Carcinoid Cancer Foundation
Carcinoid Cancer Foundation
  • 103
  • 227 208

Video

Music Heals
Views 8727 months ago
Coming of Age
Views 4798 months ago
The Gift of Life
Views 1K10 months ago
Help Support CCF
Views 53310 months ago
Test of Time
Views 15911 months ago
Carcinoid Syndrome and Diet
Views 20511 months ago
Late NET Talk 2018
Views 493Year ago
Fear and Hope
Views 973Year ago
NET Cancer Day 2014
Views 3595 years ago

Comments

  • Jan Bishop
    Jan Bishop 5 days ago

    What if the doctor said surgery is not a possibility. I have 1 tumor in my lung?

    • Jan Bishop
      Jan Bishop 5 days ago

      @Carcinoid Cancer Foundation yes, I live in overland Park ks. I would like to find a doctor that is close to me b/c I have osteoarthritis in both knees and have a hard time walking too much. If you could recommend someone I would appreciate it. I am going to a radiologist and he just has me do CT scans every 6 months. Thanks Jan Bishop 5900 W 67th TR. OP KS 66204. My ph is 913-515-4415

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 5 days ago

      Hi Jan, are you seeing a neuroendocrine cancer specialist? Sometimes it isn't possible to remove a tumor given the individual case (and only a physician/team of physicians can determine that) and sometimes doctors who are not NET specialists have a different perspective on what can be done surgically than a NET specialist. If you need help locating a specialist, please let us know. Every person with NETs is different and treatment options vary.

  • Carlos Ibañez Vignolo

    Hello, My case: diagnosed in MEN 1 (PTH = 93) + 10 mm Pancreatic mucinous cyst (VIP = 55/ glucose pool = 42) + 5 mm left lung nodule + yeyunal angiodisplasia + ileal nodule + cervical and lumbosacral stenosis and legs nocturnal pain. Since dec 2016 started with 20 mg Sandostatin LAR. Now 60 mg. FSH = 33 (note: taking 1 mg anastrozol

    • Carlos Ibañez Vignolo
      Carlos Ibañez Vignolo 2 months ago

      ...VIP=45, glucose is 72. Fdg petscan CT are negative. Right Colon adenocarcinoma (hemicolectomised set 2011 intususept hepatic angle) T3 NoMo infiltrated thru fat (T4?) biopsy was Ck 20 + / Ck 7 - / cdx 2 + focal difuse all other NET IHC negative. Also MLH1 +, MSH2 -, MSH6+ (MSI-H got me Lynch syndrome). I can't find tumor, no Ga 68 in Lima Perú Please send me a comment. Best Regards

  • kimisilv
    kimisilv 2 months ago

    My father was diagnosed in September 2013 and passed away December 2014. It is a very misunderstood cancer #Zebra I can’t imagine the amount of years he lived with this (undiagnosed) Please continue to spread the word🙏🏽

  • Tyler Sudden II
    Tyler Sudden II 2 months ago

    Very misunderstood cancer. In fact folks still don't know this is what Steve Jobs had and Aretha too. Diagnosed 2 years ago at Age 43. Fox Chase C.C. in Philly nailed it right away with my regular Penn doctor. I am Stage IV since it moved to my liver and that's what made the illness front and center. I thought I had IBS or kidney stones. I got liver re-sectioned (80%) and then discovered it was originating from my pancreas. I then had a partial Whipple. I declined radiation to get a very small inoperable tumor. I am just getting my monthly injection of the somatostatin .

    • Jairo Palacio
      Jairo Palacio Month ago

      Tyler...first I hope you are ok ...and now let me tell you about the DOCTOR of all DOCTOR S..His name is JESUS CHRIST he die for you and I and the whole world acts 2:38 says repent and be baptized GOD loves you pray and ask him for forgiveness do Good in life for now on.....I'm 40 years old and I to was diagnosed with the same illness....but we gotta have faith and JESUS CHRIST he's the ONLY ONE that can cure us and safe us from death and give us eternal LIFE..I pray for you and in the name of JESUS CHRIST we are going to be heal....

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 2 months ago

      Hi Tyler, we absolutely agree about neuroendocrine cancer being misunderstood and the ongoing need to educate people diagnosed with NETs, the general medical community and the public. Many people continue to try to explain that Steve Jobs and Aretha Franklin had pancreatic neuroendocrine cancer, not the more commonly known aggressive pancreatic cancer. Education and awareness are among the 4 pillars of CCF's mission and we will work tirelessly, as the foundation has for over 50 years, to make sure that people understand neuroendocrine cancer. We hope you are doing well and appreciate your support very much.

