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Agradezco enormemente la intervención y la información de la doctora Jaydira Del Rivero y gracias a Michel de Nets Mexico por el programa de anoche visto en Montilla, Córdoba, Andalucía, España.
You are awesome in your explanation of your speciality. I will contact you as I have lung Neuroendocrine tumors. Surgery Oct. 2nd done. CT in May shows increase in many more.. Thank you..
This is a fairly new treatment, not offered by most hospitals including mine. Do I need a referral from my oncologist? Right now I am getting Folfox chemo.
Great information shared. I had the opportunity to met Alex at the Atlanta, GA Nets Conference in 2022. Great person with a great spirit. You rock. A special thank you for sharing your story. I hope to see you in the near future, ☺
Thank you Shari for sharing your story with us. My mother, Claire, is the friend you mentioned in your story. I know you have been a blessing in her life since she’s met you because of this type of cancer. Praise the Lord for your positive attitudes and outlook on life! I truly believe that has been what has helped my mom get through the hard days. Praying for stability each day as you take “one day at a time” living it to the fullest.
Thank you for this video. I am surprised by Shari saying that her prognosis was 2-4 years. On the day my wife passed away, her attending told me that my wife probably had her NET beginning 24 months before her death. From what I read high grade live only a little over half a year after diagnoses. My wife died 8 months after being diagnosed. She was high grade but the only treatment she got was Lanreotide and Affinitor. None of the drugs Shari mentioned were even suggested to my wife. This is eye opening. I wonder if my wife received all the treatment she could have. We only had one doctor, which makes your point. We never questioned her doctor or got a second opinion. I feel (I could be wrong) that doctors were not as aggressive with my wife's disease as the disease was with my wife. The attending who told my and me of her diagnoses told us this was the best cancer to have. He gave us great hope.
I am newly diagnose Nets patient ( 3 months in) I attended this conference in Atlanta and It was awesome. I learned so much and gain a new family, Thank each of you for all of your hard work within the Nets community, I no longer feel alone. (Zebra Rocks)☺
After PRRT, the treatment halted the growth of my pancreatic net tumor and the spread to liver and lymph nodes , I think if PRRT was done earlier- I would have a better quality of life. After completing PRRT - I am very fatigued I have to sleep 14 hours per day, I’m in pain (was in pain before as well as my cancer was progressing), I can’t eat much. Although my scans look “good” my quality of life pretty much sucks. I know people can feel a bit better after PRRT but this has not been my experience. I guess I would feel worse if my cancer was still in progression but idk - net is not a walk in the park as some may think. My disease is not low grade though. Thanks for this video. I hope things can improve for me eventually
I had my first tele-visit with Dr. Maluccio Monday of this week. Thankyou Maryann for directing me to her. Without NCAN I’m not sure it would happen. She’s a great connection for me in my recent diagnosis and I look forward to more input along my net journey. Thanks so much!
Am really looking forward to meeting her and working through treatment for my own diagnosis. We’re lucky to have someone in our town like Dr. Maluccio.
Professor Prentice, it was a joy to hear you sing. I would love to share your story with our Trojan family and my FB friends. You found a wonderful way to transform your healing process into a "song". You are a blessing to others! Thank you so much for sharing!!! #FightOn
Thanks so much to all the panelists and Steve is a really fun moderator! This was a great discussion for patients, caregivers, and anyone with any interest in Neuroendocrine tumors and this cancer that really is a full spectrum of disease. Thanks from the bottom of my heart! 🖤🦓🖤🦓🖤🦓🖤🦓🖤
Thank you to our wonderful, experienced panel of NET specialists: Dr. Aman Chouhan from UK, Dr. Jaydira Del Rivero from NIH and Dr. Eric Liu from Rocky Mountain Cancer Center. Special thank you to Mr. Steve Mazan for moderating the program. Please share your thoughts with us.
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