bless you.
Wanda Miller
Referred By:
John Wilbanks (Birmingham, AL)
Age:
56-65
Name:
Yvon Dupaul
Email:
yvonld@aol.com
Location:
Miami FL USA 33015
Date:
Wednesday August 28, 2002 21:47:46 GMT
Comments:
Just informed 1 hour ago that I have been diagnosed with carcinoid syndrome [malignant] of the duodenum. I have to see another specialist next week to discuss treatment. I would love any comments and recommendations. I am in state of "shock" now.
Age:
66-79
Name:
Yvon Dupaul
Email:
yvonld@aol.com
Location:
Miami FL USA 33015
Date:
Wednesday August 28, 2002 21:45:03 GMT
Comments:
Just informed 1 hour ago that I have been diagnosed with c
Age:
66-79
Name:
Yvon Dupaul
Email:
yvonld@aol.com
Location:
Miami FL USA 33015
Date:
Wednesday August 28, 2002 21:44:59 GMT
Comments:
Just informed 1 hour ago that I have been diagnosed with c
Age:
66-79
Name:
Loyd Yarbrough
Email:
PapaLJY@AOL.com
Location:
Byhalia MN USA 38611
Date:
Wednesday August 28, 2002 03:39:57 GMT
Comments:
Hello Susan! Hope you are doing well. I am as far as I know. Will return to Tampa 10/14/02 for an MRI and other tests by Dr. Kvols.
Age:
56-65
Name:
Mabel Rose
Email:
RosebudIII97@aol.com
Location:
WV USA 25081
Date:
Saturday August 24, 2002 20:48:40 GMT
Comments:
I have a best friend that had a carcinoid on her liver and had surgery 3 months ago. She is still not feeling well but has had every test imaginable and thank God they have not found any other cancer. She still has some pain and complains of being sore alot. I printed your story for her to read. We had never heard of carcinoids before so I think it may help her to know there are others out there. Her brother-in-law is a quite notable heart doctor anfd he had old her not to worry about her pain. I think sometimes esp. men doctors tend to not take women serious when they complain about pain. Thank you and good luck to you. Mabel Rose
Age:
40-45
Name:
Rhonda Good
Email:
rmgood2001@yahoo.com
Location:
Cameron NC USA 28326
Date:
Friday August 23, 2002 19:29:14 GMT
Comments:
I was diagnosed with carcinoid cancer in June 2000 and surgeon performed a whipple procedure (I was in the hospital for 30 days). I have since had 3 embolizations and a radio frequency ablasion. All of my tumors seem to be in the liver so far. I have never had any type of treatments other than the embolizations and ablasion and my previous and current oncologist seem to be of the "let's wait and see variety". I was wondering if you knew of any carcinoid experts in the North Carolina area.
Referred By:
myself
Age:
30-39
Name:
Rosa Cromwell
Email:
rosacromwell@hotmail.com
Location:
Sandy Spring MD USA
Date:
Friday August 23, 2002 02:35:39 GMT
Comments:
I would like to receive your newsletter.
Age:
50-55
Name:
kathy taylor
Email:
katay316@yahoo.com
Location:
port charlotte FL u.s. 33952
Date:
Friday August 23, 2002 02:35:25 GMT
Comments:
i was diagnosed with carcinoid in 2000 went to the sarasota conference i was misdiagnosed for 2 years i was told i had diverticulitis and panic attacks and literally was told to leave the emergency room because it was in my head finally went in to take out infection and their wasnt any it was carcinoid i was wondering if you have heard of any one having severe panic attacks from carcinoid as they disappeared when they took out tumer but are starting to come back im also starting to have heart problems and very high triglyceride 527 cholesterol 229 levels abnormal stress test and nobody seems to be listening again am very interested to know if any one has experienced panic attacks as related to carcinoid thank you kathy taylor
Age:
46-49
Name:
Steve Vail
Email:
stevemvail@cs.com
Location:
Rockwall TX USA 75032
Date:
Sunday August 04, 2002 14:22:50 GMT
Comments:
My, yours is quite a saga! It makes me feel very fortunate to have been diagnosed with carcinoid relatively early, and Sando treatments begun in very short order.

Thanks very much for your prodigious efforts. You are a true inspiration.

Steve Vail
Rockwall, Texas
Referred By:
Dawn
Age:
56-65
Name:
Terri Kraham
Email:
crafttmom@aol.com
Location:
Wildwood MO USA 63005
Date:
Tuesday July 30, 2002 15:20:17 GMT
Comments:
Susan-
I go to this site and to your story every so often. As you know my Mom died of this horrible disease in September of 2001. I guess I just wanted to say thank you again for all that you did for her, she regarded you so highly and spoke of you often. I also want to say thank you to you for all the support you have given me. You are truly a remarkable woman and your story gives me hope that someday this disease will be beaten. You are an inspiration to me. I hope that if our move goes well and we wind up in AZ, I will finally get to meet the woman that gives hope to so many. God Bless you, and thank you again.
Terri (Dee's daughter)
Referred By:
my Mom
Age:
30-39
Name:
Shayla Kinlock
Email:
kinlocks@esi.com
Location:
Scappoose OR USA 97056
Date:
Saturday July 27, 2002 00:38:08 GMT
Comments:
My mother was just diagnosed today with Carcinoid Cancer in her liver/spine, she meets with an oncologist August 1st so we are just starting to find out about this cancer.. your website was the first I found and it has given me hope reading from what others have said. I wish everyone the best and God Bless you all, thank you for the comfort you have provided me today!
Referred By:
searching web
Age:
18-29
Name:
Elisabeth McHugh
Email:
mchughgang@earthlink.net
Location:
McGuire AFB NJ USA 08641
Date:
Wednesday July 24, 2002 14:05:07 GMT
Comments:
Hi Susan.....
My Uncle referred me to your site after he was diagnosed with carcinoid of the lung. My father (71)was recently diagnosed with metastatic carcinoids throughout his entire abdominal cavity (rice sized tumors). His Dr. told him that there was no chemo available and they were going to take a wait and see approach....sound familiar??? Was glad to find your site to be able to give my father information, so he can either inform his doctor or find a new one. Thank you for putting your suffering and illness to a good purpose by creating your website for the rest of us!!! I believe the God has a purpose for everything, it's just that sometimes we miss the opportunity for that purpose. Glad to see that you didn't!!!!
God Bless you,
Elisabeth McHugh
Referred By:
John Weiss
Age:
40-45
Name:
Lydia
Email:
TruGrits150@aol.com
Location:
CA
Date:
Sunday July 21, 2002 20:46:42 GMT
Comments:
Enjoyed reading your article, my husband was diagnosed Dec.3,'01 with pancreatic Carcinoid Cancer, a 4cm tumor in his pancreatic duct,surgeon did a by pass around confirming Carcinoid, he is seeing a local (thru HMO ) Oncologist that is doing nothing, but request blood test every 2 months,all of my husbands blood test and the one 24 Hr urine test, came back negative- should he be taking that Sandostatin or LAR injections? any advise will be greatly appreciated,Susan. Respectfully-Lydia
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
Mavis Bond
Email:
mavis.bond@btinternet.com.uk
Location:
Lancaster UK England LA6 1JP
Date:
Monday July 15, 2002 19:09:20 GMT
Comments:
Susan, I feel guilty that I read and reread your page last year but did not leave a message. I was so busy trying to find out all I could when my husband Mike was diagnosed and your site was a lifeline in very choppy waters.
We were given no hope and told carcinoid tumours did not respond to treatment. Your page gave us the courage and the knowledge to search until we found an endocrine tumour specialst. Mike is now receiving the best of treatment and I hope will live until a cure is found.........or until he is a very old man!
My warmest thanks to you, Sunny Susan in Arizona where the sun seems to shine for ever!!! You ceratinly brought sunshine back into our lives, even in the rainy NW of UK.
Kind Regards
Mavis Bond
Referred By:
Carcinoid research
Age:
56-65
Name:
Deborah Simon
Email:
dsimon@firstclearing.com
Web Site:
http://none
Location:
Mechanicsville VA US 23111
Date:
Monday July 15, 2002 19:06:16 GMT
Comments:
My mom was diagnosed with Carcinoid cancer in Oct. 2001. I'm not thrilled with the treatment offered by her oncologist (Dr. Shaw with MCV). She is doing Sandostatin im injections once a month and is having severe pain/abdominal cramping. I want to help her find a way out of her pain.
She's an angel!
Referred By:
a friend
Age:
30-39
Name:
Pamela Hailey
Email:
phailey@amfreece.com
Location:
Mechanicsville VA USA 23111
Date:
Friday July 12, 2002 20:32:27 GMT
Comments:
I found a link to your wonderful web page while ordering a book called Rollercoaster by Wayne Tefs. My mother-in-law (57 years old) was diagnosed with Carcinoid in October of 2001. She currently receives monthly injections of octreotide (sandostatin) but still suffers with pain/cramping and some diahrreah (of recent). Thank you so much for your informational web page. I feel my mother-in-law needs a support group and I am hoping that I will be able to talk her into emailing you. You're a true blessing. I plan on telling the entire family about this website. I believe it will be useful for each of us. Thanks again.
Pam Hailey
Age:
30-39
Name:
Patricia A. Smith
Email:
patricia_s32606@yahoo.com
Location:
Gainesville FL USA 32606
Date:
Wednesday July 10, 2002 21:44:12 GMT
Comments:
Reading your story has helped me very much....I do not feel hopeless now. I was recently diagnosed with Carcinoid Tumors and have a scheduled body scan coming up in 12 days. I live in Gainesville, Florida and will be going to a place called Shands here.
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Lauren Brooks
Email:
lauren.brooks@noble.net
Location:
Chicago IL USA 60614
Date:
Wednesday July 10, 2002 16:53:59 GMT
Comments:
Hi, Susan! I found your site very helpful, and thought I'd contact you on behalf of my parents. My dad has recently been diagnosed with carcinoid cancer, discovered after he developed a blood clot in his leg. My parents feel that the doctors aren't being very forthcoming with information. Thanks to your site, we've decided to get in touch with Dr. Warner. My parents are also interested in joining a support group. Any information you could give them on doctors, etc. would be greatly appreciated! I hope you're doing well and are having a nice summer, too.