  • Jairo Palacio
    Jairo Palacio 2 months ago

    May GOD bless all ....cant believe that we are in the year 2019 about to go into 2020 and there's nothing for this type of cancer and for all the other cancer......but lucky for us we have Gid hes the ultimate DOCTOR pray to God and ask him to help you and the Name of hes Son Jesus Christ. and believe and everything is possible thru him amen... Jesus Christ our healer.....🙏🏽❤

  • Fabulusdiva4mga
    Fabulusdiva4mga 3 months ago

    I was diagnosed may 29th 2019...The ambulance driver told me the hospital approved my insurance...After being in the hospital for 11 days I get the news I never was approved....My life now is trying to deal with this disease w/o insurance and the doctor bills that are still coming ...#THANKYOUGODFORMYLIFE🙏🙏

    • Jairo Palacio
      Jairo Palacio 2 months ago

      God is good..you're going to be OK trust in God and let's seek for HIM more HE'S always been there....we are the one's away from HIM....I pray for and the Name of JESUS CHRIST that he will you strength. GOD bless you and you're family

  • Betty Fulton
    Betty Fulton 4 months ago

    Thank you for sharing your story. It's so inspiring and you're living your best life.

  • Jonathan Ham
    Jonathan Ham 4 months ago

    So good! Preach! Yes to forgetfulness. Yes to anxiety. Yes to being fearful (but not letting it rule you/me). Yes to so many things in this video. Well done from a fellow zebra

  • Sari M
    Sari M 4 months ago

    Does anybody know how I could I get in touch with Dr Warner?

  • gaurav bajaj
    gaurav bajaj 5 months ago

    Wow, your story is very beautiful and it motivates people who are fighting with Carcinoid . I wish a health life for you and your family!

  • NannyFitz68
    NannyFitz68 5 months ago

    Beautiful. I was diagnosed in 2011, still fighting. My husband just left me for a newer, better model..after 26 years of marriage...but you’ve got a wonderful wife who fights with you!! That’s wonderful. I’m still grateful for each day.

  • Woody Woodlstein
    Woody Woodlstein 5 months ago

    Amazing tip Breathe through a straw. And I’ll now look up what that at home therapy entails. And start living it. Before I find out I have something like this. Very well done video here. Very thoughtful

  • Elaine Reid
    Elaine Reid 6 months ago

    Thank you for the clarity of the symptoms of carcinoid; they are many times too vague in the "information well" on the internet!!

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 6 months ago

      Hi Elaine, thank you so much for your kind words. Hope you can join us for our Facebook Live event with Richard R.P. Warner, MD presenting on Carcinoid Syndrome and Serotonin on Friday, April 19 at 1 pm EST on our Facebook page, facebook.com/Carcinoid/. You can post non-case specific questions for Dr. Warner prior to and during the event. And if you can't join us on April 19th, please watch it at your convenience!

  • Anitta Barker
    Anitta Barker 6 months ago

    thats what i have. didnt know why i hurt so bad in my stomach. i have the cancer in my small intestent.. and 3 leasions in my liver. taking standostaten shots. to help me..i found out in Nov 2017.. im not giving up and love music i go to Merkey Cancer Center in Lexington Ky

  • J I
    J I 6 months ago

    I had an operation last month and they removed the carcinoid tumor it was in the upper lobe of the left lung and i thank god we discovered it early

  • kevin go down to the prelims lee

    How does music help heal carcinoid

    • Tom Wilson
      Tom Wilson 29 days ago

      I think relaxation and meditation is soothing. Anything that can set your mind free is helpful. Stress as we all know is to be avoided.

  • SantaClaus HawkeyeNJ
    SantaClaus HawkeyeNJ 7 months ago

    *_Dr Justina Deitz is the BEST of the BEST!_*

  • Michael A Lang
    Michael A Lang 7 months ago

    Touching and beautiful portrait… absolutely affecting and communicative… sending you hope… and total appreciation.

  • Latasha Coleman
    Latasha Coleman 8 months ago

    I have stage 4 Neuroendocrine and I'm been stable for 7 months now. (thank god)

  • Frank Vastola
    Frank Vastola 8 months ago

    Never give up. LIVE ON fellow zebra.

  • Robert Gable
    Robert Gable 8 months ago

    After being sick for a long time, in 2010 they figured it out. Three surgerys later i"m still here! Hang there!

