Tuesday, July 29, 2014

Phase 3 trial on aldoxorubicin raises hopes

By Suzie Siegel

Imagine a drug that would be just as effective as Adriamycin (doxorubicin) but could be taken longer, without damaging your heart. That's the dream of aldoxorubicin, which is in a Phase 3 clinical trial for soft-tissue sarcoma in the U.S. and Europe.

Stephanie Zimmerman, MSN
Stephanie Zimmerman of Atlanta shares this dream. At age 8, she was given doxorubicin and underwent chest radiation to cure her of Ewing's sarcoma. Three decades later, her heart failed and she had to have a transplant.

"I look forward to the day that a less cardiotoxic chemotherapeutic agent such as aldoxorubicin is made widely available to adults and children alike," said Zimmerman, president and co-founder of myHeart, yourHands, a nonprofit that raises awareness about late effects of cancer treatment, raises money for research and supports survivors. She has a master's degree in nursing and worked in pediatric oncology before her heart problems.

"No one should be cured of cancer only to lose their hearts, their lives, to a life-threatening late effect such as heart failure. The preliminary findings on aldoxorubicin are encouraging, and oh, how I hope, the clinical trial continues to be promising."

CytRx Corp. of Los Angeles is developing the drug, which is designed to deliver doxorubicin directly into a tumor, leaving healthy tissue unharmed.

Sant Chawla, MD
"We are excited about the potential for aldoxorubicin to safely treat patients with relapsed or refractory soft-tissues sarcomas, many of whom have received and failed to respond to prior doxorubicin therapy," said Sant Chawla, MD, the principal investigator of the trial. "Because of the cardiac safety profile of aldoxorubicin, the FDA is allowing us to treat patients who have received up to 375 mg/m2 of prior doxorubicin, and we can treat until tumor progression is observed." 

Dr. Chawla, director of the Sarcoma Oncology Center in Santa Monica, Calif., has much experience running clinical trials.

"This 100-center, international trial is the first that allows the use of the investigator’s choice of standard soft-tissue sarcoma drugs in the control arm, a situation that should allow rapid recruitment to the study.” In the randomized trial, doctors can choose to compare the drug to doxorubicin, dacarbazine, pazopanib, gemcitabine + docetaxel, or ifosfamide. For more information, go to ClinicalTrials.gov.

Tuesday, July 22, 2014

Spirit of Survival: Ironman Chattanooga

Synovial sarcoma survivor Michael Oyler of Atlanta has partnered with the Sarcoma Alliance to raise funds and awareness by dedicating his first Ironman to all the survivors looking for hope as they struggle with their personal battles, as well as to the memory of those we have lost to this terrible disease.

Everyone has a diagnosis story. What is yours? It is weird that I write this piece during the 2014 World Cup, because my cancer journey began the day of the 2010 World Cup Final. I had a friend over to watch the game that Sunday in July, and during a trip to the bathroom I noticed a fist-sized lump on my right thigh. I am fairly aware of my body and its nuances, and this is without a doubt the first time anything was there. It was colorless and painless, but too big to simply ignore. Immediately I opened my computer and logged into WebMD. After a little research I sort of thought I had a hernia, so I decided to go to the nearest walk-in clinic that is supported by my insurance.

I met with the doctor and he ruled out a hernia, but he wanted to get an ultrasound to get an idea of what it was. He didn’t seem worried that it was a big deal, so why should I? The ultra was inconclusive, so he said we needed to get an MRI. Even at this point he said there was only a small chance that it was anything bad. After the MRI yet again he was not sure, so he was prepared to refer me to a surgeon for a biopsy. At this point I started to get a little worried, and on the advice of a family friend who is a radiologist, I opted to make an appointment with a musculoskeletal oncologist rather than the general surgeon I was initially referred to. It turns out that this was probably the decision that saved my life because immediately upon viewing my MRI images, the specialist knew exactly what I had … sarcoma.

I handled the initial news pretty well I think; his delivery certainly helped, as he was calm and reassuring. Next order of business was the biopsy itself, to identify the type of sarcoma and best course of treatment, as well as CT scans to check for spreading. Flash forward one week and the results were good and bad: The good news was the cancer had not spread; the bad news was that I would have to undergo six cycles of inpatient chemotherapy. For some reason what frightened me most was the chemo, I think because the main image in my mind related to it was sick bald kids with tubes coming out of them. And that is before you learn the horror stories behind the side effects.

