“i am a liver!–the concert” to benefit fellow zebra


Lindsey Miller and I share something in common. We are both “zebras”–what they call those of us with Neuroendocrine (NET) / Carcinoid cancers.

Lindsey’s cancer started in her pancreas. Mine started in my ileum (intestines).

Many of the treatments and diagnostics for our rarely-diagnosed disease are not funded by insurance, nor are they offered in the United States. Most of us are unable to afford the costs of getting the medical attention that is available in Europe.

If you are in the Los Angeles area, or know others who are, come on out and listen to some great music and support this fundraiser! And please help by sharing the information.

WHAT: “i am a liver! the concert” is a fundraiser benefit show to raise money for cancer treatment. 100% of the ticket sales go to treatment.

FOR WHOM: Lindsey Miller, a 27-year-old pancreatic neuroendocrine cancer patient, who at the age of 25 was diagnosed with stage IV disease.

WHEN: June 9, 2013, music starts at 9 p.m.

WHERE: La Cita, located at 336 S. Hill St in Downtown Los Angeles, CA, (213) 687-7111 (http://lacitabar.com). Must be 21 with ID.

THE ARTISTS:

  • Jenny O. (http://jennyo.com) –Los Angeles singer, musician, and songwriter whose new album, “Automechanic,” was released earlier this year.
  • Band Meets World (http://www.facebook.com/BandMeetsWorld?ref=stream)–Three guys–Jeff, Jake, and Brian–who call themselves, “LA’s phattest ’90s tribute acoustic trio!”
  • Karmina (http://karmina.com)–A sister duo; they have played with artists such as Sheryl Crow and Hanson, and whose single, “The Kiss,” rose to the Top 25 in the Billboard charts.

TICKETS: $10 each. 100% of ticket sales go to benefit Lindsey.

To learn more about Lindsey and her journey with neuroendocrine cancer, follow her blog at: http://iamaliver.wordpress.com .

Thank you, in advance, for helping to raise money and awareness for Neuroendocrine/Carcinoid Cancer.

For more information about Carcinoid/Neuroendocrine cancer, visit the Carcinoid Cancer Foundation website at: http://www.carcinoid.org/ .

* * * * * * * *

Did you know??

(From Carcinoid Cancer Awareness Network website — http://www.carcinoidawareness.org )

  •  Over 90% of all Carcinoid/ NET patients are incorrectly diagnosed and treated for the wrong disease.
  • Average time from initial onset of symptoms to proper diagnosis exceeds five years.
  • Majority of specialists are not aware of current diagnostic and treatment options.
  • Physicians still believe Carcinoid tumors are benign, slow growing and do not metastasize. Countless surgeons trust removal of the tumor will cure the patient and no follow–up is necessary.
  • Irritable Bowel Syndrome (IBS) and Crohn’s are the two most common misdiagnoses for patients with midgut Carcinoid.
  • Most prevalent Carcinoid / NET symptoms are diarrhea, constipation, abdominal pain, wheezing, flushing, heart palpitations, and blood pressure fluctuations.
  • There are a few simple tests to aid with the diagnosis including a 24 hour urine test for 5-HIAA levels. Blood tests include Serum Serotonin, (NSE), Chromogranin-A, Pancreatic peptide, substance P, Gastrin, Neurokin-A.
  • Other Diagnostics include: CT Scans, MRIs, Octreotide Scans, MIBG Scans, and a special pet scan.
  • Current studies suggest that Carcinoid and Neuroendocrine tumors are not as rare once thought. Over 11,000 new patients are diagnosed each year and as many as 125,000 patients are living in the US today–AND the number of diagnoses is increasing by more than 5% annually.

 * * * * * * * *

Original article written and published by author at:  http://www.bubblews.com/news/755773-i-am-a-liver-the-concert-feat-jenny-o-band-meets-world-and-karmina

Copyright © 2013 Coral Levang

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2 thoughts on ““i am a liver!–the concert” to benefit fellow zebra

  1. Why isn’t it covered by insurance? I’ve not heard the term Zebra before related to Cancer. Best of luck to you and Lindsay and others with this rare disease. I hope the concert is a success and helps to spread awareness. Here in Ohio, too far away, but I wonder if there’s something here, must make a note and do some research later.

    1. Sandy…thank you for this comment. And to answer your question, I’m not exactly sure the rationale. I’ve encountered my own issues with insurance. Crazy stuff.

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