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 8 months ago

      Hi Robert, we're so glad the doctors figured it out. Hope you are doing well. Thanks for being here and sharing your journey.

  • steph
    steph 8 months ago

    Can chromogranin A fluctuat with cancer

  • chadneyland
    chadneyland 8 months ago

    This is a great video to share with those wanting a general explanation. Thank you!

  • TanTanTheMan
    TanTanTheMan 9 months ago

    This is my grandma, find her in my video!! Love her

    • TanTanTheMan
      TanTanTheMan 9 months ago

      Xochi has passed, but her love and aura lives on trough my grandma. I cannot explain how much my family appreciated her help, and her wisdom through this.

  • WhereAreTheTrains DotCom

    I'm lucky to have a wife just like yours. If it wasn't for her, I wouldn't still be here as a survivor of Carcinoid. Good luck to both of you.

  • ChronicGlamour
    ChronicGlamour 9 months ago

    This is incredible that both of you have this. Crazy! Such a lovely video that you both share this. Can I ask did any of you have problems with your thyroid or parathyroids before your diagnosis?

  • Cynthia Smith
    Cynthia Smith 10 months ago

    R.I.P. Friend

    • Rain Bennett
      Rain Bennett 9 months ago

      @Carcinoid Cancer Foundation what a kind, loving man and gentle soul. I'm happy I got the chance to meet him. He and his wife Sheila treated me like family.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 10 months ago

      It was with great sadness that we learned of the passing of Mack Caudill on December 18, 2018. We will miss him very much, a huge loss for the NET community.

  • Nick Musselle
    Nick Musselle 10 months ago

    Great video, gives me hope having metastatic cancer

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 10 months ago

      There is always hope, Nick! Tremendous advances are being made in imaging and treatments for neuroendocrine cancer and we all look to the day there will be a cure.

  • Nick Musselle
    Nick Musselle 10 months ago

    wow, God bless you. that was difficult for you to make, difficult to watch. i have had my lung out too, and its come back in the other lung. so i enjoy every day too.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 10 months ago

      Thanks so much for your support, Nick. If there's any information we can share with you, please let us know.

  • Charles Murphy
    Charles Murphy 10 months ago

    What a wonderful and inspirational story...

  • Sharon Larsen
    Sharon Larsen 11 months ago

    Where is the song?

    • Sharon Larsen
      Sharon Larsen 11 months ago

      @Carcinoid Cancer Foundation Thank you!!!

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 11 months ago

      Here's a link, bit.ly/GiveMePeaceMusic. You can also hear the song in the link above and read more about Giovanna and Lettrice. It's an absolutely beautiful song!

  • Jeanie Bender
    Jeanie Bender 11 months ago

    Wonderful ...really spoke to my heart. Thank you and God bless you! Stay Zebra Strong!

  • A rotina de uma dona de casa feliz

    Que pena nao tem como traduzir,vc tem um tumor neuroendocrino?

  • Charles Murphy
    Charles Murphy Year ago

    Love conquers all!

  • wendy Jones
    wendy Jones Year ago

    So - did she have the surgery to remove the tumor or not? This video is ambiguous at best. It only focuses on the emotional support, not on the actions taken to resolve the problem, which in this case, is the removal of the (primary?) NET tumor. More information please - this video is lacking.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Wendy, thanks for watching our 50th anniversary videos series. This series is about the human spirit and stories of hope rather than an informational series like others we have done which focus on NETs in general, treatment options, and specifics about NETs, such as nutrition. Our intention with this series was to celebrate our 50th anniversary with videos that will endure as a beacon of hope for all diagnosed with neuroendocrine tumors.

  • Doug Kelly
    Doug Kelly Year ago

    Xochi left us on monday. But still alive in ower hearts

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      It was was deep sorrow that we learned of Xochi's passing. Her ever-present smile and exuberance will be with us every time we think of Xochi. She was an amazing woman and will be missed very much. Our condolences to Xochi's beloved husband, Frank, and to all of her family and friends. RIP sweet Xochi.

  • Mabel Rodríguez

    I can see these two ladies like a gift one for the other.

