What People Say...

June 9, 2009

Subject: Thank you for keeping all the work you do with the carcinoid foundation.

"Hi Monica- I just want to say a heartfelt thanks fromm all of us Australians who have NETS. Your Carciniod foundation has kept us sane and up to date with relevant information that has helped us and got some of our young doctors here hooked and now interested in treating NETS
So thank you. from Jen Mifsud in Australia."

June 8, 2009
Thank you for sharing the excellent recording of the CCF Carcinoid Nets symposium which was held last April  2009 at Mt. Sinai hospital. The reception was loud and clear. The symposium was very educating specially for carcinoid patient. Although the symposium and discussion was short, I learn  so many things regarding carcinoid. Hope to hear more in the future.
Vanesa

December 27, 2008
I will also send a small donation to the Carcinoid Cancer Foundation. Over the years I have
turned to their website many times for accurate information. Dr. Richard Warner and his wife Monica are responsible for the foundation and don't get nearly the praise they deserve for service to the carcinoid community.
Posted on ACOR by Gloria

December 27, 2008

I am so thankful to have found this website.
 It's a lonely place knowing that this is a very rare type of cancer. I am not ready to follow the recommendations from someone that is not familiar with this type of cancer. I would love to talk to anyone that is familiar with what I'm walking through.. whether it's a physician or patient. I would love to be part of 'the solution' in any way that I can help.
Thank you again for providing an informative website!!
Janice, Alabama

November 11, 2008
You have been a blessing to all who have needed information about this disease. pam

October 10, 2008

       "  ...the foundation’s website is amazing. Without it I would not have found a specialist nor attended the September ‘07 national conference which in turn inspired me to start a   support group… "

Suzi Garber, Support Leader, Pennsylvania
Read about and join the Philly Connection Click Here          

From: Mary Len Rees
Sent: Saturday, September 24, 2008 11:05 PM
To: carcinoid@optonline.net
Subject: Dr. Norton and Dr. Reuter

Dr. Jeffrey Norton at Stanford Medical Center took me from what four doctors in my home area deemed inoperable to completely free of the Carcinoid tumors.
Once my diagnosis was confirmed and upon your recommendation of doctors I chose to be in touch with Dr. Norton. (Primarily because Stanford is closer to me than Louisiana where the other doctors you recommended are located.) The first most encouraging thing that occurred was learning it would take only two weeks to be considered by Dr. Norton not months as I feared.  The process was very straight forward.  He only sees patients he believes have surgery as an option.  He is a very gentle, but firm doctor whose confidence is reassuring.  He is thorough in his examination of the situation and very clear about what the procedures will be and how important it is to do everything he has lined out. He makes it clear one does exactly what he lines out or choose not to be his patient.  When asked about how it was possible to go from "inoperable" to completely cancer free, he said it is knowing how to read the images on the scans.  I have learned Carcinoid is a rare cancer and it truly takes a specialist who knows not only the cancer but has the surgical skills to perform this miracle.  The image other doctors saw as inoperable was the metastatic tumor wrapped around the superior mesenteric artery; they believed it would be impossible to remove it.  Dr. Norton's belief which proved to be true was that the metastatic tumors were lymph nodes and could be removed without cutting the superior mesenteric artery.  This skilled surgeon removed the primary tumor in the small intestine carefully measuring in order to minimize the absorption problems that follow this type of surgery and then, removed all seven cancerous lymph nodes which were surrounding the artery.  During surgery he, also, did a complete examination of the liver to be sure no Carcinoid tumors were present, but he had previously explained to me what he would do if the disease had reached the liver.  I believe I went into surgery knowing exact y what to expect and came away with no surprises nor any unanswered questions.  I have utmost respect for Dr. Norton and highly recommend him.

Recently, I saw Dr. Cindy Reuter , Portland, OR, to learn about the nutritional things I can do since there is the absorption issue following intestinal surgery.  She is approachable, knowledgeable and very thorough.  Again, her understanding of Carcinoid issues is reassuring and will be helpful to any who have to deal with the symptoms caused by this cancer. 

Thank you so much for your assistance and pointing me in the direction of these wonderful professionals.    Sincerely, Mary Len Rees

Sent: Saturday, August 16, 2008 8:57 PM
Subject: RE: approval of Lu 177 in US

“Thank you for all you do to help keep patients informed of what is out there--if not for your website I wouldn't have known to search out Dr O'Do who sent me to Basel. We went to Norfolk, met patients  & docs there--I feel you all have given me a chance for a few more good years."