So here I am, 28 years old and about to embark on a 6-to-9-month journey involving chemo, radiation, surgery and finger crossing.

What was treatment and life like during treatment? How has life been since treatment ended? I will never forget my appointment before chemo was to begin. My oncologist started reading off the laundry list of short-term and long-term side effects that I could experience due to the drugs: hair loss, heart problems, weight loss, nausea, etc. When she finally got to the last one she ominously said “infertility.” Fertility was the last thing on my mind. It paled in comparison to lifelong heart problems; there are more ways around infertility than a bad ticker after all. After this appointment I shaved my head, and said goodbye to the last full head of thick hair I would ever have #frowneyface. My chemo schedule was for six infusion cycles, with a cycle lasting three weeks. One week of inpatient infusion + two weeks of “recover” and then repeat. This lasted from Labor Day weekend 2010 and ended right after Christmas.

It is very difficult to put a 5-to-6-day inpatient hospital stay in perspective. I would not leave a small room, save for a few laps around the floor a few times a day, pulling my infusion bags on a pole. You cannot shower, and the bed is pretty terrible. Think about how many different settings/environments you find yourself in during a normal day, much less an entire week! On top of that, you have to continuously drink water to flush the medicine through your system. I would say I was peeing 15-20 times a day during a given infusion. Many had it worse though. Some can’t eat, others suffer from nausea, and worst of all, some patients have to fight all alone. I was very blessed to have countless visitors: friends, coworkers and family. My parents are both retired, so they were always willing to hang out and play cards or watch TV. My sister even came down from Nashville a few times to sacrifice her weekends to hang out and show support.

When infusion is over and you go home, that is where the real unpredictability comes into play. The way I understand it is there is a delay of a few days before the initial side effects become evident. About three days after my first infusion, I was suddenly overcome with nausea, and every bone in my body ached to the point that for two straight nights I had to sleep propped up in the corner of my bed. My mom stayed with me at my apartment during this initial episode, which was a huge help. At this stage we really wondered what was in store for the next five cycles, because for most people, the side effects get worse, as you are never quite able to recover totally before the next cycle begins.

I was prepared for such an experience, but whether due to luck or genetics or some other factor this wasn’t the case for me. Instead of each recovery period getting progressively worse, mine got progressively better. It is like the first one shocked my body, but from there onward I was able to adapt and by the fourth cycle I was feeling no side effects in the recovery weeks. I was eating well and in good spirits. I think the hardest part of the off-cycle weeks for chemo was as a single guy who lived alone, there was a lot of time by myself, because while I felt fine, the doctors kept me well informed of my white blood cell count, and there were always 2-4 days when they advised I not go out in public due to how susceptible I would be to infection.

When I look back at treatment in general, you spend so much time and energy on the task at hand that life sort of passes you by. Again, I was very blessed to not only have a successful treatment experience but also a great network supporting me. But you cannot help but feel like the rest of the world is passing you by as you seemingly run in place dealing with cancer. For me July ’10 – May '11 was totally dominated by cancer-related activities; meanwhile, friends and family were getting married, having kids, traveling, getting new jobs, etc. It was very difficult to get back into the swing of living again. You are so used to just sitting around the house that it is an adjustment to “get back out there.”

How did you get into races? How has training gone post-treatment? When I was diagnosed in 2010, I am pretty sure I had no idea what a triathlon was. My personal history with swim/bike/run was somewhat limited outside of light jogging for general fitness. As I was recovering from my surgery in March of 2011 one of my cousins mentioned that I should sign up for one. It turned out there was a short race in August in Athens, Ga., (where I went to college)that was to benefit cancer research. I was sort of looking for a new hobby, and this was for a cause that was close to me, so I gave it a shot.

Michael in the Vienna Marathon.
It was the first organized race of my life, so I wasn’t terribly great, but I wasn’t horrible either (my placing would suggest otherwise). The real takeaway for me was that I was back active again, and competing (sort of) again. It meant a lot to me that the race was roughly a year to the day that I was diagnosed, which really hit home with me on how far I had come in one year. I went from being diagnosed with a disease I had never heard of, to competing in a sport I had never heard of, all in one year. 

