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I was just diagnosed 3 days ago with a NET to my Ileum. Waiting now to be seen by a physician to discuss my treatment options. This was a very informative video. Thank you

Thank you! I may be facing this diagnosis and will see a dermatologist.

Stephanie has been an inspiration to me throughout my NET journey. Thank you, everyone, for all you do for patient education, research, and support!

Do you have any info on TIL therapy?

Hola, tengo 63 años con CANCER DE PANCREAS, en la porción inferior de la cabeza y proceso uncinado del páncreas, persiste lesión hiperdensa, con medidas aproximadas de 4. 5 x 4 x 3. 5 cm (CC x AP x T) que genera obstrucción y dilatación del ducto pancreático. Dicha masa rodea la arteria y la vena mesentérica superior. Hay estriación de la grasa en la raíz del mesenterio. Se observa estabilidad del tamaño tumoral al comparar con resonancia de febrero de 2024.CA 19-9=873ng/ml, ESTADIO IV. Llevo 7 de 12 de Quimioterapias con FOLFIRINOX. Metástasis en vértebra T1 por PET , RNM y TAC. Lesión blástica, sin dolor ni déficit neurológico. (me van a realizar Radioterapia) (CIBERKNIFE MONOFRACCION). Paciente de clínica Oncológica Astorga en Medellín Colombia y de Baptist Florida. Quisiera saber si hay otro tratamiento complemento o mejor para mi caso o a dónde me recomiendan comunicarme. No tengo seguro Internacional, Tengo Nacional Poliza Sura. Por favor su ayuda, muchas gracias. JOSE QUINTERO +573023885295 josefqa2@gmail.com Gracias

هل يمكن ان بساعدنى احد زوجتى تعانى من نفس المرض ولا يوجد طبيب متخصص فى NET فى بلدى لا اعرف ماهو الحل

Great tips and advice for relaxing during stressful procedures. Thanks for putting this together!

❤❤❤❤❤

What would the downside have been to start lutathera right at the outset, or at least after the liver resection?

مرحبا NET فى بلادى لايوجد تخصص NET هل يمكن ان تساعدنى للسفر لاجراء فحوصات وعلاج لذلك الورم تحياتى اليك

Thanks. This was very helpful!

Fantastic!!

I have the opposite problem. Constipation! Had 3 tiny neuroendocrine tumors removed in 2022 plus my gallbladder. I always had a tendency to constipation before surgery. Maybe that's a good sign? 😉

❤ so very helpful thank you

Can you help me my wife have NET

❤ thanks so much

هل يمكن أن يساعدني احد زوجتى مصابة بهذا المرض

Nancy your quick message was powerful. This was exactly my same experience.

too many commercials for a video which is essentially an infomercial

youtube.com/@user-bc1lc8fm3w?si=yonejoad8JVWA2Lj

Thanks for posting

These first 4 episodes have been incredibly informative and helpful … NET was a diagnosis in the family … we are just learning about it, and understanding the diagnosis, terminology, processes and procedures is invaluable to all family members involved, in my opinion.

Traducere an Romana..

I have the cells now plus an autoimmune disease what next I guess it’s stable now ?

Great presentation, thank you!

1:29 review

I did well for over 2 years with having my prrt in Nashville at Vanderbilt. Now growth in liver has appeared. Available round 2 has been brought up.

Thank you for this info. Last year they found via a CT-scan a NET tumor in my left lung. I was already for a long time very, very tired/fatigue, had lost a lot of weight, had hot flushes and at night I could wake-up complete wet of sweating. When they had found the tumor the doctor told me that these symptoms had to do with the NET cancer. The tumor is removed, my under part of my left lung is removed and 3 lymph nodes. Lucky the cancer was not spread. I need to be checked via CT-scan every year for 10 years.

Can we conclude that the major breakthrough in the treatment apart from surgery in the localized disease are somatostatin analog and PRRT.

Great presentation of a very confusing topic.

Though neuro-endocrine cells are are present in many organs chiefly the aero digestive passages the lungs are the most common seat of NETS, no one knows why?

There are several ways to treat metastatic NET such as medicines, IR, PRRT, and surgery. The most important thing is the sequencing of these modalities.

Good to share. I have NETS.

Good grief!!! Turn the obnoxious music down or better yet, off !!

Thank you, Congressman Castro, for sharing your NET story. I'm sure you will help many people through your position in government. May you be healthy.

Are there any stats on NEC located in the tongue?

My husband was just diagnosed with NEC in his tongue which is also in his lymph nodes in his throat. Very rare location that I cannot find any info on! PET scan appointments are two weeks out and I am so frustrated.

How many sitting of PRRT treatment

Very good presentation. I wish this was available to watch 22 months ago.

Very informative

I have been extensively involved in trials for 2 years with NIH and NCI. I approached them on my own. I am a poor man. I say this because I want others to know you can do it too regardless of your race.

My Cardio doctor for 20 years.

Thankyou. I,m at the beginning of my journey awaiting surgery for likely neuroendocrine 24:24 pancreatic tail tumour.

Promo_SM 💞

매우 매우 감사합니다❤

My carcinoid cancer was in the Aisle of Vater.Affecting my small bowel snd pancreas and now blood sugar I chose not to have Whipple surgery but take Lanroetide for the last 3 years. It took 7 months and MANY MRIs and scans and blood work ti find the tumors The tumors are Very rare and was very difficult to find . My ONCOLOGIST is with the START CENTER IN SAN ANTONIO TX MY Gastro doctor is the one who finally found the tumors I am doing ok with 2 insulins trying to control my blood sugar Pancreas is functioning at 50 % I enjoy your posts

This doctor is not serious. He's always joking. NET s are incurable as of now. R&D , clinical trials are on.

I am a NET's patient. I have stage 4 as its in my lung, my mediastinal lymph node metastized to my liver my small intestine and my pancreatic area not the pancreas itself. I dont suffer from any GI issues , I suffer from the exhaustion and loss of breath due to the somatostatin being right on my heart. Thank you posting Its very hard to get information thats not 5 or 6 years old but i need to see it .....64 and still here....

Best Dr. ever. I love the man and his teeam, keeping me alive.