Pain Awareness Month 2015 – Feature 6 – Epithelioid hemangioendothelioma (EHE)

HopeDawn R. Scott was only 20 years old in 1998 and a junior in college when she was first diagnosed with Epithelioid Hemangioendothelioma (EHE). The primary site of her EHE was in her right subclavian vein which had metastasized to her lungs. She had about 20 tumors bilaterally. Dawn’s primary surgery was extensive, enduring four rounds of rough and intense chemotherapy. The primary tumor was completely removed via surgery and the lung tumors have been stable since August of 1998. Dawn received her undergrad in 2001 and went on to law school. She graduated again in 2005 and has been practicing law in Wyoming for the last 10 years.

In April of 2013, she met a young woman named Tory who had angiosarcoma. Tory was the first person Dawn met in person that had anything similar to EHE. Tory invited Dawn to join an angiosarcoma group on Facebook. The group joined people from all over the world. An eye-opening experience. During the summer of 2013, Dawn connected with Vlad in a chat forum, his brother, Dmitri, had just been diagnosed with EHE. They talked on the phone and in turn, his mom Jane was introduced to her. Tory passed away in September of that same year and from there Dawn was compelled to start a Facebook group for epithelioid hemangioendothelioma.

“Never did I dream that we would grow to be what we have become and I am so happy that we have one another.” ~Dawn Scott

Jane joined Dawn shortly after she started the group, and gradually they gained key members such as Guy Weinberg (CRAVAT) and Gayla Loller. Cynthia Lee, who had started the HEARD registry years ago before was soon on board, too. Halt EHE thru Analysis, Research and Discovery (H.E.A.R.D.). Jane alerted the group to Dr. Rubin’s work, field of research, study and fundraising for EHE.

Brian Rubin, MD, PhD, is certified by the American Board of Pathology in anatomic pathology. He specializes in the diagnosis of diseases of bone and soft tissue and is an expert in the diagnosis of sarcomas. He’s a world-renowned pathologist and medical researcher who’s brought new hope for patients diagnosed with Epithelioid Hemangioendothelioma (EHE). Dr. Rubin is at the Cleveland Clinic.

“I may have “created” the group but it is truly all of ours and we’d be nowhere without the dedication of so very many.” ~Dawn Scott


Epithelioid Hemangioendothelioma (EHE) Cancer Support Group
https://www.facebook.com/groups/EHEcancer/

This group is for epithelioid hemangioendothelioma (EHE) cancer fighters/survivors, caregivers, friends, and medical professionals. Per Wikipedia, epithelioid hemangioendothelioma (EHE or eHAE) is a rare tumor that typically strikes both women and men who are in their 20s through their 40s. EHE is a vascular cancer, often growing in the liver, lungs, and within the veins of arms and legs. However, it can be found in other locations throughout the body, including the mediastinal region of the chest, in skin and other organs, and also in bones. The prognosis varies for those diagnosed, with many living successfully with the disease while others do not survive.

What is universal is that EHE fighters/survivors are scattered across the globe, and often never have the opportunity to connect with someone else who is fighting the same disease. This group hopes to change that! We want to be a source of support for those fighting the disease as well as those who love them. We also want to raise awareness of this rare form of cancer and advocate for a cure while being a source of knowledge and resources. You do not have to fight this battle alone, we all fight together!

This FB group reflects numerous positive steps that are being made in the awareness, identification, and treatment of EHE. Please check out the links at the top of the page for additional information such as the status of research breakthroughs made by Dr. Brian Rubin at Cleveland Clinic; fundamental information about EHE from CRAVAT (Center for Research and Analysis of VAscular Tumors) Foundation; and of course, PLEASE take a moment to register your information at our new EHE patient registry.

NEWLY DIAGNOSED? Please click on this link: http://www.cravatfoundation.org/newly-diagnosed/ to find key information that will be helpful. Our members bring diverse experiences and information to this group. Please remember that postings on this site are NOT MEDICAL ADVICE and should not be taken as such! Your doctor or doctors should always be the final authority on your treatment measures, supplements, etc. However, we encourage you to educate yourself about this disease, possible treatments and to ask questions in order to have open and honest conversations with your doctors.

Description written by and is the property of Epithelioid Hemangioendothelioma (EHE) Cancer Support Group.

Leadership Team
Dawn R. Scott, Jane Gutkovitch, Gayla Loller, Guy Weinberg, Cynthia Lee, and Jono Granek.

(Closed Group)


Epithelioid hemangioendothelioma is a rare and devastating vascular sarcoma that affects between 100 and 200 people, mostly young adults, each year in the United States. The cancer may arise as a solitary lesion but more commonly presents with metastatic involvement, usually in the liver and lungs. When confined to soft tissue, mortality from epithelioid hemangioendothelioma is between 13% and 18% but increases dramatically to 40% and 65% when it is found in the lungs and livers, respectively. Although localized epithelioid hemangioendothelioma can be surgically resected, currently there is no effective therapy for systemic disease. And because the cancer is so rare, public funding for research is scarce, making the development of targeted therapies difficult.