From there I did another race that fall, which turned into four in 2012. In 2013 I joined the Atlanta Triathlon Club and my hobby/pet interest soon turned into a way of life, as I was now a part of a group that trained, raced and socialized together. All the while I saw my results slowly improve, which always makes the juice worth the squeeze. You need only look at my overall placing in that first Athens race and the subsequent performances in that race (this year will be four straight):

2011: 211th of 417
2012: 41st of 520
2013: 20th of 482
2014: ????

When I look at my life since cancer, I am not sure what I would be doing with myself if I didn’t have this passion to not only keep me fit and busy, but also to give me a sense of accomplishment.

Why Ironman? For anyone who knows what triathlon is, the main image that comes to mind is the Hawaii Ironman that is the signature event for the entire sport. Many have even casually viewed the annual NBC coverage of the event. As my interest in the sport grew, I knew I eventually wanted to test myself in the most challenging distance around. I thought there would be no better way to show the peaks you can reach even after being slightly derailed by cancer or any other setback.

You could say completing an Ironman requires many of the traits needed to fight cancer: persistence, positive attitude and the ability to rise above pain. What better way to inspire and pay tribute to all those out there fighting this disease?

Why choose to raise awareness and funds for sarcoma? I have done a few local fundraisers for my local hospital over the last three years, but I knew I wanted to cast a wider net with my Ironman fundraiser. I wanted to focus on sarcoma in particular because as anyone who has been diagnosed knows, sarcoma is incredibly rare, and just doesn’t get the attention it deserves from the general public. Ironman is an international event, so it serves as a great opportunity to raise awareness. Partnering with the Alliance was equally important because I feel they give me the greatest opportunity to reach other sarcoma patients/survivors. There are so many people impacted by this that maybe are unsure of what their future holds once they beat this disease. What I want to do is serve as proof that you can not only become whole again, but you can also become a stronger version of the person you once were, in mind and body.

To learn more or to help Michael raise $50 for each of the 140.6 miles (1.2-mile swim, 112-mile bike, and 26.2-mile run) he will travel Sept. 28 in Ironman Chattanooga, please visit his Active page at: http://www.active.com/donate/SOS2014/oylerironman

Monday, July 7, 2014

Jennifer Redding Discusses Fundraising to Benefit Sarcoma Alliance

Jennifer Redding is one of the Sarcoma Alliance volunteers who helps manage our Facebook Group. She is holding an event in her hometown of Hot Springs, Arkansas, on July 27. Here, Jennifer talks about how sarcoma has affected her life and why she is hosting this event.

Without my daughters, I don't think I could be as strong as some people think I am. I say that because those of us with sarcoma know the feelings of day to day combat. We're in the trenches so to speak. Brittany (28) and Emily (23) are the reasons I fight! I also have Jon, Emily's wonderful husband.
I had a lump on my left thigh but I let it go for 6 long years. Why? Don't laugh but I had bought a stick shift and thought the muscle had built up in that leg. I know, but I am not known for my common sense! I didn't feel so bad when I read that a man thought his muscle had built up because he was working out. When I began having excruciating pain, I went to my family physician, and he at first thought I had cellulitis and gave me a round of antibiotics. When the pain came back, he said that it wasn't cellulitis and sent me off for a CT scan. I was diagnosed in March 2012 with sarcoma in my left thigh. I had surgery on April 15 that same year. Dr. Nicholas, my surgical oncologist, said the tumor was the size of a head! I recovered with two more surgeries on my leg. Then I had mets to my left lung in March of 2013, Surgery took care of those. Now we are watching nodules in my right lung, and I have micro fractures in my left femur due to radiation.
I couldn't find much information on sarcoma. I called the American Cancer Society, but they sent me the same information that I had found on the internet myself! I finally found Sarcoma Alliance and felt so welcome that I have stayed ever since. I was asked to be an admin for the support page, and I remember telling Christine Darling that it would be an honor. I find the support and information invaluable.
I decided I wanted to give back to SA for always being there, and I have met so many wonderful friends and fellow warriors that it just seems the right thing to do. So I have planned a fundraiser. Because we want July to be Sarcoma Awareness Month, I planned the event for July 27, 2014. It is from 12-5 at Fat Jacks Oyster Sports Bar and Grill in Hot Springs, Arkansas. There is a $5 cover charge at the door, and there will be live music, a raffle (prizes including a spa day from one of our famous bath houses and even from a local tattoo parlor!), and plenty of food!
When the movie "The Fault in Our Stars" came out in theaters, it gave me the perfect opportunity to gain awareness so I called our local paper and pitched my story. They were interested, and now I am waiting for the call back for the time of the interview! I have even called local TV networks! My two daughters and I will be hitting the pavement with fliers for Historical Downtown Hot Springs! If you can, y'all come on out!
I recommend starting at least 3 months ahead to plan an event. Sooner if you want to contact businesses such as Disney for prizes. That is something I have learned, and I plan on making this an annual event so I will be starting soon after this one is over. It's hard work but when I think that $500.00 will give someone a second opinion, it's a no-brainer--I'll do it!