Sally Humphrey, Michigan

From: RICHARD SMITH [mailto:rosmith1943@yahoo.com]
Sent: Saturday, July 19, 2008 9:27 PM
To: carcinoid@optonline.net
Subject: Testimonial

When DX of Carcinoid Syndrome was made in May 2000, the journey began.  I had to know my enemy because my Oncologist didn't!  Luck would have me meet a oncology
professor at the University of Pennsylvania in November 2000.  (Carcinoid was his "hobby.")  He suggested an Octreoscan and Sandostatin.  He even guessed (correctly) that my cancer was twelve years old.  Then in December of 2000 I got a computer for the holiday and set forth in earnest to amass as much knowledge as I could.  My very first stop on the net was the Carcinoid Cancer Foundation.  I downloaded everything of relevance (150 pages at least.)  I spoke to Mrs Warner two or three times and found her empathetic and very helpful.  Having always been an optimist, I still went to the next level and have remained ever since.  Thanks to the foundation...I now had a foundation to build upon.  Knowledge and then optimism along with Sandostatin and Him have kept me on the high road to endure this pesky disease.  Now into my 20th year as a "noid," I am sincerely grateful for the foundations help.   
Richard Smith   rosmith1943@yahoo.com

August 1, 2008

Hi, My name is Everlyn and I am 26 years old. I was recently diagnosed with a Carcinoid in my lung and will be undergoing surgery in a couple of weeks.

I am so grateful that people have this website that explains (in detail) what the disease is and where to get help.

Thank you again
Everlyn

August 2, 2008

I am recovering from a right hemi-colectomy 2.5 weeks ago for what has been diagnosed as carcinoid tumor (termial illeum with 2 positive lymph nodes). Your website has been most helpful, along with my oncologist.
Thank You

Lee L.

Hi

I was a recently diagnosed sufferer of lung carcinoid, I'm very grateful for your site. I visit it regularly as I seek hope and an understanding of the disease.

Once again thank you for the support you provide for myself and so many others like me, around the world.

Regards
Richard McMaon

Hi

I'm behind in my mail, so I wanted to let you know I received the packages for patients and physicians, and many thanks for taking the time to get them together for me.  I'll see my onco on Aug. 3rd, and will discuss a support group meeting with him.

There's everything a patient new to a carcinoid support group could wish for as far as explanations, referrals, support and proper tests for this cancer.

And believe me, that's just what is needed here in El Paso.  There has to be more than half a dozen in a city of 700,000.

Thanks again, and I'll let you know how everything turns out.

Diane

I learned of Dr. Choti through the good people on this list and at www.carcinoid.org, so truly it saved my life to push my HMO to send me to him.  I cannot emphasize enough the necessity of getting to the RIGHT doctor rather than settling for what's available or has been assigned to you.

Thank you for being so informative. I have relied on your expertise so many times and you have always come through for me personally.

Thank you once again CCF staff. I I hope you know just how many lives you and the Carcinoid Cancer Foundation have touched, and what a positive impact you have made and continue to make every single day

What I wanted to say was that I know that CCF have done MUCH for the support groups and that your website content is SO valuable. As you compose your letter and your next newsletter, I think that you should consider highlighting the almost 40 years list of accomplishments. Commitment and passion are very important. 40 years show such dedication.

The word "cure" and the website for CFCF and their personal websites for fund-raising are enticing to many. But, as you've mentioned before, the "cure" is only one aspect. Before a cure, a diagnosis must occur. The general awareness and education and the perspectives for general public, patients, and medical community are SO WELL SERVED by CCF and its website.

I apologies 10 fold. I have been in Los Angeles with Dr Wolin ...got home tonight at 10:30 pm. I had not seen the link page. One of our board members has been doing it. OF COURSE CCF WAS TO BE LISTED AND AT THE TOP. I WILL GET IT CORRECTED IMMEDIATELY. I AM TERRIBLY SORRY!!!!  Please know Monica is not for your website and Dr Warner and you I KNOW I would not be here today

In closing, let me tell you how your organization has touched my life in an immeasurable way.  When I was out there in HI, staggered by my pain and the terrifying diagnosis, I found the Carcinoid Foundation on the computer, and it saved me from total despair.  Even though I realize I have a deadly, unremitting cancer, I found a form of hope there which has served me well throughout this process and I turn to your organization for information which I share with my Drs.  I am so grateful for the enormous contribution you and Dr Warner have made to this field.  You have my undying gratitude.

