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.
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.
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. firstname.lastname@example.org
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.
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.
Bearing in mind that I have been to a number of conferences and seen many videos, much was not really new for me. Some things on my mind from the conference:
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.
- PNETs (up to 15% inherited)
only test if multiple primary tumors in the patient or if another feature of a syndrome is present.
- Lung NETs and Small-Intestine-NETs (rarely inherited)
Only if another feature of a syndrome is present
- Pheo/Para (35-40% inherited)
Testing recommended for everyone with these NETs
- Medulary Thyroid Cancer (25% or more inherited)
Testing recommended for everyone with these 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 uses ROAD iD. It looks good to me.
There are many other companies offering Medical ID
American Medical ID
Creative Medical I.D.
of course, Amazon.com
and many others.
- For myself, I do not wear an ID bracelet, but, I do have an “In Case of Emergency” app on my smart phone which is with me most of the time. On my Android phone, I use Medical ID(Free): In Case of Emergency.
It can be set to show whether you are an organ donor, height, weight, medical conditions, allergies and reactions (“Epinephine only in Emergencies”), current medications and notes (here I list emergency contacts family, PCP, Oncologist, Health Insurance Plan and number, and pacemaker model.) This can be set to appear on your home screen even if it is locked, so that emergency people can access the info.
There are many of these apps available for both Android and iPhone.Always download only from Google or Apple stores.
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.
We have added a new page to this blog which lists a large number of information sources for NETs! See the menu above. It now has NETs Information Sources as a link.
One of the worst problems with our disease is the difficulty of finding accurate, appropriate, reliable information about the disease and our own manifestations of the disease. Dr. Google can be very misleading sometimes. Our specialists want to help but usually can only answer the questions we ask and we don’t know what questions to ask.
The best approach we have found is that each patient must be their own best advocate (or have a loved one who can do it.) To be a good advocate one must be as well informed as possible.
Please help us. If you find inaccurate information, let us know. If you find a new trusted source, let us know.
May we all have the best possible outcomes…