1. < Neuroendocrine Tumors (NETs)
Mentor

COVID-19 and the NETs Patient

Posted by Teresa, Volunteer Mentor @hopeful33250, Apr 15, 2020

Perhaps as a NET patient, you have wondered about the significance of the COVID-19 risk specifically to your situation of treatment and follow up. I recently came across a podcast by Mark A. Lewis, M.D., a GI oncologist and a NET patient himself, and a specialist with Intermountain Health Care. I would encourage you to listen to the podcast and to review some of the links on this website.

Dr. Lewis discusses how NET specialists are making decisions to follow up with their patients either by telemedicine or in-person. The discussion also provides information on how regular surveillance may be postponed during this time if not absolutely necessary.

I found it interesting to learn that if you regularly have monthly injections at a medical facility these can now be administered at home by a visiting nurse. Some other injections for NET symptoms are now being made available to be self-injected. This will help you keep up with your needed treatments without having to visit a medical facility where you might be exposed to COVID-19. You will find links on this podcast to get more information about these services to NET patients and how you might obtain them.

The podcast is about 22 minutes and is well worth the time to listen and learn.

Here is the link to the podcast, https://netrf.org/podcast/special-episode-covid19-and-nets-what-you-need-to-know/

In addition to the podcast, I would also invite you to view this 35 minute Youtube video where Dr. Lewis discusses COVID-19 and the NET patient in more detail. Here is the link to this video,

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 16, 2020

Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient.

@1943 @amandafl @andre1221 @19611ventura @coolwino @tomewilson @terryabk @mgreene @tsabe2 @trixie1313 @ronregency @124124eva @gaylejean @nigelvw @megansims @gtassithomas @remi @sbcook70 @feebee, I'm tagging you to make sure you've seen this post as it is so timely and relevant.

How are you managing these days with the COVID-19 stay home restrictions and dealing with NETs? Are you still getting treatments at your care center? Have consults been moved to phone or video consults?

REPLY
4 replies
trixie1313 | @trixie1313 | Apr 16, 2020
In reply to @colleenyoung "Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient...." + (show)
@colleenyoung

Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient.

@1943 @amandafl @andre1221 @19611ventura @coolwino @tomewilson @terryabk @mgreene @tsabe2 @trixie1313 @ronregency @124124eva @gaylejean @nigelvw @megansims @gtassithomas @remi @sbcook70 @feebee, I'm tagging you to make sure you've seen this post as it is so timely and relevant.

How are you managing these days with the COVID-19 stay home restrictions and dealing with NETs? Are you still getting treatments at your care center? Have consults been moved to phone or video consults?

Jump to this post

@colleenyoung
I'm doing fine now - did have the flu end of February/beginning of March with no cough, but major fatigue, muscle aches, fever, and diarrhea - felt as bad as having chemo infusions! However, started back with after-breast surgery exercises and walking and feeling human again. The talk was interesting, but I'm still concerned as my NET was in breast, although I've been told it is not a primary. Hasn't shown up anywhere else at this time and I'm hoping it never ever shows up again!

REPLY
1 reply
sbcook70 | @sbcook70 | Apr 16, 2020
In reply to @colleenyoung "Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient...." + (show)
@colleenyoung

Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient.

@1943 @amandafl @andre1221 @19611ventura @coolwino @tomewilson @terryabk @mgreene @tsabe2 @trixie1313 @ronregency @124124eva @gaylejean @nigelvw @megansims @gtassithomas @remi @sbcook70 @feebee, I'm tagging you to make sure you've seen this post as it is so timely and relevant.

How are you managing these days with the COVID-19 stay home restrictions and dealing with NETs? Are you still getting treatments at your care center? Have consults been moved to phone or video consults?

Jump to this post

I get my Lanreotide injection at a local Infusion Center. I got mine as scheduled. I wore a mask, they took my temp before checking in and they limit the number of patients in waiting room. I was in and out quickly. Scheduled for next injection next month.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 16, 2020
In reply to @trixie1313 "@colleenyoung I'm doing fine now - did have the flu end of February/beginning of March with..." + (show)
@trixie1313

@colleenyoung
I'm doing fine now - did have the flu end of February/beginning of March with no cough, but major fatigue, muscle aches, fever, and diarrhea - felt as bad as having chemo infusions! However, started back with after-breast surgery exercises and walking and feeling human again. The talk was interesting, but I'm still concerned as my NET was in breast, although I've been told it is not a primary. Hasn't shown up anywhere else at this time and I'm hoping it never ever shows up again!

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Hello @trixie1313 I'm glad to hear that you recovered from the flu! I understand your fear of not knowing the primary source of your NETs. That certainly can cause worry, but like you I'm hoping that it doesn't show up again!

@sbcook70 It is good that you have been able to continue your injections at the Infusion Center. Is the area you live in one that has been hit hard by COVID-19?

REPLY
remi | @remi | Apr 16, 2020
In reply to @colleenyoung "Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient...." + (show)
@colleenyoung

Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient.

@1943 @amandafl @andre1221 @19611ventura @coolwino @tomewilson @terryabk @mgreene @tsabe2 @trixie1313 @ronregency @124124eva @gaylejean @nigelvw @megansims @gtassithomas @remi @sbcook70 @feebee, I'm tagging you to make sure you've seen this post as it is so timely and relevant.

How are you managing these days with the COVID-19 stay home restrictions and dealing with NETs? Are you still getting treatments at your care center? Have consults been moved to phone or video consults?

Jump to this post

Doing pretty good here, I had bad sinus infection/flu end of January first part of February glad that’s over just need some rain here to wash all this pollen away now. I was supposed to have an appointment in March with my dr at the va breast clinic but they rescheduled all appointments for now. Am staying home and hope y’all are staying safe 🙏

REPLY
1 reply
trixie1313 | @trixie1313 | Apr 16, 2020
In reply to @remi "Doing pretty good here, I had bad sinus infection/flu end of January first part of February..." + (show)
@remi

Doing pretty good here, I had bad sinus infection/flu end of January first part of February glad that’s over just need some rain here to wash all this pollen away now. I was supposed to have an appointment in March with my dr at the va breast clinic but they rescheduled all appointments for now. Am staying home and hope y’all are staying safe 🙏

Jump to this post

@remi Glad you're feeling better -- that flu knocks your socks off...the fatigue is the worst with this one.

REPLY
remi | @remi | Apr 17, 2020

glad you are feeling better now also, yes it does knock your socks off. I know it was before the news of covid-19 hit the media all over but all the symptoms match everything I had it was rough..... I was at the walk in clinic twice, hospital once 2 days and my primary care 3 times, then finally it went away.

REPLY
EM | @elm60 | Apr 20, 2020
In reply to @colleenyoung "Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient...." + (show)
@colleenyoung

Good find, @hopeful33250. Dr. Lewis' interview is packed with relevant info specific to the NETs patient.

@1943 @amandafl @andre1221 @19611ventura @coolwino @tomewilson @terryabk @mgreene @tsabe2 @trixie1313 @ronregency @124124eva @gaylejean @nigelvw @megansims @gtassithomas @remi @sbcook70 @feebee, I'm tagging you to make sure you've seen this post as it is so timely and relevant.

How are you managing these days with the COVID-19 stay home restrictions and dealing with NETs? Are you still getting treatments at your care center? Have consults been moved to phone or video consults?

Jump to this post

Thanks for sharing this video.

REPLY
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