Dr. Pamela Kunz and Josh Mailman have created a webpage that gives us information about coronavirus and NETS:
Our sincerest thank to them for the dedication to or community.
The Carcinoid Cancer Foundation has released a new video about PRRT. Check it out here:
May we all have the best possible outcomes,
This year it will be April 25 at:
Fossil Creek Park
5821 S Lemay Ave.
Fort Collins, CO 80525
Before our diagnosis, most of us know absolutely nothing about NETs, much less the testing and imaging used to diagnose and follow the disease.
The Neuroendocrine Tumor Research Foundation recently produced a podcast about this subject. The podcast is audio, but you can listen to the audio and download pdf files of infographics on this page: https://netrf.org/podcast/episode-2-imaging-testing-and-building-a-care-team/?platform=hootsuite&utm_campaign=HSCampaign
An informed patient is more likely to be their own best advocate.
As many people know, I have maintained a blog about my experiences with NETs. People (including Dr. Eric Liu) have suggested that some of those posts should also be on this site.
My posts about the Ga-68 scan and PRRT have been particularly poplular. So, I have copied them to our blog here. You can click on the post titles to read them
- The Results of my GA-68 Scan
- About the GA-68 Scan
- Another Netspot (GA68) Scan, Next PRRT
- PRRT Meeting Today
- Yesterday’s PRRT
- 2 Weeks After 1st PRRT
- 2nd PRRT Yesterday, Some Complication.
- After the 3rd PRRT
- Fourth and Last PRRT Done!
Or you can read them by clicking on the Category “Cy’s Blog Posts” in the category list on the right or simply scroll down the main page.
I hope that you find them of some value,
We (Colorado NETs Support Group) had our quarterly meeting yesterday. There were twelve attendees. Two of the attendees were new to our meetings.
We had no speaker, so we all spoke. It was a sharing meeting. Each person shared their history and experiences with the disease as much as they cared to share. There was an amazing amount of information about the disease, the treatments, the patient’s experience.
The value of such meetings is immense! Each of us could comment on how hard it is to experience a disease when no one believes you nor can medical people properly diagnose it for years. Even after a proper diagnosis, it can be years before you meet someone with the disease and a shared experience. Because the tumors often secrete hormones that cause us to look well externally, it can be difficult to convince others that we feel terrible internally.
A sharing meeting allows us to understand that all of us go through these problems…
And we survive! One of our members yesterday was diagnosed 40 years ago! The sharing allows us to talk to people with shared problems and I find it to be cathartic.
At the end of the meeting, we had veggie snacks, brownies, pumpkin pie and drinks. Many thanks to those who provided these refreshments. Also, thanks to Presbyterian/St. Luke’s Hospital for providing a conference room for the meeting. That is quite important because we are not an official non-profit and we do not collect dues.
Again. thanks to all and
May we all have the best possible outcomes.
Net Cancer Day is November 10. Lela requested a proclamation from the Colorado Governor’s office for Net Cancer day.
She got it!
This is the official proclamation.Neuroendocrine (NET) Cancer Day-2019
Let’s hope that more awareness and recognition leads to more and better treatments and to a cure!