Infomative video and Facebook Live links from The Carcinoid Cancer Foundation and NANETS (North American Neuroendocrine Tumor Society).
COVID-19, coronavirus links click here.
Stay well.
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
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,
Cy
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-2019Let’s hope that more awareness and recognition leads to more and better treatments and to a cure!
We will be having our next meeting on Saturday, November 23, 1:00 pm to 4:00 pm at Jack Chang MD Conference Room, 2nd floor, Rocky Mountain Hospital for Children, Presbyterian/St. Luke’s Hospital.
We have not scheduled a speaker. This will be a sharing meeting. Lela will bring pumpkin pie! Our apologies for the short notice.
RSVP please to Lela Selby. lelaselby@msn.com
This is the best explanation that I have yet seen about seratonin, NETs and carcinoid syndrome.
It covers what seratonin is, how it works, the symptoms that it can cause in us.
Highly recommended.
The Healing NET Foundation has initiated this fundraiser:There was an immense amount of information given to us patients and caregivers yesterday. Well delivered and useful information. One cannot begin to list everything we heard. For that, you should watch the conference stream that is available on YouTube here:
This will be available for a long time, I think. There will be individual videos of the sessions as soon as they can be properly edited.
NETRF has initiated a podcast. If you like/listen to podcasts, it is available here: netrf/podcast and will soon be available at all of the normal podcast sources.
Most of us know that there is a familial connection for some NET patients. And, it seems there must be some genetic connection between tumors in a patient and tumors in another patient. Dr. Fishbein’s presentation clarified those thoughts for me, educated me more on genetics and especially brought home these points about whether to be tested for inherited genetic causes of NETs.
Josh Mailman brought up the desirability of having a medical ID. He said the he wore his all the time. We have discussed this in our support group in the past but it bears repeating. Having readily available Medical Information may be very important in the case of an accident or crisis.
Josh also led a great discussion on communication between patients and doctors. A very important point to me was how important the caregiver can be in the discussions.
It was a wonderful conference and I may add to these points later. If you went to the conference, don’t hesitate to add your take-aways in the comments below.
Many people find it easier to watch video presentation than to read all of the technical things on the internet about neuroendocrine tumor and try to winnow out the fluff and nonsense.
We have added a video page always available from the main menu above, with youtube video playlists from a number of trusted sources. Our intent is to keep this up to date, so that the information is now and not stale.
We will certainly post the videos from the NETRF 2019 Patient and Caregiver Conference on August 10, 2019 as soon as they are available.
May we all have the best possible outcomes.