Gayle Zande

My name is Demetrios Tsatis.  My father was recently diagnosed with a carcinoid tumor in his small intestine.  Thankfully, the CAT Scan did not show any spreading of the cancer.  It was discovered during a routine colonoscopy and was therefore caught in the early stages.  My father is in the process of choosing a surgeon to remove the tumor.  

Prior to these recent events neither I nor my family had ever heard of carcinoid tumors.  We felt overwhelmed particularly since the tumor was classified as a rare disease (which immediately brings you to believe incurable).  The information provided by the Carcinoid Foundation was extremely helpful in setting our minds at ease.  I believe that by educating the public about carcinoid we raise the awareness and attract attention to a disease once thought rare.  

This experience with my father has placed things into perspective and has made me realize that volunteering my time for a worthy cause such as this is something I should make a part of my life.  I am in my final year of law school and hope to bring something valuable to the table.  I would like to participate in anyway I can.

I was happy to hear that you both are doing well.  I could never express the gratitude I have for both of you for the many years of loving care provided for my mother.  I don't think we would have been able to face it all without the confidence we had in Dr. Warner.  His knowledge was such a great source of comfort.  My mother loved and respected you both so very much. 

Hi everyone,

Monica. You are the rock upon which our North American Carcinoid-Nets Community has been built.
I know that you have been involved for a lifetime with the Carcinoid Cancer Foundation in New York, that, in fact, you actually are THE
Carcinoid Cancer Foundation. The Carcinoid Cancer Foundation's site was the one I turned to when I was first diagnosed. It has a wealth of information and links.
www.carcinoid.org is such an informative place to turn.

Maureen Coleman -Canada

Dear CCF staff,,
Thank you so much for your work at delivering to us the valuable link to the Philli conference transcripts. As a Canadian I was especially pleased to listen to Dr Reid's comments as well as the other specialists. How wonderful for us carcinoid patients to have this great informative piece of literature to listen to and learn from. How wonderful of you to take such an interest in your husband's and I believe your calling to assist our group of cancer patients. Thank you God for giving you such a calling. Please know how much you are appreciated and thought of for all you do. I'm sure there are many days you wonder why your are spending so much time and effort, but please know, your rewards will be waiting for you in heaven because I know for sure you are already an angel.
Kind thoughts to you and Dr Warner. I have learned a lot from the transcripts.

Colette Morrison

There is doctor who is one of the if not the Top Carcinoid Cancer specialists in the world,Although I never have seen this doctor myself,I hear many good reports from Carcinoid friends of mine about this doctor....and on occasion as with anything in life someone who has issues of some sort of not so good with his doctor I speak of.......

Friday as a attendee of the Carcinoid Conference,I was privileged to meet and talk with the doctor's wife ..............a lovely lady with a smile golden and true.yes her and her husband are pure and simple,just like me and you...................people trying to enjoy everyday of their life too...........

She took the time to say hi and more time to sit next to me to show me a couple of pictures she had taken of this bear..............in a relaxed setting with all the stress of being not only a loving wife but a supporter and defender if needed for her husband ...she as I said was just like me and you trying to live life too.........

I know some of us may not agree with the policies of the doctor and his staff,but if you talked to this sweet nice lady,you would realize she does in fact have a heart and does in fact care about us as Carcinoid patients...............she also cares and loves her husband who works many many hours a week ..trying in his way to help us who seek help from him...........

As I sat in the Restaurant with the window by the side walk..who should walk by ? These two lovers of life and loving husband and wife Dr Warner and his wife Monica. I watch them as they walked by and my thoughts were of love...................

I guess I just wanted to say to all,some times life is not what it seems,some times words get crossed,thoughts get crossed and emotions get high.............but for my brief time in Philly I was able to see much emotion,love compassion and support.................. and joy of life ...........

a doctor and his wife who have every right to live their life and enjoy everyday of their life the same as me and you............yes they are real people too.............just like me and you..........

some of us can't go to see Dr Warner and some of us can.........but just because some of is can't .........we should not be upset or stressed at them................

just two people in love walking by a window on a street in Philadelphia living life too.........just like me and you...............

Thanks Monica ..........my life is touched everyday by some thing or some one...............and for a few minutes on a Friday in Philadelphia..............My life was touched by a kind sweet beautiful lady named Monica................
Bear { living longer to make your day..........or someone's]

Why Education and Awareness is important

“I found Dr. Pommier's name on www.carcinoid.org   as a specialist.  I decided to see him so that I could take my  daughter to visit her Dad when I was there.  Dr. Pommier  is great
“Keep your chin up, and try adding in other meds, and ask your doc to  contact a noid doc or two -- by phone, or email -- putting important medical  inquiry in subject line.  And, explore the _www.carcinoid.org_
(http://www.carcinoid.org)  web site.”
 
