Hello @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes. As this group has grown, not only in our members, but in our sharing and communicating with each other, Mayo Connect has given us our own group. If you look at the Tab labeled “Discussions” you will see many topics that you can respond to and discuss. We should also, always feel free to start a new discussion when our need arises! 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?
Liked by Colleen Young, Connect Director, John, Volunteer Mentor, trixie1313, tsabe2 ... see all
@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.
Liked by Teresa, Volunteer Mentor
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.
Neuro-endocrine-cancer-flyer-2 (Neuro-endocrine-cancer-flyer-2.pdf)
Liked by Colleen Young, Connect Director
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,
https://www.youtube.com/watch?time_continue=7&v=AqAyEGECDkQ
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?
Liked by Colleen Young, Connect Director, mgreene
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
Thank you. Absolutely, glad to help any way that I can. Enjoy your week.
Liked by Teresa, Volunteer Mentor
What is this doctor's name and where in Iowa does he practice?
Liked by Teresa, Volunteer Mentor
Hello @gaylejean
Here is a website where you can find Carcinoid specialists by country and by state, you will undoubtedly find the doctor's name here,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
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?
Hey Andre'! Have you heard anything more about Mayo Group developing a Carcinoid Crisis ID card or where I can get one? Thanks❣🦓
Liked by Colleen Young, Connect Director
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?
Liked by Colleen Young, Connect Director
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.
https://foxbaltimore.com/news/local/baltimore-girl-is-first-ever-recipient-of-double-organ-transplant-for-rare-cancer
@amandafl
Hello Andre! Andre and his wife Stephanie have been founding members of the group and it couldn’t have happened without them!) I want to say thank you to both of you for everything you do! You both are amazing people and we all appreciate you!