  • Lois Dickson
    Lois Dickson Year ago

    I was diagnosed 3 years with NETS while going through exam for a possible heart attack. Heart is fine - it was the NETS sluffing off their "skin". I have none of the Nets syndrome and have no aches or pains. I am 81 years old and in good health for my age. Four months ago, after a discussion with my oncologist, a leading oncologist at San Diego University , and my family, I opted to try a new drug AFINITOR! After being on AFINITOR for almost 3 months, I ended up in the hospital for 6 days with pneomonitis! The drug destroyed some of my lung function and I am on oxygen at night. I lost 20 pounds due to complete lack of taste for any food (taste came back once off AFINITOR) PLUS, an MRI showed a small growth of some of the NETS! Possibly AFINITOR could help some one else but I will NEVER try another drug! I take a monthly Laneotide injection and it seems to keep growth small or no change.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      We're so sorry you had the experience you did with Afinitor, Lois. Unfortunately, not every drug works well for everyone and clearly your experience was not good. But we do know other people with NETs for whom Afinitor has had a wonderful outcome. We're glad to learn that lanreotide is helping you. Thanks for sharing your journey and for your support.

  • Christin Giordano

    We had an extra 12 years with my dad because of Dr. Warner. I’m now a physician today in part because of the kind of physician he was and continues to be- kind, innovative, selfless, hopeful. He pushes the limits of what is possible all while delivering compassionate care.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Christin, thank you so much for your wonderful comments about Dr. Warner and the difference he made for your dad and your family. We've shared your note with Dr. Warner -- please know how special your kind words are for him!

  • Marilyn Labendz
    Marilyn Labendz Year ago

    My husband had 5 extra years because of Dr. Warner. Thank you so much.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Marilyn, what a wonderful tribute to Dr. Warner. It means a lot to him to know that he helped give families more years together.

  • Barbara Hertz
    Barbara Hertz Year ago

    We are now more hopeful thanks to Y-90 and Lu - 177...My dad , Dr Saul Hertz who discovered the medical uses of the first Theran(g)ostic- Radioiodine, must be smiling from heaven.Saul Hertz MD - Home saulhertzmd.com Saul Hertz passed at 45 years old from a sudden death heart attack as documented by an autopsy. He leaves an enduring legacy impacting countless generations of ...

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      We agree, Barbara -- there is so much to be hopeful for when living with NETs today. The new treatment and imaging advances play a huge role in the care of NET patients, impacting both quality of life and length of life. Dr. Hertz was a pioneer in theranostics, leading the way for today's treatments. We are very grateful for his research, dedication, and vision!

  • Misako Yoke
    Misako Yoke Year ago

    Oh my, this is amazing! Truly, truly admire Xochi and Ellen!! Love, love, love this episode. Thank you for sharing.

  • Doug Kelly
    Doug Kelly Year ago

    Just subscribed to your channel. Looking forward to your next video.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Doug, thanks for subscribing to our channel. CCF celebrated its 50th anniversary in March 2018 and to recognize this milestone we are doing a series of monthly videos throughout our anniversary year. Stay tuned for the next one coming in July!

  • David Dad And Mom

    Hey Xochi, I just watched your story and WOW, God brought you guys together!!!! Ellen & Xochi God Bless you guys :) ~ Ed , Lisa and David :)

  • Doug Kelly
    Doug Kelly Year ago

    Having a unbreakable spirit gives other people strength and hope. My prayers are with you.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Thanks, Doug, for being here and watching the video. Xochi and Ellen give hope to all who learn about their friendship and how they are an incredible support system for each other.

  • Nick Musselle
    Nick Musselle Year ago

    truly an inspirational video, I have had one lung lobe out and now I have three more neuroendocrine tumours in my lungs, so inoperable. but your story gives me hope. thank you

  • Donna Claudon
    Donna Claudon Year ago

    This is a wonderful video ! I also was diagnosed with neuroendocrine tumors in 2011. I've had two major surgeries the last one in 2013. I'm allergic to sandostatin and unable to have the shots. I had a gallium 68 in March and it revealed more tumors. I started PRRT treatment in April. That was also not such a good experience. This is a rare cancer and I feel like a rare bird. I wasn't having such a good morning and decided to look at my USclip people that I follow and this was the first video that popped up. Thank you for posting this. It's wonderful to have a close friend who is going through the same thing. We know how much we need our support. I hope this makes sense. Thanks again!

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Thanks so much for your kind words, Donna. We hope you have a better experience with the subsequent treatments. Support is invaluable when living with NETs. You are always welcome to call us, 888-722-3132, Eastern Time, if we can be of help in any way. We're glad you saw this video today!

