The Foundation Dedicated to Discovering a Cure for Neuroendocrine Cancer

Caring for Carcinoid Foundation

2010 - What is in Store for US?

Step by step we make progress toward researching & raising the profile of carcinoid cancer and neuroendocrine tumors.

  • The Health Care Bill—what do YOU think? Tell us so that CFCF can write federal and state legislators.
  • Abundance of support and care.
  • Connecting

Hurray for 2010!

I never EVER thought I would be alive to usher in 2010. It’s been 10 years since I was diagnosed. I don’t know why I’m still alive, despite being diagnosed with so much damn cancer at 30. And, the cancer keeps creeping along, but happily slowly.

I look forward to hearing how other patients cope--your stories of challenge, heartache and how you overcame your struggles. In Survivor Stories, faith and family are constant themes. It’s comforting to know that in this time of economic uncertainty and sky high job losses, what matters most is what we already have—friends, faith, family and the beauty of the world around us.

Tell me--what specific ways have helped you in your journey forward? Please share through comments to this blog or through the Survivor Stories.

I want to highlight 3 things in this blog.

First, what do you patients and your friends and family members think about the Health Care Bill? I think it’s hard for anyone to understand this enormous bill in its entirety. But, what do you WISH for in this bill? What do you FEAR in this bill? Please tell your fellow patients and CFCF—either by comments to this blog or e-mail.

Second, CFCF will turn 5 this year. Since beginning CFCF, I am grateful to see how much more support, research and resources neuroendocrine cancer patients have.

For example,

Many more fantastic local support groups exist all over the U.S.;

More patients are sharing their stories with the media and getting their stories published—highlighting our cancer.

Carrie Host wrote an incredible book, Between Me and the River, about being a Carcinoid patient.

Jim Mannett, a fellow carcinoid patient, was featured in the Wall Street Journal. He describes his struggles with the insurance companies and how to prevail in some fights over cost. Thanks to Jim for agreeing to share his story and highlighting Carcinoid/ NET cancers.

What patients have I overlooked here? Please write and tell me.

A recent NIH conference occurred with clinicians trying to determine what to study next.

New foundations exist such as the terrific Lois Merrill Foundation in San Diego. In memory of Lois Merrill, this Foundation dedicates itself to supporting NET patients who cannot afford treatment. Funds come from an annual fundraiser.

Many national conferences exist for patients to receive better information about their diseases.

Ultimately, we patients are lucky to see a true, unified community of patients develop with the hard work of so many wonderful, giving people.

When diagnosed, I remember feeling despair at having a disease that was ignored, under-researched, and seemingly dominated by people who were a lot older that me—people who already had created their own families and rich lives. I wanted to connect with patients my age—those who were going to die very young, didn’t know a lot of others with cancers that were incurable, and who now couldn’t have children.

Now I’ve met a lot of leaders who courageously and generously give their time, advice, and hard work to connecting with those of all ages, ethnicities, NET-types.

Thank you to each person who reaches out to a fellow patient; shares information with a doctor; attends a support group meeting to share and support.

Third, I hope to see more connections made this year.Who do you know who can make a difference? Let’s get them involved!

  • Does your doctor have other Carcinoid/NET patients? Let him/her know about all the resources available for patients today.
  • Do you have time to call another patient? Let us know!

Let’s fight this journey together, making friends and having fun along the way!

My goal for the next couple of months is to get out and take short walks. I am so tired after radiation and the flu, but I think it is so important to get fresh air, stay as active as one can, and eat healthily. I’m armed with a pedometer.

Let me know if you want to join me virtually!

STEP BY STEP!

My blog: lucysnoidblog@blogspot.com My comment about health legislation. This issue is mis-named. It should be called health insurance reform. When you look at the enormous profits these companies are raking in, it is impossible to justify their actions aimed at preventing the US from adopting ways to provide medical care for all citizens. If we are planning to make a difference in NETs treatment, we must bring the most effective advances to the United States: PRRT and the two most effective scans - C1-5-HTP and 68-Gallium PET/CT. I welcome any ideas and support to aid my efforts. I'm trying to get a group of NETs patients to a place where they can at least receive the 68-Gallium scan. I will be listing some information on my blog about where the scan is offered and how much it costs. Until US health insurance companies are convinced to cover the cost of PRRT and these scans, we cannot claim to be providing the world's best medical care for NETs patients. It behooves every person in the US for all of us to have health insurance and to have medical care. I believe we have lost sight of that fact in the political storm surrounding these issues. When we lose sight of the issues we just plain lose.
Hi Lucy I think we have encountered each other on the ACOR List in the past; however I have a client asking for PRRT in the United States. I just wanted to check with you to confirm the fact that there is a PRRT and Gallium 68 studies in Vandebilt in Nashville, TN ad or other places that may be offering the best treatment options. Thank for your help and information. All the Best, Linda Hageman, RN

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