 To learn more about how you can host an independent event to benefit Sarcoma Alliance, please visit our website. We are grateful to the many people each year who volunteer their time, talents, and efforts to further our mission of improving the lives of those affected by sarcoma.

Monday, June 16, 2014

Chondrosarcoma trial opens nationwide

By Suzie Siegel

An exciting trial for patients with chondrosarcoma is opening at hospitals across the country.

Dr. Jon Trent
"This trial is very important to me as a sarcoma medical oncologist because I see patients with chondrosarcoma for which there are no treatment options," said Jon Trent, MD, PhD, director of the Sarcoma Medical Oncology Research Program at the University of Miami's Sylvester Comprehensive Cancer Center. "I pray every day that this new therapy is as effective as imatinib is in GIST or CML."

Imatinib, a k a Gleevec, is a landmark in the targeted treatment of sarcoma, helping keep people with gastrointestinal stromal tumors (GISTs) alive for years. It was originally developed for chronic myelogenous leukemia (CML).

Sarcoma researchers are looking at drugs used to treat leukemia because both cancers arise from mesenchymal cells. At the annual meeting of the Connective Tissue Oncology Society last fall, physicians joked that “leukemia is just sarcoma of the blood.”

Miriam Zimms in therapy.
"Since chondrosarcoma doesn't respond to chemotherapy and rarely radiation, trials like these are important for patients dealing with local recurrence or metastasis. It also gives those of us who are cancer-free a sense of security to know drugs are being tested," said Miriam Zimms of Tampa, who has survived both triple-negative breast cancer and chondrosarcoma in her left pelvis. "I'm the Bionic Guatemalan since I've had my breasts, ovaries/tubes and left pelvis amputated and rebuilt."

Agios Pharmaceuticals is sponsoring the new trial, called the "Study of Orally Administered AG-120 in Subjects With Advanced Solid Tumors, Including Glioma, With an IDH1 Mutation."

"Our bone sarcoma pathologist, Andrew Rosenberg, was part of a team who recently identified IDH mutation in 70 percent of patients with conventional and dedifferentiated chondrosarcoma," Dr. Trent said. "I found a pharmaceutical company manufacturing an IDH-1 inhibitor for leukemia. I presented the data on IDH-1 mutation in chondrosarcoma, and we have reached an agreement to do a Phase I clinical trial for patients with IDH-1 mutant chondrosarcoma.

"If effective, this drug will bind to the mutant IDH-1 and turn it off, just like turning off a light switch. This would result in the cancer cells turning back into normal cells. I think this stands a very good chance at helping a lot of people affected by chondrosarcoma.

"I am happy to see any patient with chondrosarcoma at our Sarcoma Center. The patient's tumor must have an IDH-1 mutation, which we test for routinely at our institution."

Read the details of the clinical trial here to see if you may be eligible. Patients can call (305) 243-1287 or (305) 243-1000 for an appointment with Dr. Trent.

Monday, December 30, 2013

FAMILY STORY: Donnie Sills

Cindy & Donnie Sills

Another installment in our ongoing series of interviews with those affected by sarcoma. You can see all articles in the series right here.