Lauren Brooks
Referred By:
web surfing
Age:
30-39
Entry:
* * * PRIVATE ENTRY * * *
Name:
Lisa Gable
Email:
lisag@chisp.net
Location:
Denver CO USA 80017
Date:
Sunday June 30, 2002 05:35:40 GMT
Comments:
I have been having stomach problems for about 5 years. Ulcers that would not heal requiring partial gasrectomy and then Roux En Wye 2 years later. Still have abdominal pain, constant that gets severe periodically. Through the testing on the stomach there have been "Lesions" noticed on ovary, liver and kidneys. I am having a 5HIAA done right now. My gastroenterologist wants to rule out carcinoid. On a whole, the only symptom I have not had was the diareha, I think mainly because of the pain meds and ulcer meds. It would be a relief, in a way, to have a positive diagnosis, only in that I would finally have some answers to years of abdominal pain and problems. Seeing the long road that you have been on with this, I just hope and pray that if the diagnosis is positive that I have the strength and fortitude that you have shown.
Age:
40-45
Name:
Holli Daniel
Email:
hadagain@hotmail.com
Location:
cold spring MN usa 56320
Date:
Wednesday June 26, 2002 04:24:58 GMT
Comments:
I found your sight very helpful. I have been so very frustrated and told as you were it is nothing. I did have one PA suggest Carcinoid but not much else done. FRUSTRATED!
Referred By:
self on internet
Age:
40-45
Name:
Rev. Edward Martin Boussaard
Email:
dutchrev@theramp.net
Web Site:
http://n/a
Location:
Lewistown IL USA 61542
Date:
Tuesday June 25, 2002 05:12:40 GMT
Comments:
Susan
I admire your work provided to all of us
it is remarkable and amazing what all you have studied.
It has helped me finding things I did not know and saved
me a lot of research time.
Thanks so much I will go through this several times.
Your heart si big to do this .
May the Lord bless you and keep you among us forever.
Ed
Referred By:
you
Age:
50-55
Name:
Vicki R Irving
Email:
vicki.irving@imagesoncall.com
Location:
Denton TX USA 76210
Date:
Monday June 24, 2002 20:05:06 GMT
Comments:
I emailed Dawn Decker about the TX support group and she must have forwarded on to you. I was very happy to get your response and read your carcinoid story. I have had carcinoid since 1985 Dx in 1990. Thank YOu Vicki
Age:
50-55
Name:
Susan Czarnecki
Email:
Jldm@aol.com
Location:
Beverly MA U.S.A. 01915
Date:
Wednesday June 19, 2002 18:28:00 GMT
Comments:
Susan, I am so in awe of you! My husband found you while I was hospitalized in April. Had a bowel resection for what was thought to be crohn's, but was a 2cm tumor with 5 pos lymph nodes. My husband thought he was reading my story, not yours. I am very thankful you created this site. Fatigue & discomf in my rib cage are main complaint now, they say I'm o.k. and will be followed by my surgeon every 6 mos. I'm not sure that's o.k., but so thankful to know what was wrong and thankful for my family, I'm reading your site and educating myself for now. Again, THANK YOU- THANK YOU-THANK YOU!!
Referred By:
My husband
Age:
56-65
Name:
Shari Prager
Email:
shari101@hotmail.com
Location:
Greenville OH USA 45331
Date:
Monday June 17, 2002 20:01:29 GMT
Comments:
My friend, Steve, has just been diagnosed. We meet with the oncologist for the 1st time tomorrow 6/18/02. Pray for him.

Great Site, Susan!
Referred By:
search
Age:
30-39
Name:
Margaret P. Smith
Email:
maggypaul@earthlink.net
Location:
Charlottesville VA USA 22903
Date:
Tuesday June 11, 2002 02:21:42 GMT
Comments:
I have Cushing's Disease from ectopic masses on the tail of the pancreas and under the submucosal lining of the area where the duodenum and jejunum meet. I am now seeking treatment at the University of Virginia Medical Center. I'm so tired of the stomach and back pain, the flushing, the nausea, the edema in my feet and ankles, the regurgitating, the "irritable bowel syndrome," the dizzy spells, loss of concentration, weakness, and fatigue, mouth sores, sore throat, migraines... it goes on and on. I am grateful to have found your website. Thank you so much!
Referred By:
DeeDeeMC
Age:
40-45
Name:
Esther Hinkes
Email:
Datahnk@aol.com
Location:
Albuquerque NM USA 87110
Date:
Saturday June 08, 2002 05:26:04 GMT
Comments:
WILL FOLLOW WHEN MORE INFO AVAILABLE FROM AFIP
Age:
80 and over
Entry:
* * * PRIVATE ENTRY * * *
Name:
Susan Stewart-Britt
Email:
jsec@cimtel.net
Location:
pawnee OK U.S.A. 74058
Date:
Wednesday June 05, 2002 20:51:15 GMT
Comments:
Susan, My mother was diagnosed with a carcinoid tumor yesterday. The Dr. gave us absolutely no information about this. We are all frightened and in the dark any information, advice or just words of wisdom would be appreciated from you. Thank you Susan Stewart-Britt
Age:
30-39
Entry:
* * * PRIVATE ENTRY * * *
Name:
Brian Cheng
Email:
brianc@us.ibm.com
Location:
Tucson AZ USA 85749
Date:
Monday June 03, 2002 02:13:56 GMT
Comments:
Susan, I apologize! Once I sent my previous note to you, I realized I gave you the wrong email address. The right one is attached. brianc@us.ibm.com
Entry:
* * * PRIVATE ENTRY * * *
Name:
Brian Cheng
Email:
brianc@us.ibm.ocm
Location:
Tucson AZ USA 85749
Date:
Monday June 03, 2002 02:11:56 GMT
Comments:
Hi Susan, what a wonderful website and what a wonderful person you are. You are an inspiration to all! I have some questions for you. The flushing which you described, was it constant (i.e) how often did you have it? And did it always involve your face, neck, chest, and arms? Did it come on during different times of the day and different activities? Did you always have "sweating" episodes with it? Is this common? And how long did you have the symtoms? I have some flushing on my face and have had more bowel movements than normal lately. Both events are unexplained. I was trying to do some research on the internet when I found your site. I am wondering if I have Carcinoid or not? Thanks so much in advance for your help!
Entry:
* * * PRIVATE ENTRY * * *
Name:
Taffy Daussin
Email:
taffyd@sbcglobal.net
Location:
Houston TX USA 77401
Date:
Monday June 03, 2002 01:22:41 GMT
Comments:
My 14 year old daughter is "highly suspected" of having carcinoid tumors. We are awaiting definite confirmation from blood and urine tests. She has a list of symptoms and has had numerous tests and imaging procedures done, but no tumors have been located yet. I feel lucky that she has possibly been diagnosed so early, but find very little info on this disease in adolescents. PLEASE share any information or personal experiences you may have had with this rare disease in a child, adolescent or even a young adult. Thanks and God bless you and your families as you fight this silent killer.
Referred By:
Carcinoid Cancer Foundation Website
Age:
Under 18
Name:
Pat Anderson
Email:
patanderson@justice.com
Location:
Bosque Farms NM
Date:
Monday May 27, 2002 12:11:20 GMT
Comments:
Very impressive site! And I would say that even if I wasn't a relative. Love from Pat in New Mexico
Name:
Diana Sheffer
Email:
dbsheffer@aol.com
Location:
Plantation FL US 33317
Date:
Saturday May 25, 2002 09:44:07 GMT
Comments:
I am glad that I discovered your web site. It has given me some useful information. Thank you.
Age:
30-39
Name:
Joan Smart
Email:
smartj@telusplanet.net
Location:
Calgary, Alberta, Canada Canada
Date:
Tuesday May 21, 2002 05:33:02 GMT
Comments:
Hi there,
My husband was diagnosed with Carcinoid tumours July of 94 and had a second intestinal surgery in Jan. of 97. In Sept. of 2001, his 5HIAA test was high again, and subsequent ctscan showed tumours (2 or 3) in his liver, a follow up MRI in February showed his liver to be full of tumours, and they told us that surgery was no longer an option. We await results of his April MRI and MIBG). We were supposed to have an appointment on May 14 - but the doctor was unavailable, so our appointment was rescheduled to June 11. The waiting is so hard! I'd write about his personal treatment plan, but there's not enough space. Email me if you are interested in talking
Regards,
Joan
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
Nelda Fritcher
Email:
bfritcher@aol.com
Location:
Granbury TX USA 76049
Date:
Tuesday May 21, 2002 02:11:09 GMT
Comments:
Susan,
I hadn't read your web page in a long time, so I just browsed throught it again. It's such a marvelous work of
communication.
Nelda in Texas
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Dorothy Kopel
Email:
kopel@webster.ac.at
Location:
Vienna Austria
Date:
Sunday May 12, 2002 12:48:24 GMT
Comments:
I appreciate your site. We are still in the "shock phase" - we just learned of my mother-in-law's advanced carcinoid cancer recently - but I am sure I will refer to your page and the links often in the future as we all try to deal with this. God bless you. Dorothy Kopel
Referred By:
google.com
Age:
30-39
Entry:
* * * PRIVATE ENTRY * * *
Name:
Anni
Email:
avcbeach@earthlink.net
Date:
Saturday May 11, 2002 03:28:41 GMT
Comments:
Hi susan, Thanks for linking up Jam Pak. That's really neat!
Referred By:
Susan
Name:
Cheryl Radtke
Email:
clradtke@msn.com
Location:
Crestwood IL USA 60445
Date:
Tuesday May 07, 2002 17:41:06 GMT
Comments:
I found your website through my pursuit of information in respect to Carcinoid. Denny, the love of my life, was diagnosed with Carcinoid of the small intestine (inoperable) about a month ago. The information on your site and the links you recommend are going to his oncologist. Don't get me wrong, his surgeon and oncologist have been the greatest, but any additional info I can provide to help them help us is well worth it. They have already begun treatment with Sandostatin. Thank you for sharing your story and thoughts, but mostly the wealth of information you have found and are sharing with so many. Your an angel.

