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Sep 19, 2019 · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

@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.

Sep 19, 2019 · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

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!

Sep 19, 2019 · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

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. 🙂

Sep 19, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

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.

Sep 19, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

I know this is late but Mayo Jacksonville does have PRRT. Several of my Support group members get it.

Sep 19, 2019 · Neuroendocrine Cancer Support Group: Mayo Clinic FL in Neuroendocrine Tumors (NETs)

Thank you for posting this. The next topic will actually be nutrition which a lot of patients and families asked for. Caregivers and patients are both welcome. Refreshments will be served if you are able to attend in person.

Sep 9, 2019 · What topics do you want for the Neuroendocrine Support Group? in Neuroendocrine Tumors (NETs)

This is actually the discussion topic for our next meeting on Thursday, October 3rd at 5:30pm EST. The meeting is in Jacksonville, FL but there is a call in number for those who are not local and they welcome questions. I am attaching the information if you are interested.

Sep 9, 2019 · What topics do you want for the Neuroendocrine Support Group? in Neuroendocrine Tumors (NETs)

Thank you for the question. I understand what you mean about confusing results from MRI/CT. I have had some confusion myself so this sounds like a good topic. I wonder if we could also add in understanding your biopsy results?