Citation: Unraveling the Mysteries of Epithelioid Hemangioendothelioma
A Conversation With Brian P. Rubin, MD, PhD By Jo Cavallo, February 10, 2015, Volume 6, Issue 2

See full article below


As some of you may know by now, Kharisma’s Journey hasn’t been a simple one. Since my post February 4, 2015, so much more has been revealed by my own discovery. Through my daughter’s medical records, I learned it’s not just her liver that’s affected, she also has a lesion on her kidney, an accessory spleen (Splenule) and other abnormalities. I highlighted these findings for her appointment less than a month ago. She’s not received any care the last 7 months, we’ve tried, but to no avail. At this last appointment she was put out of work for a minimum of 3 months. This was an emergency appointment scheduled with her primary after her dad took her to the ED for severe pain and she was dismissed without care. 2 weeks later, she finally seen a Gastroenterologist specializing in the liver, and was immediately scheduled for an Endoscopy 2 days later. Yesterday, we got word that Standford Medical Center in San Francisco received an urgent request from our daughters new doctor. They called to schedule an appointment for next Thursday, September 24, 2015 to begin the process for a liver transplant. It’s a consultation visit to get her on the National Transplant Waiting List. I’ve already looked into being a living donor for her. I had part of my own liver removed in July of 2013. Hepatic Hemangioma with small portions of attached benign hepatic parenchyma. Several benign masses that were only discovered as a result of a second Gall bladder surgery. Hemangioma is made up of a tangle of blood vessels. The liver is the only organ in the body that is able to regenerate and a removed or transplanted portion of a liver can rebuild itself to normal capacity within weeks. I could still give a part of mine. It shouldn’t be removed or given more than twice, but she’s my daughter, and there’s not anything I wouldn’t do to give her life again.

In August, I began researching almost endlessly on EHE. Case reports, abstracts, research articles, definitions. In February, I did it all over again. Someone responded to my blog post to refer me to:

Epithelioid Hemangioendothelioma (EHE) Cancer Support Group, so thankful for the reply to share with me its existence.

I sent a request and Jane accepted me in. I was welcomed with open arms. A most loving community. I began talking with Dawn a few months back. Getting to know one another a little at a time. An amazing lady and a courageous friend. I needed these people to know that I wasn’t there to promo anything, so many people jump into groups to do just that. My hope was to learn and I have.  While I do stay in the background more than anything else, I’m truly grateful for each and every one of them.

From what we understand resection isn’t possible for our daughter due the number of lesions, size and location of each. But if it is…


EHE Research – Dr. Brian Rubin
General Fundraising

http://giving.ccf.org/site/TR?px=2538406&fr_id=1360&pg=personal#.VfB_FxFVhBd


Unraveling the Mysteries of Epithelioid Hemangioendothelioma
A Conversation With Brian P. Rubin, MD, PhD
By Jo Cavallo
February 10, 2015, Volume 6, Issue 2

http://www.ascopost.com/issues/february-10,-2015/unraveling-the-mysteries-of-epithelioid-hemangioendothelioma.aspx


Research Gives New Hope To Those With Rare Vascular Cancer August 31, 2011

http://my.clevelandclinic.org/about-cleveland-clinic/newsroom/releases-videos-newsletters/2011-8-31-research-gives-new-hope-to-those-with-rare-vascular-cancer


Patient Crossroads

CRAVAT (Center for Research and Analysis for Vascular Tumors)

https://connect.patientcrossroads.org/?org=cravat

If you are an EHE patient and will be undergoing surgery in the near future, please contact the office of Dr. Brian Rubin, Anatomic Pathology Department of the Cleveland Clinic at 216-445-5551 to see about contributing your tumor specimen to his important research. Thank you.


CRAVAT Foundation
EHE Epithelioid Hemangioendothelioma
Education and Resources for EHE Patients, Their Families, and Doctors

For Newly Diagnosed

http://www.cravatfoundation.org/newly-diagnosed/


More information

Case Report
http://www.amepc.org/tgc/article/view/1119/1455

Radiopaedia
http://radiopaedia.org/articles/hepatic-epithelioid-hemangioendothelioma-1

Overview
http://www.oncologyreviews.org/article/view/259

Wiki
https://en.wikipedia.org/wiki/Epithelioid_hemangioendothelioma


By sharing the resources on this page, you’re gifting new hope back in hopelessness.

Thank you.

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3 thoughts on “Pain Awareness Month 2015 – Feature 6 – Epithelioid hemangioendothelioma (EHE)

  1. I will be praying for Dawn and your daughter Kharisma while they are living with Epithelioid Hemangioendothelioma (EHE). We will also be praying for you Twinkle VanFleet and your family and that your daughter can receive a part of your liver for transplant. We are glad you found a support group.

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    • Thank you Jodi.

      A most compassionate group of people they all are. Heartbreak in the loss of so many lives, inspiration that each are fighting for themselves or their loved one in a way that is most heartfelt. I need to edit the above to add something else that is so important to share from Dawn and in her own words as we spoke…

      “Thank you sweet lady. I may have “created” the group but it is truly all of ours and we’d be nowhere without the dedication of so very many.”

      I hope too that I can donate me for her. I started re taking Milk Thistle to help flush liver toxins months back. I knew the time was coming, I just didn’t know when.

      I also forgot to mention in the above feature that the doctor she has an appointment with this Thursday at Standford is Gabriel Garcia MD. His clinical focus is Hepatology (Liver), Liver Transplantation and Gastroenterology.

      https://med.stanford.edu/profiles/gabriel-garcia

      I’ve read his Curriculum Vitae PDF and his NIH Biosketch PDF (along with a little more snooping, which I’m not entirely done with yet) but I think we’re finally in good hands.

      Thank you again Jodi for your comment and support.

      ~T

      Like

  2. Pingback: Pain Awareness Month 2015 – Mid Month Review with Feature 7- The ACPA- History of Pain Awareness Month | RSD Advisory- Where Chronic Pain & Depression Collide

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