  • Dolly Sumrow
    Dolly Sumrow Year ago

    Great to know about.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Dolly, we also have a program coming up that's a free online event on June 20 that might be of interest, www.carcinoid.org/2018/06/05/patient-caregiver-education-on-carcinoid-syndrome-talking-to-your-doctor-about-symptoms-diet-and-treatment/. If you can't attend during the live event, you can register and watch it when it's archived.

  • kimisilv
    kimisilv Year ago

    So much love to you! Enjoy all of your precious moments. Wishing you the best health possible

  • Janet Patterson
    Janet Patterson Year ago

    Susan gave me hope when my husband was diagnosed with carcinoid in 1995. I followed her journey for many years and am sad to see that her life here is over. She organized an online discussion room those many years ago when the internet was unreliable and there were few ways to manage a carcinoid diagnosis. My heart is with you, Howard, and I am sure that Susan continues to spread her sunshine.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Janet, what a lovely memory of Susan. She truly was an extraordinary, giving woman. We all miss her.

  • Cy Ball
    Cy Ball Year ago

    I had started meditation just 9 months before my NET diagnosis. It helped to deal with the diagnosis, the treatments and the fear and pain. Two years ago, I started yoga to help deal with non-cancer related back problems. It has also helped to deal with NETs. Thanks Stacie and Carcinoid Cancer Foundation.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Cy, thanks for sharing how yoga has helped you deal with life with a NET diagnosis. Hope you are doing well.

  • James Tierney
    James Tierney Year ago

    Truly inspiring to All NET patients! I was Dx in 2014 tail of pancreas. First lanreotide injection today 4/18/18. Thank you Sunny, how appreciate (☀️) is your name ! Blessings to you and your loving husband. I’m sorry for his and your families loss. Thanks for your uplifting messages and good fight! May you rest until we meet again ☘️

    • Joshua Douglass
      Joshua Douglass Year ago

      James Tierney Hi James, Carcinoid is still as rare as it was back at the turn of the century when two tumors blocked my small intestine causing great pain. They did a CT scan that showed Nothing an hour before they opened me up and removed two Carcinoid tumors. I still had pain and symptoms and the DR's said it was anything but what it really was. The new Gallium 68 CT/pet scan found the little bastards invading my Mesentary? Find a Dr. Who understands the Carcinoid Syndrome and study yourself. You must become your own advocate and you will live longer.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Thank you for your kind words, James. Susan was a wonderful woman who inspired all in the NET community whose lives she touched. We miss her and will always hold her in our hearts.

  • Toufeq islam
    Toufeq islam Year ago

    nc

  • Dr.vikas thorat
    Dr.vikas thorat Year ago

    Can H pyolry convert into neuroendocrin tumor?

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Dr. Vikas Thorat, here are some articles about H. pylori that might shed some light on your question, www.ncbi.nlm.nih.gov/pmc/articles/PMC3132260/, www.ncbi.nlm.nih.gov/pmc/articles/PMC5422415/, and www.ncbi.nlm.nih.gov/pmc/articles/PMC4974581/.

  • Dolly Sumrow
    Dolly Sumrow Year ago

    Thank you Dr. Warner for all your kind treatment.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Dolly, Dr. Warner is truly an amazing physician, as well as an extremely kind and caring individual.

  • Joshua Douglass
    Joshua Douglass Year ago

    I can't believe there are NO comments on this page? Susan Anderson is the 1st personal story I found online way back in October 2000. I never made it out to Jam at her bluegrass nite or talk Astronomy with her husband,but I will never forget the help she was to me in some dark days that kept me going. RIP you are a Saint in my eyes Thank You Susan You will be missed but I know we will meet again

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Joshua, thank you for sharing how Susan made such a difference for you. She made an enormous difference for so many in the NET community, especially with her website which was the first NET patient website, and with her many contacts, by phone and email, that touched the lives of NET patients throughout the world.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Joshua, many thanks for sharing how much Susan Anderson meant to you. She truly was an amazing woman!