P.S. Would love to hear from anyone in the Chicagoland area. Please don't hesitate to drop an email. I can always use a shoulder.
Age:
46-49
Name:
Paula Salazar
Email:
cozycat8@msn.com
Location:
Maricopa CA U.S.A. 93252
Date:
Saturday May 04, 2002 19:45:57 GMT
Comments:
My 12 yr old daughter was diagnosed with a carcinoid tumor after an appendectomy on 3/26/02. We are still waiting for test results to see if it has spread. Her doctor is opptomistic, but we are still very scared. I want to thank you for your web site. I am still trying to find all the information I can about carcinoid tumors. They said her tumor was a stage II. I am not sure what that means.
Referred By:
carcinoid foundation
Age:
30-39
Name:
Sue Harnas
Email:
susieq924@yahoo.com
Location:
Adams NY USA 13605
Date:
Thursday May 02, 2002 14:56:05 GMT
Comments:
I just came across your web page.This is wonderful
I was diagnosed with carcinoid 2 yrs ago.Now I am supposed
to start the liver embolization.I was so scared but reading
your web page has helped me a lot. Thank you
Referred By:
Doctor
Age:
66-79
Name:
Lorie
Email:
wor25@hotmail.com
Location:
Nova Scotia Canada
Date:
Tuesday April 23, 2002 16:45:41 GMT
Comments:
Just thought I would like to say WOW, keep up the spirit. Seems like every third person I know has one type of cancer or another, and sometimes it can be so hard to deal with. Good to see that you have what it takes to make it through.... Cheers to you.
Referred By:
search engine

