Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
What is this doctor's name and where in Iowa does he practice?
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Here is a website where you can find Carcinoid specialists by country and by state, you will undoubtedly find the doctor's name here,
Mayo Clinic has some renowned carcinoid specialists as well in all their locations.
Are you asking because you live in or near Iowa? How are you feeling about your current treatment?
My name is André. My caretaker and best friend, Stephanie (wifey) live near the Sanford/Orlando Airport.
I started getting sick approximately fourteen years ago. Roughly seven years ago, my illness went into overdrive. I have countless ambulance trips with hospital stays. My attacks began by presenting as anaphylactic shock. A local allergist treated me for two years and ultimately sent me to Mayo Clinic. My first appointment was October 16, 2017. It was the best thing that ever happened to me with this journey. On December 21, 2017, I was officially diagnosed with NETs and Carcinoid Syndrome.
The biggest battle that I have is there are no physical indications of tumors. My diagnosis came from signs and symptoms, positive bio-markers and positive response to SSA’s.
On August 01, 2018, my second opinion with another Florida NET Specialist theorized when my appendix ruptured in the 1990’s, it scattered cells throughout my system.
I am so blessed and beyond thankful for the Mayo Staff and fellow patients, who continue to support me throughout this battle.
I am currently on Lanreotide, Creon, Xermelo, Enterade and several other medications to give me some quality of life.
One day, Steph and I want to work for Mayo Clinic so we can help other patients feel the same warmth and love that was given to us.
Always glad to help. Please feel free to reach out.
Hey Andre'! Have you heard anything more about Mayo Group developing a Carcinoid Crisis ID card or where I can get one? Thanks❣🦓
Hello, All in the NETs discussion group,
Perhaps many of you are aware that November 10th was NETs awareness day here. I found a video that talks about all aspects of having a NETs diagnosis. Physicians, nurses, and patients all are contributors to this video. Here is the link,
I would love to hear from you. How are you feeling today? What challenges are you facing with your NETs diagnosis?
Here is an article that I thought you might interesting, about a youngster with NETs who received a double transplant, pancreas/liver. The girl was from Baltimore, but the double transplant was done at a children's hospital in Minneapolis.
In the PRRT discussion, https://connect.mayoclinic.org/discussion/prrt-treatment/ we have a member from Mexico, @marifersitacastro, whose husband is having carcinoid crises. As I have not experienced a carcinoid crisis, I'm asking if you could respond to her if you have any helpful experience or information. As you will see, Connect has a program that will translate your English response into Spanish for her.
Hello All: For those of you who have had surgery for NETs in the thoracic area there will be an online seminar led by a doctor who treats this type of cancer. Here is the information,
Who: Sukhmani K. Padda, MD, is the featured guest
When: Thursday, September 2, 2021 from 12 noon to 1 pm, Eastern Time
Where: CCF’s Facebook Page, https://www.facebook.com/Carcinoid/. Just come to the page at noon and the program will begin. There is no need to register nor is there a special link.
For anyone not on Facebook, each of the presentations in the series is available on CCF’s YouTube channel, https://www.youtube.com/user/CarcinoidNETs. To receive notifications of all new videos on our YouTube channel, CLICK LIKE, SUBSCRIBE and HIT THE BELL to receive notifications each time a new video is uploaded.
CCF's Facebook page
Sukhmani K. Padda, MD, thoracic medical oncologist, was recently named Director of Thoracic Medical Oncology at Cedars-Sinai Cancer in Los Angeles, California. In collaboration with multidisciplinary clinical experts and scientists, Dr. Padda's work focuses on expanding clinical trials and translational research in thoracic oncology. The ultimate goal of this research is to improve the outcomes of patients with thoracic malignancies.
Dr. Padda has a particular interest in improving treatment for patients with rare thoracic tumors — such as thymic malignancies and lung neuroendocrine tumors — and genomic subsets of lung cancer, such as KRAS- and EGFR-positive tumors. Dr. Padda also conducts research into tumor biomarkers to help determine optimal treatments for patients.
She works with thoracic oncology experts around the country, leading and participating in clinical trials through the National Cancer Institute (NCI) Cancer Therapy Evaluation Program (CTEP) Cooperative Groups (e.g., ECOG, SWOG). She chairs the International Association for the Study of Lung Cancer (IASLC) Career Development/Fellowship Committee, which provides funding to early career lung cancer researchers around the world. Dr. Padda is a member of the North American Neuroendocrine Tumor Society (NANETS) and International Thymic Malignancy Interest Group (ITMIG). She has authored and co-authored dozens of papers and articles for peer-reviewed publications and is a peer reviewer for a number of prestigious cancer journals, including the Journal of Clinical Oncology and JAMA Oncology.
Viewers are welcome to pose questions for Dr. Padda during the live program.
There is a study from the Carcinoid Cancer Foundation, through the University of California, which might be interesting to everyone in this group. It will study the quality of life for those living with advanced NETs, Here is the information:
Hello, everyone. I just signed up for this group and hope I'm in the right place. I was diagnosed several weeks ago with what looks to be a typical carcinoid tumor of the lung. There are smaller nodules that could be something, but too small to tell. Anyway, the recommendation is for either lobectomy of the upper left lung or lingula sparing upper left lobectomy, which should leave a bit more lung volume. I am more terrified of the surgery than I am of the tumor right now. Has anyone had this surgery and how did the recovery process go? Thanks for any insights you may have.
Hi @amd12, welcome. You've certainly come to the right place. I can imagine that you are terrified to have lung surgery. I'm tagging fellow lung NET members @gapsc @mgreene as well as @hopeful33250 to join this discussion.
When do you have to decide which surgery to have?
I don't know. I am told that since this is a slow growing tumor there is "no rush", but I know that surgery is the next step and don't want to wait too long. Thanks responding to my message!
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