ANNOUNCEMENT: Sarcoma Alliance Store - Now Open

Sarcoma Alliance T-Shirt

Great big happy shopping news from us today:   Our Zazzle Store is open!

What the heck is Zazzle?  Basically, Zazzle allows us to easily offer a huge variety of  Sarcoma Alliance gear to our wonderful supporters. Like the t-shirt above.

And the snazzy luggage tag below....

Sarcoma awareness luggage tag from Sarcoma Alliance

And..oh my goodness...adorable clothing for your best friend....

How Cute is This? Doggy Shirt from Sarcoma Alliance

How about a little something for your morning commute...

Travel Mug - Sarcoma Alliance

You know what's really cool about Zazzle?  You can customize some of the items.

Want a stylish black shirt?  No sweat!

Sarcoma Alliance Black T-Shirt

And another great thing about Zazzle?  Returns. If you don't love it, they'll take it back. No questions asked.  We're pretty sure you're going to love everything there, though.  The Women's Shirt, for example, has more 500 reviews and received around 4.5 out of 5 stars.

As you use your swag from the Sarcoma Alliance Zazzle shop, you spread sarcoma awareness - and you'll be doing a great thing for others because a full 20% of everything you buy will come to Sarcoma Alliance.

So..what are you waiting for?  Go buy that keychain!

Researchers redefine sarcoma subtypes

By Suzie Siegel

Advances in science and collaboration across medical disciplines are redefining sarcoma subtypes.

Dr. Brian Van Tine

"Nowhere is that more evident than at CTOS meetings," said Brian Van Tine, MD, PhD, director of the sarcoma program at Barnes and Jewish Hospital at Washington University in St. Louis. "We are beginning to understand the complexity of sarcoma and how we will use this to design new therapies."

Dr. Van Tine will discuss new targets for metabolic therapies Thursday at the annual meeting of the Connective Tissue Oncology Society in New York.

"In the future," he said, "I believe we will not only use genomic information to subclassify sarcoma, but to also make treatment decisions based on the DNA sequence, the RNA expression, the activated proteins and the metabolites that are specific to an individual’s sarcoma. The work currently being done and presented at CTOS should soon have direct clinical application."

"Clearly the field of oncology is moving towards personalizing therapies and identifying new targets," said CTOS President Shreyaskumar R. Patel, MD, medical director of the sarcoma center at the M.D. Anderson Cancer Center in Houston."This trend is also true for musculoskeletal tumors, although slower due to the rarity and complexity of these malignancies."

The dictionary records the first use of the word "sarcoma" in 1804. In recent years, more than 50 subtypes have been identified, generally based on the normal cells they most resemble. For example, a leiomyoma (also called a fibroid) is a benign growth of smooth-muscle cells. A leiomyosarcoma is the malignant version.

Dr. Dei Tos

The World Health Organization classifies sarcomas. In 2002, for the first time, WHO used molecular genetics and immunohistochemical staining to refine its classifications, said Angelo Paolo Dei Tos, MD, who serves on the CTOS Board of Directors. He directs the department of oncology and anatomic pathology at the General Hospital of Treviso, Italy.

In January, WHO updated the 2002 categories. Dr. Dei Tos said he expects the next update in five or six years, as genetic aberrations are increasingly used to group tumors into categories.

This year, he said, WHO got rid of the subtypes “hemangiopericytoma” and “malignant fibrous histiocytoma,” commonly used in the 1980s and '90s. The former was divided into benign tumors; solitary fibrous tumors, which can be benign or malignant; synovial sarcoma; and malignant peripheral nerve sheath tumor.

Malignant fibrous histiocytomas were divided into leiomyosarcomas, rhabdomyosarcomas, dedifferentiated liposarcomas, undifferentiated pleomorphic sarcomas as well as lymphomas, melanomas and sarcomatoid variations of carcinomas.

In 2002, for the first time, WHO used clinical data to better determine the malignant potential of tumors, Dr. Dei Tos said. They were divided into benign, intermediate malignancies and malignant. The recent report substitutes two new categories for the term "intermediate malignancy":

• locally aggressive tumors that don't spread elsewhere, such as desmoid fibromatosis
• lesions that rarely spread (or metastasize), such as plexiform fibrohistiocytic tumor.

A few new subtypes have been added, such as pseudomyogenic hemangioendothelioma, he said.

International sarcoma meeting starts next week

By Suzie Siegel

At least 500 people from around the world are expected at the Connective Tissue Oncology Society's annual meeting Oct. 30 to Nov. 2 in New York City.