  • Kleine Betty
    Kleine Betty Year ago

    Almost 3 years ago i had a NET Appendix carcinoid. I try to aducate my Self about it but cant find any specific Video about it 😞 Is there any chance that you could make a Video about it? Im sorry if there are any mistakes in my writing im from Germany. Best regards Sabrina

  • Joshua Douglass
    Joshua Douglass Year ago

    I was diagnosed with Carcinoid Syndrome on May 10,2000. I had two almost 4cm Carcinoid tumors removed by small bowel resection . My Chromogranin A is very High and Serum Saratonin is also High and seems to fluctuate up and down ?? However I have had 3 allergic reactions when I tried Sando statin or anything along those lines caused a Bad reaction from another Auto immune disease Hidradinitis Suprativa? I have had it since I was a guinea pig for a new treatment for the Hidradenitis way back in the dark ages of medicine . So after Imodium poisoning and every other thing available to stop the Diarehea The Moffit Cancer center,Dr.Larry Kvolz put me on Opium Tincture and a few drops of the fowl stuff a day is a small price to pay for a normal bowel movment, but a Big Price in US Currency. So my point after all this is "Does anybody out there who has suffered with the Carcinoid syndrome even after Tumors being surgically removed and they have not found "The Primary" as they call it. The Big or so small like a grain of rice ,and this one little tumor directs all the other ones . Now since this new Opioid "War on Patients"I have to confirm my diagnosis again and again because My Oncologist just said today; "I don't believe he has Carcinoid Syndrome,this after treating me for it for the passed 8 year This old fashioned med has saved me from an early grave. and short of a Colostomy bag? When they cut off access to the Opium Tincture I feel this will be the end of me. Thanx A Patient

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Joshua, it certainly has been a rough road without being able to take Sandostatin. You might want to discuss with your doctor trying lanreotide (Somatuline Depot) as this was approved by the FDA a few years ago. It is also a monthly injection but it has a different formulation and it is subcutaneous rather than in the muscle. Dr. Rodney Pommier is a NET expert surgeon in Portland, Oregon. Here's his presentation on the importance of finding the primary tumor, which sometimes doctors can find during exploratory surgery: usclip.net/video/wsahfdsJwFA/video.html. Also, there's a new nuclear imaging scan that is now the gold standard of testing for neuronendocrine tumors called the Gallium-68 PET/CT with NETSPOT. It might show something that the octreoscan did not previously, if you had that test, as it can detect smaller tumors in more high definition. Please give us a call, 888-722-3132, EST, if we can share more information with you.

  • Terri Jennings
    Terri Jennings Year ago

    Great video! This might be what is wrong with me.. sounds so familiar!

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Terri, here's some additional information that we hope is helpful: www.carcinoid.org/wp-content/uploads/2015/07/NET-Cancer-inforgraphic-Nov-2016.pdf. You are always welcome to give us a call if you'd like to chat, 888-722-3132, EST.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation Year ago

      Hi Terri, thanks for your kind words about the Balancing Act TV show. Here's an infographic that might be helfpul for you: www.carcinoid.org/wp-content/uploads/2015/07/NET-Cancer-inforgraphic-Nov-2016.pdf. Please give us a call if we can be of help in any way.

  • Betty Fulton
    Betty Fulton 2 years ago

    This is so helpful. Thank you.

  • Dave Mihalovic
    Dave Mihalovic 2 years ago

    ++

  • Lisa Clancy
    Lisa Clancy 2 years ago

    Wonderfully informative, Dr. Liu!! You are amazing!!

  • Eco Shaikh
    Eco Shaikh 2 years ago

    Thanks

  • Zainab Abdulkareem
    Zainab Abdulkareem 2 years ago

    Thanx for the valuable informations and the supportive words .

  • Carl Blomberg
    Carl Blomberg 3 years ago

    A great surgeon and friend

  • kimisilv
    kimisilv 3 years ago

    My father died from NEC 2 years and 2 months from his diagnosis. I wish he had the team of doctors you referenced as protocol for his cancer treatment. In his last months, he was treated by Moffett (Tampa) and then we flew him to TX for unconventional Nuclear treatment (being done in Finland, Germany and Australia). His body/liver function was so poor, he couldn't withstand treatment. He died 5 days after TX visit. His decline in the last two months was dramatic. Do you do research on expired patients cases?

  • Visitor Visitor
    Visitor Visitor 3 years ago

    Excellent presentation. Thank you!

  • Visitor Visitor
    Visitor Visitor 3 years ago

    Very informative! Thank you, Doctor! Too bad, it got frozen at the end.

  • FATIMA AZA
    FATIMA AZA 3 years ago

    informative and relevant...

    • Woody Woodlstein
      Woody Woodlstein 5 months ago

      Carcinoid Cancer Foundation the Tumors essentially start acting like organs themselves is that accurate ? Causing the syndrome potentially A very specialized cancer indeed. Our bodies sure have lots of tricks they can play on us.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 3 years ago

      +FATIMA AZA , we really appreciate your feedback! Glad you found the video helpful.

