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Our daughter had experimental PRRT in 2017 which successfully reduced/killed all of her tumors. She had surgery in 2018 to remove her spleen, gall bladder and 2/3rds of her pancreas. All liver turmoil were dead. She has been on Sandostatin since 2017. She was doing well until she was advised to take the Covid vaccine and booster. Her cancer returned with many, many more tumors. She just had her 3rd PRRT(experimental) today. Some of the tumors are shrinking.

GO MELVIN GO!!!!!

هل المركز يمكن ان يساعدنا زوجتى تعانى من نقائل بالكبد من ورم صممى عصبى كان فى ديل البنكرياس وتم استئصالة لكن النقائل تزيد وتنتشر NET وماهى الاراء حول PRRT

How fast do neuroendocrine tumors grow? I have MEN 1 and a glucagonoma in pancreas as well as neuroendocrine tumors in lung. I am going to have a lung biopsy in a few weeks.

SUPER!❤❤❤

A question was asked ‘why the rise in net tumours?’ Sometimes I wonder if it is all the chemicals people are exposed to. I worked in a botanical gardens and regularly sprayed weeds using glyphosate and other chemicals. Diagnosed at 49 years with stage 4, unknown primary. Apparently glyphosate is in everything we consume these days. Unless you eat only organic food.

Cervical NET ? Treating MDs ?

Thanks. Wonderful and inspirational

Thank you for sharing. I am PNET that was diagnosed 3 years ago. This forum has been so helpful- thankfully many new therapies in treatment and control have been developed. I have a team of wonderful doctors and ancillary staff at MSK. Everyone is different and it important to be informed and proactive. You are blessed to have a soul mate and great care taker. PTL.

From California

This has been going on with my third opinion. Stent after Stent...Fina I asked how long are we going to keep Stents in and removing them..first time Stent left in for 3 days bile duct blockage ....called and called metro gi to simply ask what's next...never a call back...2nd opinion touro that's where I was intercepted by a nutritionist explanation how much I need fiber... no gallbladder mentioned...no 2nd opinion ever met...next thing I am informed by this nutritionist Stephanie Bernard at touro that I have with a oncology surgeon to remove my gallbladder...who also stated that I had a hernia and that my sphincter lower esophagus had to be reconstructed.. only the gallbladder was removed..the hernia never mentioned again nor had the sphincter...keep in mind that I was never diagnosed with cancer as a oncology surgeon is to remove my gallbladder...ok...still never met my second opinion dr...next the nutritionist tells me that I have an appointment with a gastroenterologist she chose to clinic me with..still not gi dr I went to meet...who had removed and replaced 3 more Stents...this had no answers.. I switched gi dr Riccardo Romero at ochsner on jefferson hwy..he was not seeing my chart with lcmc...but lcmc could see my oschsner chart.. Dr Riccardo Romero was a God send...he told that I had a polyp in which he removed only to learn after the biopsy this man Dr called me and apologized for removing a tumor and that it was not just a polyp... and told me that I had neuroendocrine (NETS)...anndd that's exactly how I am now where I need to be after 2 years of stents..no answers...It's further education you people have delayed my diagnosis..misdiagnosed me and missed diagnosed me..Thank you Dr Riccardo Romero ...And I am so looking forward to meeting my Rare Cancer Team..My Dr being Dr Philip John Boudreaux on Monday 4/22/2024..Thank you Casey...I'm 🙏 these people have not delayed my diagnosis beyond this remarkable Dr's saving me...#1 symptoms red hot face and ears for over a year and overlooked...God bless you

Monday I am meeting this amazing man...I am amazed that my mouth....and Dr Ricardo Romero....I have had stints..stunts..oncology surgeon remove my gallbladder...but never diagnosed with cancer or gallbladder removal...in fact I left the Metro gi...known now as alliance gastroenterology... I still don't know nor met my second opinion dr Christopher Barrileaux... I was seen by a nutritionist... Stephanie Bernard at touro hospital... I went from having kidney stones...to billary stricture of my bile duct..went in for this dyer emergency to address this low perfusively sweating pain.....like giving birth to 4 children (pain wise) when I have only given birth to 3...several years apart

My cancer has started actively growing (3-4 years ago lutathera retarded it for awhile) my oncologist is prescribing afinitor to again slow the growth - 5 years ago the tumor was 1.8 cm it is now 3cm - I looked into cost of the drug & there is no way I can afford this drug at $2700 for 3 months - what other options could I look at or do I just give up the fight & let nature take its course?

Tom Wilson from the Wisconsin Neuroendocrine Cancer Connection group… now over 250 members. Dr. Warner operated on my wife Lynn in October 2022 lysis of adhesions - a major surgery. ThNk you for making the time to answer patient questions.

Ashley, I'm glad you found out what was wrong with you. You're a fighter. Keep fighting!

Thank you for all the incredible information. Dr. Sonbol you are so wonderful!!

so helpful, thank you

❤

Hi!!! My name is Jennifer and I'm located in Dubuque, IOWA

Boris gave me PTSD. Mistakes are understandable but not taking responsibility is not. He made too many mistakes in my case.

Concur, Dr. Jonathan Strosberg at Moffitt Cancer Center is amazing. I owe much of my survival today to him.

