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Support Meetings

Posted by jennb1971 @jennb1971, Mar 18 12:13pm

Hi,
My boyfriend was diagnosed with stage 4 esophageal cancer in June 2025. He has treatment every 2 weeks including HER2 and recently immunotherapy. He is not a surgical candidate. He is doing very good with his treatment but is tired and has bad nose bleeds. I saw an older post about zoom meeting on Wednesdays and Sundays. Are those meetings still being held? Are there discussions how people are dealing with their diagnosis? I appreciate your help.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

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mrgvw | @mrgvw | Mar 19 10:51am

Yes... I, with my fellow EC counselors, still conduct these twice-weekly free Zoom calls for my fellow EC patients and caregivers. We've been doing these for just about 5 years now. Understand we do not represent any one EC facility or website... but I recruit my fellow EC patients from all over... Mayo sites, SmartPatients, and many Facebook EC sites. Patients from all over the world join us for these 2 hour calls (average length these days). If you'd like to attend any of our calls, I'll send you a pm so you'll have the link to use anytime you'd like. I also have hundreds of phone numbers stored in my phone from those across America and Canada, and I talk to hundreds more overseas thru Facebook Messenger.

Gary

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mrgvw | @mrgvw | Mar 19 10:56am

Well, for some reason I can no longer send pm's to other patients and caregivers inside this Mayo site. I'm awaiting an answer from this site's administrator.

Anyway... here's the one-touch Zoom link with call times:

Sundays, 9am Eastern
Wednesdays, 6pm Eastern
https://us06web.zoom.us/j/4550284795
Should a passcode be asked for, it is tuiBE5

Gary

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jennb1971 | @jennb1971 | Mar 19 11:55am
In reply to @mrgvw "Yes... I, with my fellow EC counselors, still conduct these twice-weekly free Zoom calls for my..." + (show)
Profile picture for mrgvw @mrgvw

Yes... I, with my fellow EC counselors, still conduct these twice-weekly free Zoom calls for my fellow EC patients and caregivers. We've been doing these for just about 5 years now. Understand we do not represent any one EC facility or website... but I recruit my fellow EC patients from all over... Mayo sites, SmartPatients, and many Facebook EC sites. Patients from all over the world join us for these 2 hour calls (average length these days). If you'd like to attend any of our calls, I'll send you a pm so you'll have the link to use anytime you'd like. I also have hundreds of phone numbers stored in my phone from those across America and Canada, and I talk to hundreds more overseas thru Facebook Messenger.

Gary

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@mrgvw Thank you. We will try and join next Wednesday. I really appreciate it!!
Jennifer

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trapshooter | @trapshooter | Mar 20 7:31am
In reply to @mrgvw "Yes... I, with my fellow EC counselors, still conduct these twice-weekly free Zoom calls for my..." + (show)
Profile picture for mrgvw @mrgvw

Yes... I, with my fellow EC counselors, still conduct these twice-weekly free Zoom calls for my fellow EC patients and caregivers. We've been doing these for just about 5 years now. Understand we do not represent any one EC facility or website... but I recruit my fellow EC patients from all over... Mayo sites, SmartPatients, and many Facebook EC sites. Patients from all over the world join us for these 2 hour calls (average length these days). If you'd like to attend any of our calls, I'll send you a pm so you'll have the link to use anytime you'd like. I also have hundreds of phone numbers stored in my phone from those across America and Canada, and I talk to hundreds more overseas thru Facebook Messenger.

Gary

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@mrgvw
Yes, thank you, Gary. My name is Tom. Just diagnosed last week. I am a Mayo patient in northern Wisconsin. Interested in learning anything I can about EC. What do you need from me?

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wklapp | @wklapp | Mar 20 12:57pm

I have had lots of issues with my nose and eyes during FLOT treatment. Either my nose was dried up or constantly running. I used saline spray on dry days and nasal spray on drippy days especially at night.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 20 2:04pm

@mrgvw is the group leader of these patient-led Zoom meetings. Please note that they are not hosted by Mayo Clinic. 🙂

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mrgvw | @mrgvw | Mar 20 5:02pm
In reply to @colleenyoung "@mrgvw is the group leader of these patient-led Zoom meetings. Please note that they are not..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@mrgvw is the group leader of these patient-led Zoom meetings. Please note that they are not hosted by Mayo Clinic. 🙂

Jump to this post

@colleenyoung

I make sure ALL coming to our Zoom calls know we're NOT affiliated with ANY particular site... SmartPatients, Mayo, and many many Facebook EC sites.

What they do know is we are fellow EC patients and caregivers who are willing to help... in real-time. They find out real quick the value we offer.

Gary

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trapshooter | @trapshooter | Mar 22 7:44am

Hello Gary,
I was just diagnosed 2 weeks ago. PET also showed a bright spot on my left hip bone and a lymph node near my left armpit. Will have a biopsy of the bone and a port installed next Monday.

I have been reading the many comments regarding chemo, looks like I have a long/hard row to hoe.

Your comments have been very informative. Thanks for your help.

Trapshooter - Tom

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