“Attention:  Carcinoid Encyclopedia GLOSSARY is at http://www.carcinoid.org/pcf/glossary.shtml

This is THE best source of info on the internet... www.carcinoid.org “

Appreciations of information on WEB

March 3, 2006

Michele, there is a wonderful website, http://www.carcinoid.com, that can answer questions about carcinoid.
You will want to educate yourself as much as possible.

Date: Fri, 3 Mar 2006 19:55:47 EST

Subject: Re: Update on Surgery - long message for your comments

Carol:
That all sounds like great news. Have you checked the web site
_The Carcinoid Cancer Foundation, Inc._ (http://www.carcinoid.org/)
This will give you follow-up treatments guidelines.

2/25/2006

I learned of Dr. Choti through the good people on this list and at www.carcinoid.org, so truly it saved my life to push my HMO to send me to him. I cannot emphasize enough the necessity of getting to the RIGHT doctor rather than settling for what's available or has been assigned to you.
Thank you for being so informative. I have relied on your expertise so many times and you have always come through for me personally.
Thank you once again Monica. I hope you know just how many lives you and the Carcinoid Cancer Foundation have touched, and what a positive impact you have made and continue to make every single day.

Wow!
I had signed off the List serv. due to my own health issues and need for space but not before the current 'Not Just Another Day In The Hood"
current discussion had started.............

For a dude who is sure not cured and sure not going the right way in his illness issues,I was very very amazed at the mean,nasty,personal attack On Dr.And Mrs.. Warner and the CCF. Now when I say personal..using words like aliases and talk of former marriages? Where in the hell or why in the hell is that even important to the current discussion? As I have been off the list I'm not up on all that has been reported said etc..........I do know its down and down mean and nasty.....and for some one who knows of the help,support of the CCF and Dr.Warner and Monica..........Just amazed at it all..............is the house in order and up to code as its suppose to be? Just maybe not all the way..I don't Know ,but if not ..........is it for some cynical,law breaking,underhanded...try at whatever the accusations and insinuations are? Come on folks ..really do you think that?

A story of support.a few years ago on this listserv there was a son named Michael Mclanlly or close to that who came on this listserv Dad dying,no help as far as Medical with the regular Oncologist his Dad was seeing...........his dad was dying or so it sure seemed and if anyone here remembers Michael posts back then they were heart wrenching to say the
least.............long story short..Dad got to Dr Warner ann not only
lived another year or so.but Son and Dad had some beautiful times together.........why? Dr Richard Warner....................see at the end of the day ..for me personally I need someone who knows all about carcinoid and is willing to help out as Dr Warner and Monica have done time and time again..................are they perfect human beings? Are you? Are you
Mr.Brown? look this will all eventually come out in the wash but
..read my next post and for anyone who has been a Patient of Dr Warner ,anyone who thinks the CCF is a plus to us with this dreaded illness ............ read my next post........and ask yourself is this what you all wish and want?
I don't..I've never been to see Dr.Warner..but its not for any reason but my own...............................
To even the Blind eye this almost seems like a personal Vendetta against the CCF and the Warners...................that is my opinion and nothing Bill Brown or anyone else will change my thinking ..NOTHING !
Dann Freeman.

Sent: Sunday, September 13, 1998 9:37 PM
To: Webmaster
Subject: Re: Carcinoid Tumor

Thank you for the valuable information. Your organization is great. I hope to find the answers to my problem soon.
THANKS!
Joe Dooley

Sent: Saturday, August 01, 1998 2:08 AM
To: Webmaster
Subject: Re: Ref #3

Dear CCF Staff,
]
Thank you again for your helpfulness. It is so refreshing to feel like there
is something I can at least learn about. It has been so very frustrating over
the past couple of years, not to mention feeling unwell. Had it not been for
a good friend , I would not have known of your valuable resource. Thanks
again for your help to date.

Most appreciatively,
Cindy G.

Saturday, May 02, 1998 11:17 PM

Thank you for writing me back the other day and helping to put my mind
at ease. I am probably just in bad health and working hard to fix my
health to 100% healthy after college. I have now started to exercise
and work-out and eating more healthy fruits and vegetables and cutting
down on meat-products and eliminating junk food! I just wanted to thank
you for caring enough to send back an e-mail so quickly!!