Name:
Lena
Email:
freespirit@telia.com
Location:
Sweden
Date:
Tuesday March 26, 2002 18:50:54 GMT
Comments:
Dear Susan
Thank you for your work making this page!
I visit often to help myself and have had very good
information!
I have an endocrine pancreas tumor.
I would like to know if anyone knows if someone have been
cured by taking Introna(alfa-interferon) and Sandostatin
injections!? I hope so!
Age:
40-45
Name:
Dianna Francis
Email:
chana.ashayra@cox.net
Location:
San Diego CA 91910
Date:
Tuesday March 26, 2002 16:49:48 GMT
Comments:
Hello, I have tried to send a message about my situation but it's too long for your guestbook. I just had an 8 cm struma ovarii carcinoid removed. There is a long story with that. I need referrals to an oncologist regarding chemo that I believe I need based on research. My surgeon dismissed me, long story. I'm hoping we can talk. This is my second such tumor. My statistical chances for survival without chemo are very poor. Please contact me chana.ashayra@cox.net. I'm a RN, and not passive either. Yet I can't get my medical needs met. Maybe you know someone I can try. I've exhausted my area. Thank you! Dianna Francis
Age:
30-39
Entry:
* * * PRIVATE ENTRY * * *
Name:
Bobbi Jordan
Email:
pysicomom@rrt.net
Web Site:
http://www.geocities.com/pysicomom/homepage.html
Location:
Hankinson ND USA 58041
Date:
Sunday March 24, 2002 17:24:11 GMT
Comments:
<center><a href="http://theraokgroup.com">
<img src="http://raokgroup.com/GiftShop/3c.jpg" alt="Random Acts of Kindness" border="0"></a></center>
I have enjoyed visiting your sight. I was not aware of alot of things. I enjoyed the information very much. Thank you.
Referred By:
search engine
Age:
18-29
Name:
becky ott
Email:
keo12.tn#@netzero.net
Location:
chattanooga TN usa 37419
Date:
Saturday March 23, 2002 17:57:37 GMT
Comments:
hello, my father in law has carcinoid. he was diagnosed 1985. it is exciting to find others at this website since there seems to be so few people who have knowledge on this illness. if you have any new info on research or anything please email me. thank you, becky
Referred By:
search engine
Age:
30-39
Name:
Karen and James Jeralds
Email:
jjeralds@bellsouth.net
Location:
Wilmington NC United States 28409
Date:
Saturday March 23, 2002 03:24:43 GMT
Comments:
We have found your site and your wealth of information to be very helpful. Yours was one of the first sites that we found as we started this journey.
Age:
46-49
Name:
Bergen Williams
Email:
bergen@scientainment.com
Location:
Hollywood CA usa 90046
Date:
Thursday March 21, 2002 06:16:25 GMT
Comments:
Hi, I have been diagnosed with Carcinoid Cancer 3 weeks ago and my doctors are very aggressive about doing surgery even though they cannot determine where the tumors exactly are. I have been having a hard time determining my best course of action and don't know about having the surgery. I have not been given any meds yet or any diet info or anything. They want to cut me open on the 11th of April for massive exploratory and I am a bit wary. Reading your site has helped a bit but still, I am uncertain. I will read on. Thanks for all your info and good luck!
Referred By:
surfing the web
Age:
40-45
Name:
peter wright
Email:
peteralanwright@hotmail.com
Location:
Arlesey England sg16 6ue
Date:
Wednesday March 20, 2002 23:39:22 GMT
Comments:
not browsed whole site yet - but will return shortly to read more and explore the links.
My wife, Marilyn, has Carcinoid - with similar symptoms to yours and others I have read about. She is on Sandostatin, and has had 2 chemoembolisations of the liver. She developed jaundice after the second, and has had 3 general chemo treatments (FCST). Unlike you she suffered quite badly after each - feeling totally exhausted for about 8 days, yet sleeping poorly. We are seeing our Specialist on 22 March to discuss future actions.
Referred By:
Dr Martyn Caplin
Age:
50-55
Name:
Sheila Edgar
Email:
tonyedgar@btinternet.com
Location:
England
Date:
Tuesday March 12, 2002 20:03:52 GMT
Comments:
Sorry - I made a typing error with my name on my first sign in!
Name:
Sheila Edagr
Email:
tonyedgar@btinternet.com
Location:
England
Date:
Tuesday March 12, 2002 20:02:20 GMT
Comments:
I wish we had the level of knowledge and expertise about Carcinoid as you do in America.
Age:
56-65
Name:
Sandy
Email:
rothsteinj@hotmail.com
Location:
New Hope MN USA 55427
Date:
Monday March 11, 2002 02:06:05 GMT
Comments:
Just started reading. My husband discovered this site first and said that it sounds like just what I am going through. I have had the surgery and now I am having pain in the ab and lower quarant of ab. They are trying to diagnose this at this time to see what is causeing the pain I have ended up in ER twice since the first of the year with servere pain. So am going to read alot more of this info. Thank you for going to all the reseach for many.
Sandy
Age:
50-55
Name:
carol
Email:
creegle@aol.com
Web Site:
http://excite
Location:
east rockaway NY usa 11518
Date:
Saturday March 09, 2002 19:50:55 GMT
Comments:
i read ur article and was very impressed. although u had a good experience with dr. warner, mine wasn't. i've been to sloan/kettering and am now looking elsewhere. if u know of any other carcinoid experts or hospitals that i can contact, i would very much appreciate it. my son was diagnosed at 14 with a carcinoid tumor of the lung. he is now 16 and has been diagnosed with a tumor in his liver. sloan did not want to biopsy it but feel that it is carcinoid. i was told by sloan to contact the mayo clinic. i was wondering if u ever dealt with them and have a name i should contact directly. any info would be very much appreciated. i agree with u that aggressiveness is very important even if they say it is a slow growing tumor.
Referred By:
none
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
C. Baxter
Email:
Drusty11@aol.com
Location:
Flushing MI USA 48433
Date:
Saturday March 09, 2002 18:00:43 GMT
Comments:
Husband diagnosed with carcinoid syndrome of the outside of the small intestines..and recent CT scan showing metastisis to the bone. Monthly injections of 60mg of Sandostatin LAR, and Immonium for diahreea..Very tired, but otherwise feeling well. No serious pain attacks since Jan.2001..and was diagnosed in 2000. Was mis-diagnosed for about 3 years. Any further information would be helpful, and may God bless you Susan..Our prayers are with all who go through this awful disease..
Referred By:
Searching!!
Age:
66-79
Name:
E.V. Hannon
Email:
vhannon@clear.net.nz
Location:
New Zealand
Date:
Friday March 08, 2002 04:47:42 GMT
Comments:
My husband has just been diagnosed with carcinoid tumours and are just trying to find out a little about it as it is not at all well known here in New Zealand.
Age:
66-79
Entry:
* * * PRIVATE ENTRY * * *
Name:
Valarie Fenske
Email:
v1fenske@aol.com
Location:
Folsom CA USA 95630
Date:
Thursday March 07, 2002 17:38:31 GMT
Comments:
I so enjoyed crising through you pages. Thank yoiu for all the time it took to put this together. I am also sending this to my family, I have an uncle that will love the astrophotograhy. val
Referred By:
Deb Farris
Age:
50-55
Name:
Pat Smith
Email:
Prissypie2@aol.com
Location:
Denver CO 80012
Date:
Wednesday March 06, 2002 03:43:19 GMT
Comments:
My 53 year-old brother has just been diagnosed with carcinoid tumors. They have been unable to find the primary site, yet have found seven lesions in his liver and more in his gall bladder. The doctors (University of Virginia) seem very unconcerned and have started him on monthly dosages of Sandostatin. I am very worried as both of my parents, seven of their siblings and my grandfather have all died of various types of cancer. What else should he be doing and what symptoms should he be watching for? He is my rock and the thought of losing him so young terrifies me!
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Catherine Woolley
Email:
woolleycl@netscape.net
Location:
England
Date:
Sunday March 03, 2002 12:40:55 GMT
Comments:
My mother has just been diagnosed and we have found your site very useful. Thank you!
Age:
18-29
Name:
Kathy Bill
Email:
kbill@ci.aurora.co.us
Location:
Littleton CO USA 80125
Date:
Thursday February 28, 2002 22:04:07 GMT
Comments:
Your web page has been a wonderful resource for me. My boyfriend was diagnosed with carcinoid cancer a few weeks ago. Your links. are wonderful. Thank you
Age:
46-49
Name:
Mary Ann Opalisky
Email:
mopalisky@yahoo.com
Location:
Curwensville PA USA 16833
Date:
Thursday February 28, 2002 15:52:13 GMT
Comments:
Hi, just read your story. I was diagnosed with neuroendocrine cancer with metastes on liver in October, 2001 and am having embolization of the liver now.
Referred By:
self
Age:
66-79
Name:
Leora E. Scrivner
Email:
les45@worldnet.att.net
Location:
Olathe KS USA 66062
Date:
Tuesday February 26, 2002 23:38:51 GMT
Comments:
I've printed much of your website - haven't had time to read it all yet. I was diagnosed with carcinoid cancer in 1993 - have had 2 surgeries for it & this year surgery for breast cancer which was unrelated to the carcinoid. I'm awaiting results of 5HIAA to see if it has raised since the one 3 mos. ago. My oncologoist seems to have this "wait & see" attitude, so I'm trying to gain information. You certainly have gained information. I'm not very computer savvy.
Age:
66-79
Entry:
* * * PRIVATE ENTRY * * *
Name:
Sylvia Arvold
Email:
earvold1@aol.com
Location:
cedarburg WI USA 53012
Date:
Tuesday February 26, 2002 15:58:25 GMT
Comments:
My mother has carcinoid cancer. She had 18 inches of her small bowel removed 10 years ago. Her oncologist has been checking her every 4 months and last November told her she was still cancer free. Last week she had surgery and was told she has a large tumor (which cannot be removed because it is attached to too many organs already). How is this possible? Please help me find a carcinoid specialist in our area so we can start getting the best treatment for her. Thank you for your website and time.
Sylvia Arvold
Cedarburg, WI 53012
262-377-4352
Referred By:
found on aol search
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
Walter H. Beattie
Email:
walter.bt@rogers.com
Location:
London Ont., Canada
Date:
Sunday February 24, 2002 01:01:03 GMT
Comments:
What a mammoth study you have made and recorded! Your helpful insight is invaluable to those of us with this slow progressing, but debilitating condition. Thank you, most sincerely for your efforts.
Age:
66-79
Entry:
* * * PRIVATE ENTRY * * *
Name:
Audrey & Vince Campbell
Email:
grandsoup2@juno.com
Location:
Buckley WA USA 98321
Date:
Sunday February 17, 2002 02:53:01 GMT
Comments:
My husband Vince has just been diagnosed with Carcinoid Cancer of the liver. We have an appointment March 4th with an oncologist surgeon in Portland, Oregon. We will then find out what type of treatment to go with. Vince's primary doctor's nures's husband has carcinoid cancer so we have her as a support person to ask questions. Also our doctor was familiar with the disease so knew what tests to ask for immediately. We are very fortunate from what I have read. Any information we can obtain will be helpful.
Referred By:
Alicia Sharp
Age:
56-65
Name:
Mark S.
Email:
msmith90@winfirst.com
Location:
Sacramento CA US 95634
Date:
Friday February 15, 2002 07:20:56 GMT
Comments:
Thank you for your informative web site. I have had IBS for about 7 years and about 9 mos. ago, I experienced a persistent rash on my upper chest with cronic fatigue. I finally went to the doctor, mainly for fatigue and to find a cure for my need to sleep 10-11 hours a night. He has not been much help and though that I may need some psychatric counseling. He is testing my liver/thyroid, at my request. Anyway, after reviewing several web sites like yours, I have scheduled a full body CT scan, at my own cost, and I plan on having the H1AA urine test and a colon test done evlauate carcinoids or stomach/colon cancers. If any positive results come back from the CT scan, I am bypassing my current doctor and heading straight to a specialist. Thanks again for your info and for staying positive.
Referred By:
webcrawler search
Age:
40-45
Name:
Maria Martin
Email:
m-martin2000@rogers.com
Location:
Oshawa Canada L1K1K6
Date:
Monday February 11, 2002 21:55:28 GMT
Comments:
My husband had colon cancer and had the cancer removed. They discovered six small carcinoids in the small intestine.They were removed and we were never given any more answers. Maria
Age:
46-49
Name:
Jim Ovelman
Email:
Ovelman_85747@yahoo.com
Location:
Tucson AZ USA 85747
Date:
Saturday February 09, 2002 00:15:20 GMT
Comments:
Your WebPage is rich in information and I look forward to reading it.
Referred By:
Susan
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
Peter Yarborough
Email:
peteryarborough@yahoo.com
Location:
Carnation WA USA 98014
Date:
Friday February 08, 2002 06:47:06 GMT
Comments:
Hi Susan,
Thank you, for your website. May all your dreams come true!
Age:
40-45
Name:
Millie Gearhart
Email:
nanagear8@hotmail.com
Location:
Muncy PA U.S.A. 17756
Date:
Monday February 04, 2002 01:29:03 GMT
Comments:
Tried Al's link but couldn't get it.
Appreciate you all sharing and God Bless.
Age:
56-65
Name:
Angela
Email:
Benny2197@aol.com
Location:
Auburn WA USA 98002
Date:
Wednesday January 30, 2002 05:29:38 GMT
Comments:
Thank you Susan, you and your story have given me hope and a new will to fight, thank you for being an inspiration....Angela
Age:
30-39
Name:
Angela
Email:
Benny2197@aol.com
Location:
Auburn WA USA 98002
Date:
Wednesday January 30, 2002 05:29:30 GMT
Comments:
Thank you Susan, you and your story have given me hope and a new will to fight, thank you for being an inspiration....Angela
Age:
30-39
Name:
Kris Harper
Email:
k.harper@attbi.com
Location:
Denver(Westminster) CO US 80234
Date:
Monday January 28, 2002 02:18:50 GMT
Comments:
I was diagosed with carcinoid in 5/2001 during a hysterectomy. Had a second surgery to remove the omentum, some bowel bypass and some intestine removal. Did not find primary tumor but left with many small tumors on lymphs in mesentary ring.

