Fighting Rare Cancer: EHE

Dear friends,


We are a rare cancer community that needs your help, and we need it now. Epithelioid Hemangioendothelioma (EHE) is a vascular sarcoma that mostly afflicts young adults. EHE tumors start off slow-growing but eventually accelerate - they are ticking time bombs, resistant to all current treatments. Dr. Brian Rubin at Cleveland Clinic recently discovered this cancer's unique genetic profile. Today, he has the only stable EHE cell line in the world, and is hard at work developing a targeted therapy and the first EHE clinical trial in history. He is the only EHE researcher having major breakthroughs - breakthroughs that can, and will save lives.

WE NEED YOUR HELP to fund his continuing research. Due to his latest breakthroughs, we are confident that The National Cancer Institute will fund Dr. Rubin for 2015. But that is time that we do not have. Interrupting his current research and momentum would cost lives. It is up to us, and now to you, to help raise sufficient funds to keep his work going.

When you pitch in, giving whatever you can, you help continue work that directly and critically benefits the EHE and sarcoma communities.


Please take a moment to meet some of the members of the growing EHE community below, and pitch in however you can. With all our hearts, thank you.



Dmitriy is 25 years old, and was about to apply to grad school when he was diagnosed with EHE. He had a huge (15x10 cm) tumor removed from the chest but still has many metastases in the liver and the lungs. His oncologist tried standard chemotherapy. It didn't work. Neither the liver nor lung tumors can be totally removed because there are too many of them. We are living on a ticking bomb.
"“ Dmitriy's mom



In 1998, at the age of 20, I was diagnosed with EHE. My primary tumor was located in my mediastinal region of my chest and had metastasized to my lungs (about 20 nodules bilaterally). My family and I had a difficult time finding an oncologist who would treat me, and even then, I had to travel to a major medical center to get the "recipe" for the chemo cocktail that at that time was the suggested treatment for EHE. Several major surgeries and four unsuccessful (and miserable) chemo treatments later, I opted to take a "wait and see" approach rather than undergo another major surgery to remove the tumors from my lungs. Thankfully, 15 plus years later, I am still stable as my primary tumor has not recurred and the tumors in my lungs have shown no growth. However, I still fear my EHE will again become aggressive and I do not want debilitating surgery to be my only option for survival. A cure is crucial!
"“ Dawn S.



My name is Megan, and I was diagnosed with EHE in my vertebral column three years ago. It took months of appointments to various specialists, as well as imaging and scans, before a large mass was found in my vertebral column. I was treated immediately with chemo and radiation but because of complications from the chemo, I was forced to stop the treatment. My treatment was urgent, so my husband and I had no time to discuss the options to preserve my fertility. After treatment I learned that I was forced into an early menopause at 30 years old, ruining my chances of being able to naturally conceive a child. Being diagnosed with cancer in my 20's has forced my husband and I to change our idea of what makes up a family. We have one dog that we rescued from the local shelter that we consider our "baby". The tumor has been showing slight progression and I deal with daily back pain as part of my new normal. I yearn for the day when all EHE patients can have certainty in their future and live free from disease!
-- Megan Mendez



I'm a 43 year old wife and mother of two active boys. My August 2013 EHE diagnosis changed the course of my life dramatically. I'm unable to work, play with my kids, ride bikes, go hiking. My EHE tumors are on both lungs and severely limit my breathing. This research gives me hope that I can lead that active lifestyle I once did.
-- Anna Kuhn



I am 34. I was diagnosed with EHE in my L5 vertebrae back in May [of 2013]. Prior to and after my biopsy, everyone thought I had a benign tumor in my spine. The hospital in which I had the biopsy had to send the specimen to Clinic where my diagnosis was confirmed. The tumor was removed during the biopsy, but has since grown back. I also have small nodules in my lungs. I am in constant pain and no one seems to be able to even help me. My oncologist doesn't know what to do, nor does my new neurosurgeon. They want to remove my entire vertebral body and replace it with a bone graft. I just don't like this idea and I am tired of being a lab rat.
"“ Tiff B.



I am a 33-year-old male in and I was diagnosed with EHE this past spring. I had 4 small tumors in the right lobe of my liver and upon further full body scans and bone scans no other tumors were found. I underwent a resection on August 7th 2013 and it was very successful, all of the tumors were removed with clear margins. It's a very hard thing to go through cancer at a young age with 2 small daughters and a wife who depend on me but when it's a rare cancer like EHE and nobody has answers it's even more scary and frustrating. But with the progress I'm hearing about from Dr. Rubin I feel very hopeful that a cure can be found. I was lucky that I was able to have them removed and feel very positive about my future but know it can come back at any time, so it is very important that we find a cure for people like me and those who cannot have surgery. We all have to stand tall and stay hopeful.
"“ J. Flemming




I hear that EHE Research is close to being able to start up a trial for a therapy targeted at EHE cells from the biological level. This could change prognosis of this disease from pot luck to pretty good odds that therapy XYZ will help. All I can do now, is hope and pray that these targeted therapies make their way to known sarcoma oncologists' circles soon so the guessing game can stop and my son's chances of having his father at his graduation are better than hitting that one small green balloon on that 20 foot wall from way over here.
-Howard Leibov
To hear more stories visit https://www.facebook.com/groups/EHEcancer/


Donations

  • Anonymous 
    • $100 
    • 53 mos
  • Anonymous 
    • $100 
    • 65 mos
  • Sage Gauthier 
    • $20 
    • 65 mos
  • Jaime Totti 
    • $50 
    • 73 mos
  • Julia Kaminsky 
    • $50 
    • 75 mos
See all

Organizer

Jane Gutkovich 
Organizer
Forest Hills, NY
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