The dictionary defines survivor as someone who carries on and we often think of those with the illness as the survivor. Many times, it is also true that the family and friends of those afflicted are survivors. That is how I would describe Donnie Sills: a survivor.

What was Cindy’s sarcoma diagnosis?
Cindy was diagnosed with rhabdomyosarcoma on 23 July 2012 – our 35th wedding anniversary.

What started out as what appeared to be a sprained ankle 2.5 months prior led to the diagnosis. She had two separate biopsies from two different hospitals.

Did she have surgery, chemotherapy, radiation, something else?
Cindy initially had both chemo and radiation treatments. She ended up having additional radiation following a brain scan that showed lesions. Her counts never climbed to where they needed to be to continue the chemo.

Chapel Hill is about three hours from here and that’s where most of her treatments were. I coined us Road Warriors.

"we had our first kiss - Cindy initiated"

Tell us how you and Cindy met.
It’s a unique story, how Cindy and I met. I am a sole survivor from a family tragedy when was twelve. My grandmother became my guardian. One day, my aunt took me with her to visit her friend. Cindy, also 12 at the time, was the daughter of my aunt’s friend.

They had horses in a barn and Cindy offered to take me up and show me. It became a family joke through the years that she had ulterior motives in taking me to the barn, but we were only 12 – it was innocent.

Through another twist of fate, Cindy came and lived with my family for a year. We were around 14 at that time. There was some flirting and we had our first kiss (Cindy initiated) to the song Sealed with a Kiss. She moved out and we lost track of one another for a few years.

I joined the Marine Corps when I was 18. Once, while I was on leave, my aunt coaxed me into going over to see Cindy. A year later, we were married.

Talk some about your family. Did you tell everyone right away about Cindy’s diagnosis?
We have three children – a son and two daughters. We also have five grandchildren – 3 boys and two girls. One of our daughters had a baby in January – the other had a baby in February.

We told everyone right away. Cindy had already survived a separate major health issue with a ruptured esophagus in 2004. Everyone knew she was a fighter. They were, of course, saddened about the diagnosis, but fed off her strength.

I was pretty much devastated when I started to learn about this terrible disease, but I gained strength from Cindy as well. I knew it was time to fight with her. Fight by raising awareness and funding for research.

What do you want us to know about Cindy?
Cindy never shed a tear for cancer. This became a theme for the interviews and statements given by Cindy to the media.

She was a loving person with not a mean bone in her body. She lived by the saying, “Don’t sweat the small stuff. It’s all small stuff.”

She was a loving wife, mother, and grandmother. She was the rock of our family.

Any funny family stories you care to share?
Cindy could make one heck of a lasagna. Once when my uncle was visiting, she had gone all out and made a delicious batch. He had been here for a couple of days and decided to leave before dinner. Even though he was persistent about leaving, Cindy had a plan: she hid his dentures! He huffed and puffed, but finally gave in and stayed for dinner. He passed away several years ago, but it has become a family legend to tell the story at big dinners.

Throughout her illness, how did your role as a spouse change?
My role changed quite a bit as I started taking on a lot of tasks that she normally did. Cooking, washing clothes, and dishes now became a norm for me. She could no longer work because of the extensive treatments.

At times, my work schedule was jumbled, but I am fortunate to have a flexible employer.

What things stayed the same?
Our love grew stronger through it all. It was tough watching the physical changes, but she always had a positive outlook through it all.

I can’t think of a thing that stayed the same – our whole life was turned upside down.

Do you remember thinking at some point that things would never go back to the way they were?
Cindy had the ability to bounce back many times, so through that and our faith, I always held out hope that things would get back to some sort of normal.

What were you doing to take care of yourself during this time?
I thought I was doing pretty good with that because I am a runner. I couldn’t keep up the schedule I used to have, but I still got out when I could. I also thought I was eating well.

I say, “I thought,” because I actually ended up going to the emergency room and spending a few days in the hospital for prostatitis. I think ultimately it was from worrying too much about things and that’s when I changed my attitude and fed off Cindy’s positive energy to fight back at the cancer however I could.

Did the two of you talk much about the end of Cindy’s life?
I tried several months before she died, but she wasn’t ready to talk about it. She just had all intentions of beating it.