Dr. Patel

"CTOS represents the largest collection of sarcoma aficionados, including all disciplines – surgery, medicine, pediatrics, radiology, pathology and basic science. Also included are important components like nursing, patient advocacy groups and pharma partners," said President Shreyaskumar R. Patel, MD. Dr. Patel is the medical director of the sarcoma center and a distinguished professor of medicine at the University of Texas M.D. Anderson Cancer Center in Houston.

"Trends in this meeting include more detailed analysis of the genetic aspects of sarcomas, many of which have simpler defects like leukemias and lymphomas. Despite these similarities, it is not yet clear why leukemias and lymphomas are sensitive to chemotherapy while sarcomas are often resistant," said CTOS Program Chair Robert Maki, MD, PhD, a professor of medicine, pediatrics and orthopedics as well as medical director of the sarcoma program at Mount Sinai Medical Center in New York.

"There will be expert lectures on the development of new classes of drugs by Kevan Shokat, PhD, of the University of California-San Francisco, as well as a clinical lecture on sarcoma management by one of the recognized leaders in the field, Piero Picci, MD, of the Istituti Rizzoli in Bologna, Italy, one of the world's great bone sarcoma centers.

"In a similar light, management of complicated cases and new and emerging drugs to be considered for sarcoma treatment will be discussed at this year's meeting."

Our executive director will be there, as always. But we will also have five Alliance volunteers there, the most ever, at our own expense. We go to make connections and learn, in hopes we can help others.

Dr. Maki

"Sarcomas constitute fewer than 1 percent of cancers in adults, and about 15 percent of cancers in children," Dr. Maki said. "Perhaps, because of their rarity, they are a common diagnosis on television dramas like 'House.' But physicians don't see as many happy endings in real life.

"Sarcomas are cruel," he said. "Discoveries of new sarcoma treatments have been relatively few, compared with breast or prostate cancer. This is due, in part, to the funding set aside for these rare diseases.

"Our frustrations with the slow progress are balanced by the desire to help families, where we still too often see either children, young adults, or parents with young children dying of these cancers."

The Alliance recommends patients see experts. "But this is increasingly difficult," Dr. Maki said, "with the funneling of patients by insurance plans to general oncologists who don't see very many of these sarcomas as part of their practice."

The roots of CTOS go back 20 years, when a wealthy patient invited physicians and others interested in sarcoma to a meeting in Boca Raton, Fla. He believed better communication among experts would lead to better patient care. Herman Suit, MD, of Massachusetts General Hospital in Boston proposed that he and his colleagues keep meeting "to generate a more coordinated attack on sarcomas," Dr. Maki said.

CTOS, based in Alexandria, Va., formed in 1995. Its meetings alternate between North America and Europe. Next year's meeting will be in Berlin.

In 1999, a sarcoma survivor founded our nonprofit. The Sarcoma Alliance for Research Through Collaboration (SARC) was founded in 2003 at the University of Michigan in Ann Arbor. SARC brings together physicians from different institutions to collaborate on clinical trials. It will celebrate its 10th anniversary and discuss the latest on its clinical trials as part of the CTOS meeting.

PATIENT STORY: Liselle Reppert

Today, we begin a new feature - interviews with sarcoma patients, caretakers, family, and friends.

After talking the amazing Liselle Reppert into being our first interview, I closed my email with, "Let me know what you're thinking."

The first line of her two-part (!!) email back to me was, "What am I thinking? 'Oh Boy' and on so many levels."

Let's dive right in...

Liselle Reppert

What is your sarcoma diagnosis?

Undifferentiated Pleomorphic Leiomyosarcoma. There are characteristics of rhabdamyosarcoma that had them scratching their heads and may complicate my treatment later but for now we are going with leiomyo.

In what year were you first diagnosed?

My diagnosis started in May of 2013, but I found "Fred" in February of 2012. Yes. I sat on him for over a year and would most likely still be sitting on him if my friend Ashley hadn't taken control.  

Have you had surgery, chemotherapy, radiation treatments, something else? 

So far I have had two surgeries. One to remove "Fred," a 27cm incision to take out a 16x16x10cm section with clear margins. And another surgery to shoot blue dye into the lymph vessels when i stopped healing because edema kept re-opening my leg.   (Interesting stuff...made me pee like a Smurf.) 

And I found the Sarcoma Alliance while I was recovering with my wound-vac, which kept me in the hospital for 18 days.

I have only done one round of doxorubicin. 

Had you heard of sarcoma before you were diagnosed?