Take care.
James

Sent: Thursday, March 19, 1998 12:34 PM
To: carcinoid.org
Subject: <no subject>

Thank you, thank you, thank you. My 11 year old son is being tested
for this disease. Hopefully he won't be diagnosed with this, but I
feel more prepared after reading about it. Thank you for all your
time in putting this page together and informing the layperson.

Grateful Mother

5-17-1998

Dear CCF Staff,

Having spoken with you yesterday I feel like we're finally on track. You
can't believe how much confusion there has been up until now! My mother,
has an appointment with Dr. Kvols July 1. She'll get there two days early
for a workup. Yolanda was teriific and what with the accolade from Ms.
Lupton that you forwarded we are all feeling more positive about this . . .
especially Mom! When last I checked, she was busy going through Susan
Anderson's personal web page and was going to drop her a line.

Thank you for all the good information and your support and candor
yesterday. I think you may be an angel.

I'll keep you posted!

Sincerely,
Randy Baker

Sent: Wednesday, May 27, 1998 8:36 AM
To: carcinoid.org
Subject: Thank-you

My message is a simple one, but one I know you will appreciate. Thank-you! What a wonderful gift you have made accessible to people with a carcinoid tumor and their families. My sister came across your site by accident while searching for information on the subject. I have informed oncology nurses at two major sites here in St. John's Newfoundland of your organisation.

Colleen Kelly, RN, MN

Sent: Monday, July 27, 1998 5:06 AM
To:webmaster
Subject: Re: A couple of references #1

Thank you so much for your assistance. The lack of information and assistance
at times has been most frustrating. Your information and knowledge was
refreshing and replenished my fading hope of finding my way out of this
illness.

I shall follow-up as soon as I am able.

Most sincerely.
CLGoodman

Sent: Wednesday, May 06, 1998 8:23 PM
To: Webmaster
Subject: Re: Diagnosis

Thank you for the reference to the article "spells without a cause". I
am currently in the second day of a 3 day octreotide scan which seems
okay so far. I have not had a "spell" since Feb. 25. I am grateful for
your help in indicating a direction for investigation. The web page is
excellent. It is so frustrating to have these attacks and not know
where to turn. Thanks for all you do. Ginny Allen

  Sent: Friday, March 05, 1999 2:16 PM
To: webmaster
Subject: Re: RE: 5 HIAA

You are so incredibly helpful.

Your information is tremendous and your website has been a godsend ever
since my mother's diagnosis two years ago.

Sent: Monday, September 14, 1998 5:11 PM
To: webmaster
Subject: thank you....

Thank you so much for returning my email and for answering my questions. I
really do appreciate it greatly. The information from the internet has been
so helpful. Thanks again, Kelly in Montana

Sent: Monday, August 17, 1998 10:33 PM
To:webmaster

My experience with
your office has been so different from my other experiences in the
medical world. It's been wonderful. Thanks.
Teresa

Sent: Sunday, May 10, 1998 1:35 PM
To: Webmaster
Subject: Re: Recommended treatment Carcinoid Cancer

Thank you very much for this information and especially your prompt reply.
I am a former R.N. with some forty years experience in the O.R. etc. and had
never heard of Carcinoid until now. I'm sure you can appreciate my
frustration.
Again, thank you so much.
Sincerely,
William Martin

Sent: Wednesday, February 25, 1998 1:48 AM
To:Webmaster
Subject: Thanks

I'll only take a minute of your time. I am 33 yrs old and at 31 had the upper
lobe of my left lung removed due to a carcinoid tumor. I have looked for
information since then with little success. Now that I am on the internet it
only took days before I found your organization. I want to thank you for the very complete description of the disease. Many of my questions were answered as I read your material. Thanks again for putting this easy to understand guide out on the web. There are many of us that appreciate your effort.

Martin Donnelly
Memphis TN

Sent: Wednesday, May 27, 1998 8:36 AM
To: carcinoid.org
Subject: Thank-you

My message is a simple one, but one I know you will appreciate.  Thank-you!  What a wonderful gift you have made accessible to people with a carcinoid tumor and their families.  My sister came across your site by accident while searching for information on the subject.  I have informed oncology nurses at two major sites here in St. John's Newfoundland of your organisation.

Colleen Kelly, RN, MN

Last Modified: Monday, 15-Mar-2010 02:13:06 EDT

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