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Lung Neuroendocrine Tumor (LungNET)

Lung neuroendocrine tumor (LungNET) support group and discussion community

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Lung Neuroendocrine Tumor (LungNET)

What’s the story of your rare disease diagnosis?

Brian's journal

Brian

whats-the-story-of-your-rare-disease-diagnosis-1

200252

  • 274 Replies )
  • Processing ...

Dear members, Today, more than 200,000 Inspire members have a rare condition. You have made Inspire a place to share your experiences with others who understand what you’re going through and help others at the same time. Many of you have described how long it took for you to receive an accurate diagnosis for your rare condition, while some of you found your diagnosis quickly. If you’d ... Read More

Lung Neuroendocrine Tumor (LungNET)

Pokemon Go and the gamification of health

John2's journal

John2

pokemon-go-and-the-gamification-of-health

200252

  • 458 Replies )
  • Processing ...

Dear members, Like many, we’ve been watching the phenomenon of the Pokemon Go app, and not only many of our employees and friends are actively catching Pokemon, but several Inspire members have recently shared their experiences about how this has positively impacted their health. The game, as I suspect many of you know, allows players to use their mobile devices to explore real-world ... Read More

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Lung Neuroendocrine Tumor (LungNET)

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200252

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

Lung Neuroendocrine Tumor (LungNET)

Lung vs. Liver Mets

In: Living with LungNETs

SandyJ16

lung-vs-liver-mets

200252

Has anyone had both liver and lung mets diagnosed at the same time? If so, which one took priority or were they treated at the same time? I haven't been officially diagnosed yet, but NM Octreotide scan shows spots in both after removal of primary tumor in ilium. Took me over three months of stressful fighting with my insurance company (Group Health Medicare Advantage) to receive a ... Read More

Lung Neuroendocrine Tumor (LungNET)

Hello, everyone!

Radha_Inspire's journal

Radha_Inspire

hello-everyone-95

200252

Hello everyone! My name is Radha and I am the digital editor at Inspire. We’d like to share some news about an editorial initiative that we hope will be of use to you. Your community is a space where you can express your thoughts, seek support, and share information with fellow members, and will, of course, continue to be. My goal is to take cues from your discussions, your questions ... Read More

Lung Neuroendocrine Tumor (LungNET)

Bay Area NET Patient Education Conference Videos - Now Available Online

In: News and research

NETRF

bay-area-net-patient-education-conference-videos-now-available-online

200252

NETRF is pleased to share that the recent Bay Area NET Patient Conference videos are now available online for viewing. Check out the terrific programming and presentations here: https://netrf.org/patient-resources/vide os/sixth-annual-bay-area-net-conference ... Read More

Lung Neuroendocrine Tumor (LungNET)

CAPTEM Issues??

In: Living with LungNETs

thehazelwoods

captem-issues

200252

My husband has atypical bronchial carcinoid with extensive liver mets nd some lymph node involvement. Surgery is not an option at this time. His Ki67 is 10%. He has been on lanreotide sine August 2016. He started CAPTEM in January and was on his third day of his second cycle when his platelets dropped from 212 to 12 within a week. He required a platelet transfusion last Friday. HIs ... Read More

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Lung Neuroendocrine Tumor (LungNET)

What’s in a number? The million member milestone

Brian's journal

Brian

whats-in-a-number-the-million-member-milestone

200252

Dear members, Last night, Inspire hit a milestone -- one million members. One thing that is clearer than ever is that the value of this community is created by you, every minute of every day. I often think that our job is to provide you a safe, supportive space, and then get out of your way. The words you write and the friendships you forge are things we could never create on our own ... Read More

Lung Neuroendocrine Tumor (LungNET)

Reflecting on our community

Brian's journal

Brian

reflecting-on-our-community-1

200252

Dear members, I'm writing to share with you a recent story about Inspire. We were honored to be described in this manner and particularly grateful to members Renata Louwers and Mike Lawing for their insights. Please share the article as you see fit. Also, Inspire employees gathered at our Arlington, VA office last week for a company retreat. We were joined by five Inspire members who ... Read More

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