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VHL Alliance

Von Hippel-Lindau (VHL) support group and discussion community

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VHL Alliance

Facebook is the latest tech giant looking to take on cancer

Cancer-Inspire's journal

Cancer-Inspire

facebook-is-the-latest-tech-giant-looking-to-take-on-cancer

200150

  • 20 Replies

By Radha_Inspire Digital Editor, Inspire Cancer better watch out. Facebook is the latest tech giant to direct efforts – and dollars – towards the treacherous disease. While treatments for cancer have expanded and outcomes have improved – among adults, the 5-year relative rate of survival for all cancers is about 68 percent, up from 50 percent prior to the late 1970s, according to the ... Read More

VHL Alliance

Hemangiblastoma

In: Other discussion

Coley1st

hemangiblastoma

200150

  • 4 Replies

I had surgery to remove a hemangiblastoma from my left cerebellum 9 weeks ago. And now I have slow recovery well I feel slow as I get dizzy if I bed down for too long and if i turn to fast. Stagger slightly and left hand weakness just a few of my after effects has anyone else been through this? And how long did recovery take ... Read More

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VHL Alliance

Anyone ever have Chemo for colin cancer when you have VHL

In: Other discussion

Christol7

anyone-ever-have-chemo-for-colin-cancer-when-you-have-vhl

200150

  • 2 Replies

VHL has been part of my life since I was two and my grandmother past. My mother has had active VHL since I was 6 and I have had several brain and spinal surgeries since I was 19. My kidneys and pancreas have cycst that are growing at the moment and yet that wasn't enough. A month ago they told me I had colon cancer. Now that we have had the resection we are scheduled to start chemo ... Read More

VHL Alliance

Hello, everyone!

Radha_Inspire's journal

Radha_Inspire

hello-everyone-97

200150

  • 98 Replies

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

VHL Alliance

Pokemon Go and the gamification of health

John2's journal

John2

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

200150

  • 437 Replies

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

VHL Alliance

Watch our recent webinar "Managing the Emotional Toll of Cancer"

Cancer-Inspire's journal

Cancer-Inspire

watch-our-recent-webinar-managing-the-emotional-toll-of-cancer-1

200150

  • 7 Replies

During yesterday's one-hour webinar "Managing the Emotional Toll of Cancer: Finding Support Tips and Tools to Help You and Your Loved Ones," Dr. Liz Harvey, PhD, MPH, LMHC examined some of the common emotional responses that patients and family members experience during the different stages of cancer. Ali Schaffer, LCSW shared practical tools and resources to help patients and caregivers ... Read More

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VHL Alliance

Garlic as an alternative treatment for VHL

In: Medical treatments that worked for me

Mancho

garlic-as-an-alternative-treatment-for-vhl

200150

  • 5 Replies

A friend of mine suggested me to consume garlic before breakfast. I have hemangioblastomas in my cerebellum since 17 years ago. and I´ve had 4 surgeries and Gamma Knife. I´ve been eating garlic these last two years, and doctors told me that tumors are becoming smaller. And I´ve felt better since then . But I don´t know if it is good for me or not; also, I don´t know if it is because ... Read More

VHL Alliance

First Cancer Moonshot recommendation is more patient data

Cancer-Inspire's journal

Cancer-Inspire

first-cancer-moonshot-recommendation-is-more-patient-data

200150

  • 108 Replies

By Radha_Inspire Digital Editor, Inspire The latest Cancer Moonshot report from a panel of top-tier cancer experts lays out 10 recommendations to speed progress in fighting cancer. The first recommendation is to ask patient to help create a large database of tumor profiles. This information will also pre-register these patients for relevant clinical trials down the line. “Many patients ... Read More

VHL Alliance

After a cancer diagnosis, how to break the news – expert tips

Cancer-Inspire's journal

Cancer-Inspire

after-a-cancer-diagnosis-how-to-break-the-news-expert-tips

200150

  • 14 Replies

By Radha_Inspire Digital Editor, Inspire Breaking the news that you have cancer is no easy task, nor is an easy thing to hear. The difficulty can be compounded because few illnesses have the same impacts on a person and those close to them, said Dr. Carlos Fernandez-Robles, clinical director of the Center for Psychiatric Oncology and Behavioral Sciences at Massachusetts General Hospital ... Read More

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