Why are symptoms of NETS never discussed? I was dianosed almost 2 years ago. Stage 4 i have had severe diarrhea for 2 years. Octeatide did not help, no medication has helped, no diet has helped. I spend at least 15 to 20 times a day in bathroom. I had reversal of illeostomy in September. I had an awful surgeon for emergency surgeries 2 years ago and spent 2 months in hospital. I am now on Oxyplatin/Folfax to try reduce size of tumors in hopes of slowing diarrhea. Symptoms are killing me nutritionally as i am not absorbing food, meds.nothing. I've been to Mayo, local Neuroendocrine oncologist and theyve tried everything. I am exhausted and sick. Cancer womt kill me but symptoms will?

Hi just had surgery in Oct. for lung net tumors. However just had MRI and CT scan. Still other tumors and many many nodules in both lungs!! Hope to get an answer on what’s next. Here from FL..

I’m new here…I’m currently undergoing diagnostics for carcinoid cancer

Do you know much about GI neuroendocrine tumor (primary site) leading to peritoneal carcinomatosis?

Dr. Clarke sounds wise. Her ability to explain complicated issues clearly is beautiful. Her discernment to navigate this complex disease is remarkable. God bless her.

Thank you for sharing your journey, Ashley. As a mother of a son living with NET, you’ve given me hope and reminded me that we can “live as if we’re living.” Wishing you continued healing and joy with your family.

My quality of life is killing me

I have no community other than family and doctors but no one who under Neuroendocrine cancer other than my Oncologist, Gastro etcetc etc

South Dakota

Ashley, you are a WARRIOR! I'm so thankful to know you on this journey. YOUR journey, your attitude, and your wife all inspire me on my NET cancer journey. THANK YOU for serving our country and all you do! "Live as if you're living!" I love this! This is a beautiful story with 3 amazing humans (your son is precious, too). Thank you for being YOU!

Wow, what a beautiful story!!! Keep on living Ashley!!!

I am 17 years post diagnosis with metastatic carcinoid cancer. I get my Sandostatin Lar shot in my bum every 28 days. The doctor that you need is Jonathan Strosberg in Tampa at Moffit Cancer Center. My local oncologist wanted to do targeted therapy so I went back to him for a consult. In my case he said no because my Mets are stable with the injection so why do something that could change that?

Ashley!! You are a total warrior 👊, i got diagnosed with carcinoid lung tumour in 2021 after 2 years back and forth to the doctors, knowing there was something wrong but kept being told, i was young fit and healthy, i felt i was going crazy! But you doing all that research is unbelievable and so brave❤ i wish you and your family all the best for a long happy life together ❣️xx how cute your wee boy is also! 😊

So proud to call this amazing person my friend. This was beautifully done.

I've known Ashley since 2007, and she is the epitome of living that Carpe Diem life... her and Melissa are an inspiration. I say we add a new one, SEMPER CARPE! (It's Latin!)

This is my beautiful sister Ashley and her amazing family. Keeping ya'll in my prayers... ALWAYS! I love you!

Thank you for sharing your journey. Your story is so similar to mine, especially about having to be my own advocate after a long journey of mis-diagnosis. It was also through my own research that led to discovering my symptoms were matching that of Carcinoid syndrome, with small bowel primary. I wish you all the best today and always.

Best of luck with everything… you truly are beautiful and I hope with you

Eileen, this is great news! So happy that you are well AND racing cars! Weee!!!

Not the Mel Phillips I thought this was going to be about who's a pedophile who preyed on young ring boys who to this day still haven't got justice.

Stay strong...Amen for a long life

Amen 🙏

“There’s so much more to life than my job title…it’s about what we are as a person in our soul…” such a beautiful testimony and story! “Mom” is a wonderful title and you’re inspiring them and all of us! ❤

Thank you for sharing Taryn’s story! Taryn, you are such an inspiration to so many! ❤ there were many things you shared that beautifully paralleled my views on life “pre” and “post” cancer. You’re giving hope by sharing and living the life you dreamed of~cancer did not diminish that! Many blessings!

Mary, you are an inspiration to so many of us! You are proof that we can THRIVE, give back, and soak up (like you, water in the ocean) all life has to offer with NET. Thank you for being a mentor, collaborator, a source of wisdom and warmth, and friend to so many; including all of us in the NET community. You’re such a blessing to your family, undoubtedly,…and to us all. Much love! This video touches the deepest part of my soul and inspires me so much! ❤

I live in turkey and i have daughter 9 years old she has a carcinoid tumor in the left upper main bronchus. We both my wife and me adraid of sonething gonna be bad to our little girl. Is someone else whom can i speak when diagnosed first and what kind of treatment applied on her or his . And how many years that he or she live without diagnosed second time with this thing. My darling is too young to overcome this ilness i fear everyday for her.

Dr. Choti performed colon, liver and ovarian surgery for my mother at Hopkins 20+ years ago. Mom is now 93 years old thanks To Dr Choti. He’s a wonderful man and a skilled professional. I can’t thank him enough for saving my mothers life.

I have neuroendocrine cancer that started in my saliva glan I've got little help with my cancer treatment

i farted out a baby-