Have Sandostatin LAR month and CT Scans/HIAA5/Chromogratin tests quarterly. ALL is GOOD.
Referred By:
CF
Age:
40-45
Name:
Ray Bryk
Email:
rbryk@hotmail.com
Location:
St. Catharines Canada L0R1S0
Date:
Monday January 28, 2002 00:20:39 GMT
Comments:
Really enjoyed your website and all the valuable info it contains. I admire your courage and stamina in not only fighting this creeping disease, but being able to maintain an almost normal life style in spite of it. My carcinoid misdiagnosed for 3 years. CT scan finally showed carcinoid tumor in LRQ on Oct.29/01 after I noticed a lump. Surgery Dec.7/01 removed half of colon, portion of small intestine and some mesentery. Discovered mets to liver but will not operate on it. No chemo recommended either. Next meeting with oncologist Feb.4/02 and I'll be armed with alot more info to treat this more agressively. Keep up the good work and may God bless. Ray.
Referred By:
search engine
Age:
50-55
Name:
Nicol Whalen
Email:
nswahlen@sover.net; jwhalen2@sover.net
Location:
Arlington VT USA 05250
Date:
Sunday January 27, 2002 15:40:57 GMT
Comments:
I am sure that you know of my family's situation through your contacts with Mary Leonard -- her brother, Tom Whalen, is my father-in-law. We receive e-mails from Mary with information she has received through your web site and e-mail lists. I always appreciate what she sends along as I'm not good at keeping current with all of the information that is available. I was hoping to be added to e-mail lists that would help keep us current with the latest information/ news on carcinoid. I have listed both of our e-mail addresses above.

You have provided an invaluable resource for people who's lives have been touched by carcinoid.

My husband and I would be grateful for any relevant information that you could pass along.

Thank you,
Nicol & John Whalen
Referred By:
Mary Leonard
Age:
30-39
Entry:
* * * PRIVATE ENTRY * * *
Name:
RENA K WOOD
Email:
RKW2550@earthlink.net
Location:
kent CT usa 06757
Date:
Friday January 25, 2002 16:23:57 GMT
Comments:
I ALSO HAVE CARCINOID AND HAVE BEEN PUT ON SANDOSTATIN LAR BUT INSURANCE IS GIVING ME NOTHING BUT DENIALS FOR PAYMENT,DO YOU HAVE ANY THOUGHTS OR SUGGESTIONS? THANK YOU FOR THIS WEBSITE. RENA WOOD
Age:
50-55
Name:
Andy Galea
Email:
andy906@aol.com
Location:
New York NY USA 11373
Date:
Wednesday January 23, 2002 14:11:02 GMT
Comments:
Having just been diagnosed with carcinoid, I find the information here a great place to initiate follow up treatment. I tried your Susans email address but it would not go through. I have several questions I'd like to pose with a direct email. Please let me know the correct address.
Sincerely yours, Andy G.
Age:
56-65
Name:
Michael D. Myers
Email:
myersmd1@juno.com
Web Site:
http://None
Location:
Ottumwa IA USA 52501
Date:
Saturday January 19, 2002 15:04:47 GMT
Comments:
Going to start looking for tumor in a couple of days. Unsure at this time where it is located. Have lots of questions....my mind is spinning.
Age:
56-65
Name:
SHIRLEY ARCHER
Email:
sjarcher98223@yahoo.com
Web Site:
http://carcinoid
Location:
Arlington WA 98223
Date:
Thursday January 17, 2002 04:41:43 GMT
Comments:
My mother was just diagnosed with carcinoid cancer Dec 2001...she has had symptoms for about 2yrs
and seeking medical advise from what I feel is inadequate medcical advise...for the last 7 months.
We took her to emergancy and it was the ER Dr who discovered the tumor, this is after the endocopy,
and colonoscopy in addition to all the other tests. she had a tumor in the small intestine and they
have found another in the left lung, she has decided not to persue any further treatment and my husband
and myself have to respect her wishes. I found your site to be extremely informative and helpful. I will
be visiting often for support. you are truley an inspiration. Shirley
Referred By:
above website
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
Joann Forlina
Email:
Luckypeka2@aol.com
Location:
Gallitzin PA United States 16641
Date:
Thursday January 17, 2002 00:54:35 GMT
Comments:
My sister-in-law has this same cancer. She is in soo much pain she thinks she is going to die. She has not eaten a regular meal in over two months. Right now she is trying to overcome the nasea so that she can start her chemo. Tonight she asked me if she is going to die? I told her no. I then came home and found your story. It is much similar in many of her same diagnoses except that there is a lymp node wrapped around her aorta vein. Can you maybe tell me if there is a case of this out there so I can give her some hope?
Age:
30-39
Name:
Jack Powell
Email:
jpowell@glas92.freeserve.co.uk
Location:
Glasgow UK G46 6HR
Date:
Monday January 14, 2002 09:46:11 GMT
Comments:
I was diagnosed with Carcinoid Cancer in May 2001 after being admitted to hospital suffering from severe abdominal pains. I was operated on to remove a section of small intestine and the lab results showed Carcinoid to be the cause.

Since recovering from the operation I have been fine. I am not on any medication and I have not so far experienced any of the typical symptoms of Carcinoid.

I have found your site very informative and will keep visiting it to keep myself up to date with developments. I would also like to make contact with other Carcinoid sufferers, particularly in the UK, to exchange experiences.

Kindest regards


Jack Powell
Age:
50-55
Name:
Claude Weber
Email:
Driftr@pacbell.net
Location:
Merced CA USA 95340
Date:
Saturday January 12, 2002 18:16:14 GMT
Comments:
I have had diarrhea and flushing for 9 months. I also had RLQ abdominal pain that started 10 weeks ago. I was diagnosed with a carcinoid tumor on December 22, 2001 from a biopsy taken during a colonoscopy. The tumor is located in the cecum next to the ileocecal valve (1.5cm x 2cm according to my CT scan). My 5-HIAA came back slightly elevated at 7.7 I will have a review by the tumor board at Standord University this next week and a OctreoScan the following week with surgery scheduled after that. To me it seems like such a long time to wait the 6 weeks from diagnosis till surgery. Thank you for all the great information on your web site. It is very helpful.
Referred By:
search engine
Age:
46-49
Name:
Athel
Email:
juatathel@yahoo.com
Location:
West JEfferson NC USA 28694
Date:
Friday January 11, 2002 02:13:41 GMT
Comments:
A physician told me 13 years ago that it was his belief that I had carcinoid syndrome. Urine tests were abnormal, CT did not define any specifics. I still have many of the chronic signs: flushing, terrible diarrhea at times, asthma type breathing, pain in RLQ, at one time a soft tissue mass in small intestines. However several other physicians have ignored mt situation when they find only a borderline abnormal urine test. I am also a multiple sclerosis victim (at least three lesions on right side of brain). I have no means to pursue my problems, having been told I have IBS, a catch-all diagnosis. I do have periods of somewhat normal life, but I am still convinced I have carcinoid. Thanks for listening (by inernet). Athel
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Christa Dickens
Email:
dcjt4@msn.com
Location:
Pittsburgh PA 15017
Date:
Wednesday January 09, 2002 00:29:22 GMT
Comments:
I just wanted to update you on a new E-mail address.
My old address was dickens@evs.cbs.com.
Please use my new address as I have enjoyed hearing from you for the last two years and find that your information is
extremely helpful.
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
Scott Reid
Email:
trvl555@aol.com
Web Site:
http://vacationquesttravel.com
Location:
Mesa AZ USA 85201
Date:
Monday January 07, 2002 22:17:30 GMT
Comments:
Thank you for your valuable information. My Mother has been diagnosed with carcinoid cancer. Your story and information has and will countinue to help us as we travel down this new road. We also share the same beautiful metropolitan area, I live in Mesa and my Mother lives in Gelndale.
I have already contacted Dr. Cavalcant's office hoping to get an appointment. So far the Doctors have said they know very little about this type of cancer and need to do research. I think it is best to go with a doctor has experience with this rare cancer.
Again, Thank you for publishing your story and your all your dedicated research.