It was in college that I first heard of sarcoma and promptly forgot about it. Though I now recall every word of the brief lecture in my human anatomy classes.

"A lot can happen in 10 years
and I would like a chance to see it." 

What is your prognosis?

Since my last surgery I have had 3 CAT and 2 MRI scans. The plan was hunt, peck, and zap. Unfortunately, one lung met is inoperable and sitting in a nest that one-quarter of my blood volume passes through with every heartbeat. Now, we are looking to control its growth.

As I told my doctors, "A lot can happen in 10 years and I would like a chance to see it." Regardless, whether surgery advances or a cure is found, I want to help those who come after me. 

As things stand...I'm terminal.

That is NOT to say that sarcoma is going to kill me because it is NOT. From the moment we are born...we begin to die. That is what defines life. It is the definitive that separates life from existence. 

I am living.

How old are you?

44

"My inability to work dragged my family all
the way to the gutter. We live in a motel."

Where do you live?

Technically...I am homeless. My inability to work dragged my family all the way to the gutter.

We live in a motel. We could have moved out but God gave us the most incredible dog that can tell when i am going to fall. There are no apartments here that will accept a 95 pound dog without a service license and I have no way of getting him certified. We would rather live in a motel than risk losing my dog and the peace of mind he brings my family.

Tell us a little about you. Are you married, kids, pets? What do (or did) you do for a living?

I grew up in Long Beach, California; I live in Mount Vernon, Washington, with my husband, two grown sons, and my dog.

What is your biggest piece of advice for someone who is newly diagnosed with sarcoma?

My best piece of advice is be organized. NOTHING can prepare you for the chaos of hearing those three words from our nightmares. Getting organized gets your head back in the game.

Everyone has a diagnosis story. What is yours?

I'd lost some weight and the leftover skin flap shrank on one leg but not the other so I watched it. One day, I found a golf ball-sized sphere in the fat flap. 

"Oh great, a big cyst," I hoped. That was in February of 2012. I checked it periodically and by September there was no doubt I had a tumor that more than likely wasn't benign. Unfortunately, I had no insurance and having been disabled for the last eleven years and having landed in the gap between worker's compensation, social security, disability, and welfare, I had no hope of getting help. 

I went to the emergency room expecting to have to file bankruptcy as soon as they told me what was going to kill me and kicked me to the curb, but that's not what happened.  

Skagit Valley Hospital kept me and sent my labwork to California when the local lab couldn't give a clear diagnosis. They also got me the best oncology team they had and stayed on top of on welfare until they agreed to pay my ongoing bills.

Tell us why you name your tumors?

That is comedy relief. At first, my husband couldn’t even tolerate the word “tumor,” forget about lieomyosarcoma. Big scary “cancer” just ticked him and oldest son right off. My youngest understood that I think out loud when I’m getting a handle on a situation.

I thought of naming it “Henry” and the mets would have been “Winkler” and “Ford.”

My mother-in-love named the mets saying they were in my chest so they had to be girls.  My Sarcoma Alliance friends named a lymphnode that turned traitor and my named the latest met.

I have some more that need names. Any ideas?

How are you feeling today?

Actually, I feel surprisingly good, not at all what I expected.

"The only side effect so far is my
hair loss and that is no biggy."

What side effects of treatment are you experiencing?

Because of a pre-existing penchant for hyperemesis, we hit the antiemetics really hard.

The only side effect so far is my hair loss and that is no biggy.

What keeps you inspired / motivated?

How can I be so optimistic??? How can I not. From the get go, God has had His hand on this whole fiasco. 

Since you brought it up, how has your relationship with God been challenged throughout all of this?

My relationship with God is a little more blatant. He had always been obvious in my life, but I sometimes seemed to be sleeping on the job – letting Him appear to be taking a back burner in my active life.

When you were a kid, what did you want to be when you grew up?

As a child, I wanted to be a banker and after graduating from high school, I went into banking. Unfortunately, money weighs a ton and I injured my back forcing me to change careers. Several minor injuries later, two discs herniated leaving me partially paralyzed with chronic pain and facing full paralyzation. 

Sometimes God realizes you are stubborn and he pulls a pin to put on your brakes for you.

At one point, I studied to be a stenographer. I developed tendonitis. Rains...pours...I never understood what the lesson was. Still don't get it. :-P 

I just know He has a point. Somewhere.

One thing to keep in mind with this and all of our interviews - these are the words and experiences of the person being interviewed. The attorneys would like me to remind you that the viewpoints expressed here do not necessarily represent those of Sarcoma Alliance and should not be taken as medical advice.