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.
Welcome to the NETs group on Mayo Clinic Connect, @amandafl. This is so exciting to have the online support group here mix with the in-person support group members from Mayo Clinic in Jacksonville, Florida.
NETs support group in JAX meets monthly to discuss a variety of topics such as symptom and disease management as well as the emotional, physical, and financial impact of the disease, featuring invited guests. People who are not able to attend in person can join by phone, using this number. Call 866-365-4406 (International +1 303 248 9655), access code 9537292#.
For anyone wishing to suggest a topic, post your ideas to the discussion Amanda started here:
– What topics do you want for the Neuroendocrine Support Group? https://connect.mayoclinic.org/discussion/what-topics-do-you-want-for-the-neuroendocrine-support-group/
Amanda, I'd like you to also meet @hopeful33250 @ahtaylor @joannem and @tomewilson to name a few members who have been living with NETs or caring with someone with NETs. Amanda, what treatments have you had? How are you doing today?
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@hopeful33250 @ahtaylor @joannem @tomewilson It’s nice to meet everyone. I will be happy to connect with anyone or answer any questions you have about the support group or anything else.
I am on a number of things including Lanreotide, Octreotide, blood pressure medications, Creon, Bentyl, and Xermelo to name a few. I have terrible syndrome that includes flushing, high or low blood pressure, Tachycardia, and the typical bathroom issues. I am more under control after learning from the other patients what works for them and what doesn’t.
Today has been an ok day. Switching my Lanreotide from every 4 weeks to every 3 weeks has helped a lot.
I guess I should introduce myself before I answer people. I am a NET patient at Mayo. It was discovered November 2018. It was in my appendix, small intestines, colon, and lymph nodes. When I was diagnosed, the oncologist (not a NET doctor) at the hospital told me to, “Get my affairs in order.”. My family and I spend too much time thinking that my death was imminent. I learned from my NET doctor at Mayo that this wasn’t the case. I tried to find a support group but wasn’t able to.
I reached out to other patients because I wanted to learn from them and started a group online.
I decided to pitch an idea of a support and learning group for Neuroendocrine Cancer to Mayo hospital. Some of the other patients and I spoke to Mayo about what we wanted. We wanted it for patients and caregivers. (It’s hard for caregivers too!) We also wanted anyone to be able to join. (We have a call in number.)
I could not have done this without the support and help from these other patients. These people have become my friends and I have learned so much from them.
The support group now meets on the first Thursday of the month at 5:30pm EST and has around 30 people who attend. A social worker from Mayo moderates the group and the NET doctor has been in all of the meetings so far.
If you are a part of the group, then feel free to add anything I forgot. 🙂
Amanda, good for you for starting the support group in Florida. I will plan to attend via conference call. Who is the NET doctor down there (I'm in Wisconsin). I run a support group throughout the State of Wisconsin. Attached is our flyer.
This site was given to me at Mayo's in Mn.. I am sooo glad to be able to talk with someone who understands. I am my husband's caregiver. I hope this is right place to ask a question. My husband has had Nets since July of 2017. He has been on Lanreotide shots ever since. He has had 2 oblations for the liver. Which is the place he has tumors. Now he had his first PRRT. My question is? His first PRRT was very easy on him. Do they get harder each time? Also he has a very bad heart valve.The bad valve dosen't seem to cause him any trouble at this time. Will he be able to have it fixed if the PRRT works? Thank you for listening.
A very concerned wife.
Welcome to Mayo Connect, @glenkinman68
I am glad that you have joined our NETs discussion group. It is wonderful that you are trying to learn all that you can so that you can advocate for your husband.
It sounds like your husband is getting some good care. You mentioned that he has a bad heart valve. I'm glad to hear that it is not a problem now. Some of us have heart problems that are not related to NETs. Has your husband been told that his heart problem is related to NETs? Which heart valve is affected?
Your oncologist could best advise you as to whether the PRRT treatments will be more difficult to tolerate each time. It is good that he got through the first one easy, though.
Is his liver considered the primary site of the NETs? How does he feel in general? How is his appetite?
Here is a video about PRRT treatment that you might find helpful,
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.
Hello, @andre1221 and @amandafl, I am pleased to join Colleen, @colleenyoung, in welcoming you to Mayo Connect. It is good to have more Floridians in our discussion group!
It sounds as if you have both went full-circle with this carcinoid disorder. I'm especially intrigued by @andre1221's story of no visible tumors. I can't imagine how difficult it was to find the correct diagnosis. It sounds as if Mayo in Florida was really amazing to help you figure out this mysterious situation. I can tell you are grateful.
Andre, you say, "I am currently on Lanreotide, Creon, Xermelo, Eneterade, and several other medications to give me some quality of life." Which of your symptoms have been helped the most by these treatments"? Also, I have heard of the benefits of Eneterade before. How much do you use each day, or do you only use it when you are having symptoms?
Thank you so much!! It has been such a horrible last few years. When I started at Mayo on Oct. 16, 2017, they had just lost Dr. Elizabeth. They sent me to a NET Friendly hem/onc in her place. He started me on Sandostatin 30mg and 100mcg of Octreotide. I kept getting more sick, so the dosing of Sandostatin increased and maxed out at 90mg.
I was so fortunate when I met my battle buddy, Nigel Vaughn-Williams. He was being treated by Dr. Pashtoon Kasi. I immediately switched to Dr. Kasi and started on Lanreotide 120×28 days, plus increased the Octreotide to 300mcg. I got instant relief but the diarrhea and occasional carcinoid attacks and crisis continued.
Once Dr. Starr took over, he increased my Lanreotide 120mg to 21 days. On that routine, I was still requiring “rescue shots” but had huge improvement comparatively. He increased me to my current, 180mg x 21 days. It has been amazing!!! In the last 11-12 weeks, I have needed only one rescue shot.
When Dr. Kasi took over, he put me on 24,000 units of Creon but quickly increased it to my current 36,000 units. I do 3 at each meal, 9 per day. Just adding Creon brought my diarrhea from 20-21 x a day down to 13-15. He also started me onto Xermelo. That did the best for me, putting me down to 3-5 x a day.
Roughly two months ago, Dr. Starr’s Physician Assistant, Ashton Ritter told me about Enterade. She gave me a one month sample. I took it as instructed, 2 bottles a day for 5-7 days, then transition to 1 a day or every other. Once you get the initial 5-7 days under you, most can take it as needed. If you go too long without use, you need to restart the cycle. Our local, Enterade Rep, Cynthia has been amazing. She was a guest speaker at one of our support group meetings as well. The best news about Enterade is I’m now down to 0-1 or 2 times of diarrhea per day.
Hopefully this information will help somebody along this journey. I’m so thankful everyday for being a part of Mayo Clinic and this group.
Take care ~ André
I so appreciate your sharing your journey with NETs treatment. You have some great experiences! When we have new members on Mayo Connect, I plan on "tagging" you (mentioning your name in a post) so that you can offer some encouragement and support!
Thank you. Absolutely, glad to help any way that I can. Enjoy your week.
@wordnoid I’m glad that you have found such good treatment. I’ve heard about the doctor in Iowa before.
What is this doctor's name and where in Iowa does he practice?
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