Scott Reid
trvl555@aol.com
Age:
30-39
Name:
Lynn Rogers
Email:
georginaandrobin@hotmail.com
Location:
UK England EX32 7ET
Date:
Friday January 04, 2002 15:23:35 GMT
Comments:
I have been trying to find out about Carcinoid Cancer for 3 years with out any sucess but now with your help may be I can understand it.They say thrie is no cure for my husbands cancer of the liver but I will not give up I can't. Thank you so much for your pages. I will not give up never.
Referred By:
through the internet
Age:
40-45
Name:
Roger Vedmore
Email:
Rog5@webtv.net
Web Site:
http://none
Location:
Kalamazoo MI USA 49008
Date:
Friday January 04, 2002 00:40:43 GMT
Comments:
Alot of info learned about Carcinoid Cancer. I was diagnoised with Carcinoid Cancer several weeks ago and have researched the web for many articles, yours was the most informative. Thanks
Referred By:
Search
Age:
66-79
Name:
gerry huber
Email:
gwhuber@home.com
Location:
omaha NE usa 68104
Date:
Wednesday January 02, 2002 06:53:00 GMT
Comments:
My father (71yrs) and I are browsing the web to find info on carcinoid cancer (he was diagnosed last January 01) is on sandostatin, tincture of opium, immodium and chemo. He has an unusual tumor as it was found in his abdomen. We were told it was the size of a large grapefruit and they were unable to remove all of it because of its involvement with blood vessels (aorta). No primary site was found, but it had spread to lymph nodes and we were also told that he has "studding" throughout his abdomen. Biggest problem right now is lack of energy and chronic diarreha. He also developed carcinoid syndrome shortly after the tumor was debulked. 5hiaa urine test is coming back great so treatment has helped a lot. Thanks for the web site, lots of good info.
God bless.
Referred By:
web search
Age:
40-45
Name:
ROBERT E. SMITH
Email:
PEPSI365@AOL.COM
Location:
CHARLESTON SC USA 29401
Date:
Sunday December 30, 2001 01:28:42 GMT
Comments:
I just learned that I have Carcinoid tumors in my liver lung,upper chest and left pevic. Who will talk to me about my future treatment and course of action. I would like to hear from someone with this disease.
Age:
56-65
Name:
George Koeppen
Email:
georgek2@mac.com
Location:
Las Vegas NV usa 89142
Date:
Monday December 24, 2001 00:18:07 GMT
Comments:
I was diagnosed with carciniod cancer covering over two thirds of my liver on 10/26/01. Had the scan and didn't find a source, started chemo on 11/02 have one more cycle to complete and then ct scan. Thanks for your site not many know about this it helps to find others.
Referred By:
ccf
Age:
40-45
Name:
maria r. cirianni
Email:
saracir@aol.com
Location:
raritan NJ usa 08869
Date:
Saturday December 22, 2001 02:30:52 GMT
Comments:
I am very glad to have read your story. I had a carsonoid tumor on my small intestine and had gone to the lymph nodes. I had surgery, but my doctor is telling me that I no longer have the cancer. Just follow with yearly ct scan.
I am not sure if is right. Please respond.
Maria
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Robert E. Smith
Email:
Pepsi365@aol.com
Location:
Charleston SC USA 29401
Date:
Tuesday December 04, 2001 14:07:58 GMT
Comments:
I am 57 years old and without any symthoms of any kind had a preventive scan and found three tumors on my liver. I had a liver biospy and afater many days of trying to identify the tumors, they finally came up with carcinoid. I had the urine (24 hour) and the iodine medicine three days before I spent three sessions under the gama camara. today I go to see my Oncologist for the results. I am very concerned.
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Dan Pipal
Email:
pipal@aol.com
Location:
Oakdale CA usa 95361
Date:
Friday November 30, 2001 06:01:44 GMT
Comments:
My dad was just diagnosed with small cell liver ca yet they are unsure of the source. They found a 6 cm x 18 cm tumor near his colon that was not small cell in nature. The doctors have told us they suspect a small cell type of tumor in the vicinity of the small intestine. UCSF has not provided their objective informaiton to support his claim. He has had a long hx (10 year plus) of irregular bowel movements. All of the doctors tell us that the presentation of this CA is extremely atypical. I sure would like to find someone else who has heard of the same presentation. Thank you for your efforts with this web page!
Referred By:
msn search
Age:
30-39
Name:
kaaren long
Email:
kl@jccomp.com
Location:
winters CA usa 95694
Date:
Friday November 30, 2001 05:14:00 GMT
Comments:
My dad was just diagnosed the carcinoid syndrome. We had never heard of it. He has them in his liver, stomach, and intestines. Thanks for the info.
Referred By:
www.carcinoid.org
Age:
40-45
Name:
Charles Worthington
Email:
clwj@ shentel.net
Location:
Winchester VA 22601
Date:
Friday November 30, 2001 02:28:03 GMT
Comments:
I was operated on October 2, 2001 to remove two carcinoid tumors in the small bowel. Remaining is the mass deep in the root of the mesentery around the artery.

I would appreciate being in contact with any one with this type of carcinoid.
Age:
50-55
Name:
Arlene Schriner
Email:
ollie2bob@aol.com
Location:
Findlay OH
Date:
Friday November 30, 2001 00:48:46 GMT
Comments:
Read with interest the info on carcinoid. No formal dx yet, but have had about a dozen episodes of flushing followed by diarrhea. Have ruled out GB involvment and hot flashes. Almost always have a gnawing pain left upper quad. Shadow showed on last mammogram, but showed nothing on ultrasound. UGI scheduled for next week. Am a dietitian so looked for a dietary link. At least my MD is pursuing this. Thanks for listening!
Referred By:
self
Age:
40-45
Name:
PATSY MATZINGER
Email:
matzelec@mcn.net
Location:
BOZEMAN MT USA 59715
Date:
Thursday November 29, 2001 22:30:33 GMT
Comments:
I AM TRYING TO FIND PEOPLE TO TALK TO ABOUT CARCINOIND. THANKS.
Age:
50-55
Name:
Jo-Lynn Hefferman
Email:
wardrum@fgn.net
Location:
Cheyenne WY USA 82009
Date:
Thursday November 29, 2001 03:50:10 GMT
Comments:
I would like to rejoin your list, Susan. My husband, Eric, was diagnosed with adenocarcinoid in 1997.
We are seeking more info on effective chemos, etc.
Referred By:
Karen Kane
Age:
50-55
Name:
Teresa Sheffey
Email:
Tsheffey@aol.com
Location:
El Paso TX USA 79936
Date:
Friday November 23, 2001 17:03:47 GMT
Comments:
Susan,
Thank you for all the wonderful information, advice, and years of research. Most of all taking the time to make it available to others.
Teresa in El Paso
Referred By:
Carcinoid ACOR
Age:
46-49
Name:
Lena Svensson
Email:
freespirit@telia.com
Location:
Sweden
Date:
Tuesday November 20, 2001 14:36:58 GMT
Comments:
Dear Susan!
I can really feel how much you love life, you have a great
spirit and seems to be a strong person!That's just like me
and I know that a strong belife and "love to live" can take
you through rough times.I have been treated for endocrin pancreas tumor for 1½ years, with the same injections like you.WE CAN MAKE IT!(George Jones!!!)
Good to hear that you like Bluegrass.I only listen to country music and that's really helps me to a great mood now.
Thank's for your information on your site.
Take care of you and LIVE A REAL LIFE EVERY DAY!
Kind regards from Lena
(Sorry if my english is not so good)
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
Lena Svensson
Email:
freespirit@telia.com
Location:
Sweden
Date:
Tuesday November 20, 2001 14:36:46 GMT
Comments:
Dear Susan!
I can really feel how much you love life, you have a great
spirit and seems to be a strong person!That's just like me
and I know that a strong belife and "love to live" can take
you through rough times.I have been treated for endocrin pancreas tumor for 1½ years, with the same injections like you.WE CAN MAKE IT!(George Jones!!!)
Good to hear that you like Bluegrass.I only listen to country music and that's really helps me to a great mood now.
Thank's for your information on your site.
Take care of you and LIVE A REAL LIFE EVERY DAY!
Kind regards from Lena
(Sorry if my english is not so good)
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
Dr. James Coleman
Email:
Dr. Coleman@CancerResearchAmerica.org
Web Site:
http://www.CancerResearchAmerica.org
Location:
Louisville KY USA 40222
Date:
Saturday November 17, 2001 04:46:46 GMT
Comments:
Basic to the primary prevention of breast cancers is knowing what are the underlying causes. After decades of research, we now know what are the major causes of breast
cancer and fatal breast cancer. With this new information, we have developed a tool for use in determining what a woman must do to prevent a recurrence of breast cancer of its first occurrence.
Referred By:
Search engines
Age:
66-79
Name:
Mary Elaine Kiener, RN, PhD
Email:
mary@askmehouse.com
Web Site:
http://www.askmehouse.com
Location:
Lansing MI USA 48906
Date:
Friday November 16, 2001 02:12:12 GMT
Comments:
Dear Susan--I have just discovered your website, and am beginning to work my way through it......My (74 year old) husband was recently diagnosed with metastatic carcinoid cancer (had a baseball sized tumor removed from his thymus gland, with positive biopsies from lung tissue and breast bone)......Just got results of baseline bone scan and cat scan.....He has some "black spots" on the bone scan around the parts of his rib cage where he's having pain.....

Thank you (in advance) for all of your work.....I look forward to getting better acquainted with your work (and hopefully with you personally! )
Mary Elaine Kiener, RN, PhD
Holistic Nurse Consultant and
Transformative Health Coach
Age:
50-55
Name:
Charlotte Christensen
Email:
grannyo@inetnebr.com
Location:
O'Neill NE USA 68763
Date:
Saturday November 03, 2001 22:47:47 GMT
Comments:
I clicked on the Breast Cancer Site, it came up "this page can not be displayed, etc....I was disappointed, I am trying to research infiltrating ductal carcinoma
Age:
56-65
Name:
Orville Hamilton
Email:
ohamilto@Johnson.k12.ky.us
Location:
Paintsville KY USA 41240
Date:
Wednesday October 24, 2001 19:03:13 GMT
Comments:
Recently was diagnosed with Carcinoid cancer, it was discovered after partial lung removal. I am currently taking sandostatin but concerned that it masks the symptom without shrinking the tumor. I am interested in all articles concerning aggressive treatment for carcinoid. I was first told I had 6 months to live but now in a holding pattern to see if sandostatin will help shrink the tumor. Your web site was been very informative.
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Maggie Rickard
Email:
deeprainbow@aol.com
Location:
San Antonio TX USA 78109
Date:
Tuesday October 23, 2001 02:59:06 GMT
Comments:
I was so glad to finally find a web site that talked about current research. I was beginning to think that carcinoid patients had been forgotten because our tumors are "slow growing." I question that description because when I was diagnosed in April 2000, I was told I could easily live 20 years. In June 2001 the disease had progressed so much that my prognosis had been reduced to 5 years IF the new treatment we decided to try goes well. I will visit this site (and some of the links) frequently for updates. Thank you for providing a big dose of hope.