  • daytriker
    daytriker 3 years ago

    I am not sure if this is useful or relevant but please keep it mind if you come across a patient with upper back trouble. I was finally diagnosed with a 6mm carcinoid tumour in my transverse colon. I had been suffering with back pain in my 6-7 thoracic area for 45 years. No amount of Physical Therapy, Chiropractic, Meditation, Diet Change etc, gave significant relief. It was finally determined I had a 6mm stage 3, non malignant tumour that had started to spread & I had 30cm of my colon removed. My oncology surgeon suspected that the tumour was pumping hormones into my system causing my back pain. After the surgery I had 6 months of pain free living then the pain started up again but to a much lesser degree. 4 years later I am currently undergoing evaluation for other bowel complications. If someone you know has unexplainable back trouble after all other possible causes have been explored please, check them for neuro- endocrine problems instead of passing them off as not treatable.

  • Ronny Allan
    Ronny Allan 3 years ago

    loving this guy's knowledge and enthusiasm!

  • south South
    south South 4 years ago

    I had a 6mm carcinoid removed very early...but still feel depressed due to being scared for having more.....I have a small family and not to many friends around....

  • Lois Kathleen Beall Weisman

    Dr. Wolin is the best!

  • south South
    south South 4 years ago

    Dr. Irani I had a 6mm sessile polyp on colonoscopy came back as carcinoid tumor and my G.I. Specialist said it was benign....Can this be true and what other steps should I take???

  • sammy rivera
    sammy rivera 4 years ago

    Try, TURMERIC IT KILLS CANCER, LOOK UP TURMERIC

  • Tom Wilson
    Tom Wilson 4 years ago

    Is there any update to managing Carcinoid Crisis beyond what is in this video and Dr. Pommiers study?

  • Diana Powell
    Diana Powell 4 years ago

    I had two malignant carcinoid tumors removed from my small intestine and one from my lung. My first oncologist felt I had no hope for survival and decided all future visits only needed to be with his nurse and not him. Made me feel devalued as a human being. Have a new oncologist who thinks differently. One year and two cat scans later no signs of any cancer. Very happy. I've heard that coconut oil and pure frankincense oil both can aid in killing cancer. Even though I have no more signs of carcinoid tumors I have been taking both ..won't hurt. What's your thoughts on these oils and their effects?

  • Tom Wilson
    Tom Wilson 4 years ago

    My thanks to Dr. Woltering. I called him this morning with several specific questions about Octreotide and he was kind enough to answer my questions even though he was boarding a plane. Marianne below used the word 'selfless' - I agree.

    • Carcinoid Cancer Foundation
      Carcinoid Cancer Foundation 4 years ago

      @Tom Wilson Hi Tom, Dr. Woltering is both an extraordinary physician and man. Marianne said it best! Glad he was able to help you.

  • Tom Wilson
    Tom Wilson 4 years ago

    Well spoken.

  • gentleocean
    gentleocean 4 years ago

    Thank you Dr Liu!! You're the best! 😊

  • Neal McCracken
    Neal McCracken 4 years ago

    I wish I found him sooner, but he saved my life as well. Tumor was wrapped around mesenteric artery cutting off blood to my intestines. The local surgeon said the same thing Dr. Wang mentioned in video, they couldn't cut it out without risking damage to my artery. It took all day surgery, but Dr. Wang got it. If you are considering surgery with Dr. Wang DO IT! Like he said, don't wait for something to happen and then deal with it. I still have issues, and getting PRRT soon, but at least I'm still alive to keep up the fight. I didn't find Dr. Wang soon enough, don't make the mistake of waiting after you found him.

  • tanya booth
    tanya booth 4 years ago

    Jill my deepest sympathy go to you and your family. I had my surgery almost 5 weeks ago. It has been by far the hardest surgery I've ever had to recover from. I found out after, through my pathology report that my cancer has metastasis to my lymph nodes. You and your family will be in my prayers.

  • Mystic Artist
    Mystic Artist 4 years ago

    I would like to know the chances of her having passed this on to the babies.....

  • Holly Ferguson
    Holly Ferguson 4 years ago

    Would this type of cancer be emotionally base because?

  • Jill Cooper
    Jill Cooper 4 years ago

    My sister died 6 wks after diagnosed with this Cancer. the trial drug didn't work for her.she had to have surgery due to a blocked intestine and did not survive . They removed half her colon.