Maggie Rickard
Referred By:
my mom
Age:
40-45
Name:
Richard Giordano
Email:
Cejane@aol.com
Location:
Norwalk CT USA 06850
Date:
Monday October 15, 2001 23:09:21 GMT
Comments:
Thymic Carcinoid with Cushings Syndrone. Elevated ACTH as Chemical Marker Tumor debulked 9/00, Put on Sandostatin LAR and Interferon, My treatment is being overseen by Dr. Richard Warner in NYC Ki-67 was level 30.
Referred By:
Carcinoid Support
Age:
46-49
Name:
Ed
Email:
ed707gm@aol.com
Location:
NJ USA
Date:
Sunday October 14, 2001 18:53:15 GMT
Comments:
You have a very informative site. It's been very helpful. Please put me on your mailing list. Thank you.
Age:
56-65
Name:
John Wilson
Email:
jrob@hbeark.com
Location:
Green Forest AR USA 72638
Date:
Sunday October 14, 2001 00:57:30 GMT
Comments:
Hello I just wonted to thank you for the emails you send me they really provide lots of information. I have carcinoid and am doing very well, I wont to tell everyone out there that they should keep thier spiriots up and keep on living thier lives to the fullest.. thanks john
Age:
30-39
Name:
Billie H. Mace
Email:
macecomp@aol.com
Location:
Atlanta GA USA 30318
Date:
Tuesday October 02, 2001 06:35:23 GMT
Comments:
My 64 year old Mother was diagnosed with Carcinoid this past July. She lives in SC and we went to Duke last week. I wrote down many of your comments and will be asking him some questions at her recheck in November. Thank you for the information.
Referred By:
carcinoid.org
Age:
30-39
Name:
Patty Pella
Email:
TootsieRollEight@cs.com
Location:
EggHarbor Twp NJ USA 08234
Date:
Friday September 28, 2001 23:34:37 GMT
Comments:
I just found out I have carcinoid tumors in my liver and have been very depressed and upset, But you have lifted my spirits. Thanks!
Age:
40-45
Name:
Brett Watson
Email:
watsonb@ihug.com.au
Location:
Adelaide Australia 5049
Date:
Monday September 24, 2001 07:52:05 GMT
Comments:
Thank you for all the information. Every doctor I have seen in Adelaide tells me that I am their first carcinoid patient, so it is very hard for me or them to get information on this disease.
Referred By:
Carcinoid Cancer Foundation website
Name:
Evela R. Bourgeois
Email:
evelab@stargazer.net
Web Site:
http://None
Location:
Hester LA USA 70743
Date:
Saturday September 22, 2001 05:13:55 GMT
Comments:
Thank you for that wonderful site. I too was diagnosed (12-1997) with mid-gut carcinoid, given only 3-6 months to live. Then, I found Dr. Lowell Anthony at LSU Medical in New Orleans.
Sandostatin is great, but the Xeloda proved unsuccessful.
I could easily change your name on your web page and put mine, even your "ESTJ." I start with Interferon 300 M-F this coming Monday. Also, I had a debulking surgery which helped somewhat. (Tumors were the size of grapefruit!)
The removed gallbladder had cancer. No problems yet with the liver. Thanks.

Evela
Referred By:
Internet
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
Snowspondy
Email:
Snowspondy@aol.com
Web Site:
http://www.Spondyville.com
Location:
Spondyville USA
Date:
Thursday September 20, 2001 18:38:24 GMT
Comments:
Hello. I have visited your site as part of my "Run Across the Internet". I am attempting to visit 10,000 sites in 100 days in order to raise awareness of Ankylosing Spondylitis, a chronic degenerative rheumatic disease that affects the spine and neck, often making the joints and vertebrae stiffen and fuse together.

To learn more, please visit my two favorite sites:

The Spondylitis Association of America (SAA): http://www.StopAS.org

and the AS online Support Group, Spondyville: http://www.spondyville.com

Your pal,

SnowSpondy
Name:
Michelle Weber
Email:
michelle.weber@rpscherer.com
Location:
Lafayette LA usa 70503
Date:
Tuesday September 18, 2001 13:50:32 GMT
Comments:
Your website was great. I have a 57 year old mother who suffers from carcinoid cancer. She is currently under the care of Dr. Anthony Lowel. She was diagnosed in 1997 and suffers daily. I enjoyed reading your story.
Age:
18-29
Entry:
* * * PRIVATE ENTRY * * *
Name:
John E. Pohlman
Email:
john.pohlman@lambweston.com
Location:
Twin Falls ID 83301
Date:
Monday September 17, 2001 03:11:39 GMT
Comments:
Recently diagnosed w/lung carcinoid. Trying to learn all I can. Thank you.
Referred By:
CCF Web Site
Age:
46-49
Name:
Shirley L Malanowski
Email:
Sunnygiggles@msn.com
Location:
Lakeland FL USA 33810
Date:
Sunday September 16, 2001 02:55:38 GMT
Comments:
I was particularly interested in your web page as my husband was diagnosed with carcinoid syndrome in April of this year.
Referred By:
Yahoo Carcinoid Group
Age:
46-49
Entry:
* * * PRIVATE ENTRY * * *
Name:
Joyce L. Lamy
Email:
The-Empress@mindspring.com
Location:
Roswell GA USA 30075
Date:
Sunday September 09, 2001 21:08:12 GMT
Comments:
Susan - Found your website while searching for info on carcinoid cancer. My husband, Ray, received this scary news just this past week. We have an appointment with an Oncologist in two weeks and need to be as prepared as possible. Thanks for all you information, research and sunny attitude.
Age:
50-55
Name:
Mary Bernardini
Email:
mbtn@aol.com
Date:
Wednesday September 05, 2001 02:13:51 GMT
Comments:
I was diagnosed with carcinoid tumors in July, 2001, underwent surgery,had three tumors removed,but 50-75 more were discovered in the lining of the abdomen (too many to remove). I will have my first oncology visit tomorrow. I just happened to find your web site this evening and found your story so enlightening. Thank you so much for sharing with all of us who are going through various phases of carcinoid tumors.
Age:
56-65
Entry:
* * * PRIVATE ENTRY * * *
Name:
pat scotti
Email:
pattyann100@hotmail.com
Location:
palm harbor FL 34683
Date:
Tuesday September 04, 2001 20:43:01 GMT
Comments:
My mom has carcinoid and I just took the chromogranin A test. It came back high at 19. Can you give me any information about this. Thank you, Patty
Referred By:
flora hebert
Age:
46-49
Name:
Harry Roberts
Email:
bowielindy@aol.com
Location:
Little Rock AR USA 72207
Date:
Friday August 31, 2001 20:46:55 GMT
Comments:
Please send emails to bowielindy@aol.com
Thank you,
Harry
Referred By:
Bdrdavis@aol.com (Brenda )
Age:
56-65
Name:
Pauline Kimpton
Email:
kimptons@lineone.net
Location:
Telford England TTF1 3PT
Date:
Thursday August 30, 2001 19:40:44 GMT
Comments:
My carcinoid cancer was diagnosed at the beginning of 2001 and it was so difficult at first to find out anything about it. I found the Carcinoid Cancer Foundation Inc website some time ago, and quite recently your web page which has such a lot of useful information and shall continue to revisit. I am at present undergoing therapy involving a compound of two radioactive isotopes and octreotide, which comes from Switzerland, and which is working very successfully. This is quite new in the U.K. although has been in use by the Swiss for 10 years. I am encouraged by the length of time which has elapsed since your diagnosis. Best wishes.
Age:
66-79
Name:
Melanie Williams
Email:
CWill88@aol.com
Location:
Dana Point CA usa 92629
Date:
Wednesday August 29, 2001 23:01:50 GMT
Comments:
I would like to know if anyone has tried pegylated interferon and what were the results. It is very new and is supposed to have less side effects and is longer lasting than interferon a. Please respond if you have any info. Thanks.
Age:
56-65
Name:
Robert A. Pritchard, R.N.
Email:
rallenpritchard@netscape.net
Location:
Martinez CA U.S.A. 94553
Date:
Tuesday August 28, 2001 00:59:22 GMT
Comments:
Thanks so much for your page. I am keeping your link for home. I have been reading it at work and staying overtime. I'll be writing you an e-mail later. My wife and I are 64 and 65 and nearing retirement which we will probably not. We have 5 children and 14 grandchildren and I plan to see most of them married and with children. Thanks again.
Referred By:
ACOR Carcinoid Group
Age:
56-65
Name:
Heather Gutsell.
Email:
bgutsell@hyper.net.nz
Web Site:
http://N.A.
Location:
Dunedin. New Zealand. 9001.
Date:
Sunday August 26, 2001 11:58:02 GMT
Comments:
Found your site very interesting and will be back again. So much to read up on. I was diagnosed 1999 4-6 tumors in liver. Told this was unoperable. Am on Sandostatin for flushes. Would be very grateful for any information you can give me, not sure how much they know about it here.
Referred By:
Loooking up Carcinoid sites.
Age:
56-65
Name:
Ken & Angie Files
Email:
kandafiles@netcommander.com
Web Site:
http://N/A
Location:
Cochran GA USA 31014
Date:
Sunday August 26, 2001 04:38:53 GMT
Comments:
Susan,
Your web page brings back many memories. I was lucky enough to be referred to a Pulmanologist(only by chance) in early 1993 that had specialized (researched) Carcinoid Tumors while doing his residency. I was diagnosed in March 1993 with a Carcinoid Tumor (lung). In April of 1993 I had the upper half of my left lung removed with no follow-up treatments prescribed. I have been considered clear since that time.
Referred By:
Search Engine
Age:
40-45
Name:
David Dalrymple
Email:
natwondersphoto@aol.com
Web Site:
http://naturalwondersphotography.com
Location:
Rockford MI USA 49341
Date:
Thursday August 23, 2001 18:34:30 GMT
Comments:
Just wanted to send a prayer your way....
Age:
30-39
Name:
Faith Williams
Email:
Faithmw@yahoo.com
Location:
Washington DC USA 20015
Date:
Saturday August 18, 2001 15:15:29 GMT
Comments:
I do not have carcinoid cancer myself, but I have a good friend in Colorado — she and her husband are still in some shock, and don’t surf the web easily. She’s a very private person. But they had not yet consulted a carcinoid expert —now they plan to go to Woltering (after my nagging).

I hope they’ll read your page. Thank you and bless you for what you’ve done for carcinoid patients.

Faith
Age:
56-65
Name:
Mary Kay Waits
Email:
mkwaits@home.com
Location:
Santee CA 92071
Date:
Tuesday August 14, 2001 05:32:01 GMT
Comments:
Thanks for this site. It has helped me and my husband
see that we are not alone in his fight. It has also
helped me to stay aggressive in his treatments. The
whole ordeal has only been going on for four weeks, since
the original diagnosis and first surgery, but we have learned
more on the internet than from our actual doctors.
They have all been great though and are open to suggestions
and any help from other doctors.

I will keep watching your site.

Mary Kay Waits
Referred By:
Found your site through the carcinoid research site
Age:
46-49
Entry:
* * * PRIVATE ENTRY * * *
Name:
Susan Reed Crawford
Email:
tcrawfo3@columbus.rr.com
Location:
Powell OH USA 43065
Date:
Monday August 13, 2001 19:50:40 GMT
Comments:
I know you've saved others' lives, and you may very well have saved mine. Aside from lots of Sandostatin, we've been told to take the "wait and see" approach. My case is complicated by the fact that I have a genetic disease call PAI-1. This is an endocrine disease that makes me resistant to my own insulin, and I can't break down my blood clots very well, which has meant that I've had lots of trouble with surgical adhesions in the past. I'm receiving excellent treatment for these two conditions, but literally no on knows about the influence of the PAI-1 anomaly on the development of Carcinoid. I realize I must be more assertive, and I thank you for wonderful example. Please add my information to any and all mailing and e-mail lists. I've only just begun to fight. Thank you and God bless.
Referred By:
web search
Age:
46-49
Name:
John R. Wilson
Email:
jrob@hbeark.com
Web Site:
http://hbe internet
Location:
Green Forest AR USA 72638
Date:
Thursday August 09, 2001 17:11:16 GMT
Comments:
Jus wonted to let you know your not alone in your fighting this cancer. I to have carcinoid cancer. Your Friend John..
Referred By:
????????
Age:
30-39
Name:
Janice Stitak
Email:
janice@coretechnology.com
Location:
Sheffield OH usa 44054
Date:
Thursday August 09, 2001 12:10:56 GMT
Comments:
I felt as though I was reading my own history. After many years I have found a Doctor who mentioned Carinoid and was releived to know my illness had a name, although the initial tests are not confirming it, I feel this is it.
Age:
40-45
Entry:
* * * PRIVATE ENTRY * * *
Name:
Joyce Muth
Email:
joycemuth@aol.com
Location:
Westerville OH usa 43081
Date:
Thursday August 09, 2001 05:10:56 GMT
Comments:
none
Age:
50-55
Name:
Blue Scott-Massey
Email:
Buey703@aol.com
Location:
Merritt Island FL USA 32952
Date:
Wednesday August 08, 2001 01:05:17 GMT
Comments:
I was diagnosed with Carcinoid cancer a month ago, 7/2001
Age:
56-65
Name:
phyllis kopick
Email:
pkopick@yahoo.com
Location:
mukilteo WA u.s.a. 98275
Date:
Monday August 06, 2001 06:28:22 GMT
Comments:
everything I read right now is like a foreign language. It is nice to know web sites such as yours is out there. It makes me feel so-not alone.
Age:
50-55
Entry:
* * * PRIVATE ENTRY * * *
Name:
Bernice Harris
Email:
Bernicepat@aol.com
Location:
San Pablo CA USA 94806
Date:
Monday August 06, 2001 06:00:56 GMT
Comments:
I was diagnosed with a Carcinoid Tumor on June 25,2001.Your Web site is very helpful as I'll be having surgery within the next few months. Doctor states this is the best tumor to have, if you're going to have a tumor. My tumor is very slow growing and that is whyI'm blessed.
Referred By:
Located while searching the web
Age:
56-65
Name:
William (Bill) Bacon, Jr.
Email:
bbaconjr@yahoo.com
Web Site:
http://none
Location:
Madison CT 06443
Date:
Monday July 30, 2001 12:51:26 GMT
Comments:
Excellent web site. Thanks for sharing.
Referred By:
carcinoid.org
Age:
56-65
Name:
Deanna Middleton
Email:
middledrm@msn.com
Location:
Dallas TX 75227
Date:
Sunday July 29, 2001 11:06:21 GMT
Comments:
Dear Mrs. Anderson, You are an inspiration! My good wishes are with you for continuing good news for your health and for your wonderful attitude. Thank you for sharing your story. It is wonderful to know that you are sharing the latest news from your own research and personal experience for others' benefit. My mother was diagnosed with adenocarcinoid of the appendix in May 1989 at the age of 42. She passed away at 45 after treatment with 5FU and leucovourin. I am glad to see that new advances and drugs have been made to help those that have been diagnosed since she was.My mother was a both a lovely lady and a fierce fighter like you. I send good thoughts for both. Sincerely, Deanna Middleton
Age:
30-39
Entry:
* * * PRIVATE ENTRY * * *
Name:
Gail & Bill Peterson
Email:
gpeterso@aye.net
Location:
Clarksville IN US 47129
Date:
Friday July 27, 2001 15:28:52 GMT
Comments:
I found your site interesting!
Referred By:
Found when looking up Carcinoid Cancer
Age:
50-55
Name:
Steve Butler
Email:
SButler123@aol.com
Location:
Apple Creek OH USA 44606
Date:
Friday July 27, 2001 14:28:16 GMT
Comments:
A great site. Lots of great info. Thanks
Referred By:
internet search
Age:
46-49
Name:
Nikki Roth-Skiles
Email:
nikki@ptdprolog.net
Web Site:
http://home.ptd.net/~nikki
Location:
PA
Date:
Tuesday July 24, 2001 22:36:25 GMT
Comments:
I just wanted to let you know I finally got here and I appreciate all the work you have put into your pages. My "big brother" was just recently diagnosed with Transitional Cell Cancer which is the most aggressive form. It is strictly limited to men as far as I can learn. We are hopeful that even though it has spread to his lymph nodes, he will be a survivor. He has chosen to be treated at Fox Chase Cancer Center which is affiliated with Temple University in Philadelphia. I strongly recommend the placefor i's upbeat attitude and care.
Referred By:
Susan
Entry:
* * * PRIVATE ENTRY * * *
Name:
Christina Smith
Email:
txweatherwife@home.com
Web Site:
http://ourAngelLinda.homestead.com/memorial.html
Location:
Arlington TX 76002
Date:
Tuesday July 17, 2001 17:26:44 GMT
Comments:
Thank you so much for putting my mom's memorial page on your site. It brings tears to my eyes
to see it there among all of your wonderful work. Because my mom was a nurse, I know she would
love all the information on your site. You are doing a great job and keep getting the word
out to as many people as you can!

I have updated my mom's webpage and added the article written for Coping Magazine (in case you have not
read it).

Christina
Age:
30-39
Name:
Michael J McLaughlin
Email:
michaeljm@canada.com
Location:
Calgary, AB Canada T2X 1X4
Date:
Monday July 16, 2001 14:48:57 GMT
Comments:
Dear Susan, My mother was 'misdiagnosed' for several years and recently discovered that she has Carcinoid Cancer instead. She found you 'story'and passed it along to me. It was very eye opening, especially when I consider how closely your symptoms paralleled hers. I look forward to further exploring the resources on your site. Thank's for sharing. It is ALWAYS encouraging knowing that you are not alone in a battle.

Michael J McLaughlin
Calgary, Alberta, Canada
Referred By:
Kaye Bresso
Age:
30-39