  • kimisilv
    kimisilv 4 years ago

    He is a pioneer surgeon from what I have seen (and a comic). This was both informative and entertaining.

  • kimisilv
    kimisilv 4 years ago

    You were all most gracious to report so much of what you have learned (all the while making me smile). I am appreciative of your input and the fact that you posted this on line. I am working hard to learn as much as I can for my father who suffers through this disease.

  • Kathy Benton
    Kathy Benton 5 years ago

    I couldn't agree more. Going to a conference really is invaluable. It can make a huge difference, as you will be getting information from the leading experts in the country and the world on this uncommon, misunderstood set of diseases. You will have a huge advantage in getting referred for the the best treatment, and you will be talking with the experts and networking with other patients and caregivers/loved ones, something that is not easy to do in any other setting. This disease requires that the patient and/or his/her family seek out information and advocate themselves. Chances are, unless your doctor is a NET specialist, your doctor doesn't know as much as you will after you attend one of these conferences... The conferences are upbeat and positive, well-done in every way.

  • MCOLGIN
    MCOLGIN 5 years ago

    I know Dr. Wang personally. He is a great doctor, and an even better person.

  • Josh Carmack
    Josh Carmack 5 years ago

    This man saved my life on March 19th of 2002!

  • wenkerr1
    wenkerr1 5 years ago

    So thankful for doctors like this! Only wish that I had access to them.

  • Carcinoid Cancer Foundation

    Hi Chloe Girl, we're so sorry to learn of your mom's passing from carcinoid. Her diagnoses of Crohn's and Irritable Bowel Syndrome are two of the most common misdiagnoses for carcinoid. This is why the Carcinoid Cancer Foundation is so deeply committed to raising awareness of these rare cancers both in the medical community and the general public. Please know we will work tirelessly to ensure that carcinoid is a disease that people recognize everywhere in the world.

  • Obsidianred
    Obsidianred 5 years ago

    Firstly Anna, i am truly sorry you have had to go through this and still lose your daughter. I was excited when I first saw this, through a Facebook link, as I am sure you all know it's so hard to get good information on this. Unfortunately I am no wiser than I was, there is nothing here that can't be found with a first Google search on the subject. I agree with Anna, why are we not given facts and figures, there must be some data out there that isn't 20 years old. I have Carcinoid Syndrome, primary not found and already had a liver resection, through 3 ops and lots of treatments (for which I am extremely thankful) in the last 2 years and still I have not found anyone who will sit down and talk in detail with me. I suspect that only one of my doctors actually has this information and he is an uncommunicative type of person so that's that! Apparently my survival depends on luck - as in where it turns up next time. I could go on and on but you all know the score. So now I just have a bad taste in my mouth after watching a so called expert doctor (blue suit) laughing at what are in fact horrendous and debilitating symptoms. Nice! Don't mind laughing with my friends but that is just tastless.

    • Robert Yorke
      Robert Yorke 4 years ago

      @Obsidianred : I definitely agree with you...watching this doctor laughing at the prospect of someone frantically trying to cope with a horrendous and maybe inescapable effect is unsettling...

  • Abby Normal
    Abby Normal 5 years ago

    wonderful inspiring video <3

  • pat risch
    pat risch 5 years ago

    What a wonderful conference. Dr Pommmier is wonderful. This showed me slouch, and explained in the way we as patients, can understand. I found tis so informative. So much to learn with this cancer. Loved it. I'm a pancreatic neuroendicrin cancer patient, spread to the liver. Removed the tail and spleen. Had liver resection and so far so good. I'm in my seventh year

  • ronald pettis
    ronald pettis 6 years ago

    call me if youre serious about healing the sick. i am YESHUA. 575 386 9899.

  • Nancy Kimbrel
    Nancy Kimbrel 6 years ago

    I appreciate this information but is there any way to add closed captioning?

  • Edwin Bellinger
    Edwin Bellinger 6 years ago

    Those of us who have had a whipple procedure require digestive enzyme's and better off with a low carb/paleo way of eating due to becomeing diabetic. I have survived over 10 years going that way.

  • tfox1964
    tfox1964 6 years ago

    Thanks for this resource - I am a NET host diagnosed in Jan this year and none of this has been discussed with me - I have a high grade metastasized small cell undifferentiated carcinoma and am seeking all the info I can find about this nasty little c ...

  • Carcinoid Cancer Foundation

    Dan, thanks so much for sharing about your mom. Dr. Liu is truly an extraordinary physician!