There were a few things that came up in passing – like her telling the kids they need to keep an eye on me if anything happened to her. She was worried about how hard it would be for me.

Tell us about her final days.
Her final days were under home hospice care. When we first got her home, she was able to sleep in our bed, but eventually, we had to have a hospital bed put in the living room area for her safety and access to her.

There was a steady stream of friends and family. I took many private pictures. She was awake and aware pretty much through, but became unable to talk. She would communicate with her own variety of sign language.

A couple of days before she passed, she held up her fists to say she was still fighting. She also signed to me to stop worrying about her.

There was a lot of cuddling. We would take turns climbing into bed with her.

The hospice nurse ordered me to go get rest one morning when I was pretty much stressed-out from lack of sleep and seeing Cindy’s suffering. That’s when we decided to bring in volunteers to help out.

When did Cindy die?
Cindy died at 2:35 pm on September 6th.

This part, I have only told a few people: she had been suffering bad for the previous 18 hours or so. With every breath she took, there was a sound of pain. My oldest daughter (Amanda) and a friend were with us at the time. We are of faith, but my faith was really being tested.

I told my daughter that I was going away for a minutes. I went out to our sunroom and let out a big yell and had it out with the man up above. When I was done, a calm came over me.

I walked back inside, held Cindy’s hand, and a calm came over her. Her breathing became slow and relaxed. She appeared pain-free and had a peaceful look on her face.

Cindy opened her eyes – something she hadn’t done for a few days. She lovingly looked at our daughter and me. I told Amanda that Cindy was getting ready to go – and then she did.

"I still feel her presence around and it's a good feeling."

How are you doing today?
Today, I’m doing fine. I still feel her presence around and it’s a good feeling. The first month was extremely hard. I would walk into our quiet house and be stricken with sadness and loneliness. Now, when I walk in, I get a tingling sensation and it is comforting. I would like to think of it as her spirit hugging me.

I took a trip to Daytona for Biketoberfest. It was a change of pace that I definitely needed. Riding is a great hobby of mine and it’s also a way to raise awareness.

After I came back, I started in on remodeling our house while still keeping Cindy’s essence around. I purchased a painting from Landon Cooper, founder of Miles 2 Give, and its place is in the room where Cindy passed on. The painting was done in bright rainbow colors in the spirit of Cindy.

Rainbows have a special meaning for us because right after she was diagnosed with RMS, a brilliant rainbow appeared in front of our home. I called it Cindy’s Rainbow and it became a symbol of hope for us. Another rainbow formed there moments after she passed on.

I’ve gotten back into running more and always look for a good charitable race to run in. It’s something I like to do and it’s a way I can pay it forward.

I haven’t really found a new normal yet. I think after I get the house remodeled, I may get into some type of normal. I definitely want to spend more time with my grandkids. That is a high priority for me. They have a way of taking all your cares away.

"I intend to be happy."

What do you want for your future?
I want to continue with Cindy’s legacy of raising awareness. I really want to get heavily involved with that. I want to be around to witness a cure and I want to say that I was a small part in that happening.

I intend to be happy. Cindy would want me to be happy. I plan on living life to its fullest, as I know too darn well that there is no promise of tomorrow.

If you would give one piece of advice to other men who are caring for their very ill spouses, what would it be?
To stick by your wedding vows and take them to heart – in sickness and in health, until death do you part. Never give up on each other.

Cindy never gave up on anything in life. She is my hero.

As with all of our personal stories, please keep in mind that this is Donnie's story. Nothing here is meant to be medical advice and the ideas expressed here are not necessarily those of Sarcoma Alliance - though we wholeheartedly encourage second opinions with well-qualified specialists.

Monday, December 23, 2013

INTERVIEW: Alison Olig, Sarcoma Alliance Executive Director

Alison Olig, Executive Director

Last week, Sarcoma Alliance announced that Alison Olig has been selected as our new Executive Director (ED). In preparing the questions for this first interview with Ali, I thought it would be interesting to start with the same first question I asked of retiring ED, Arthur Beckert . . . .

How much did you know about sarcoma before you started your work with Sarcoma Alliance?
Prior to volunteering with Sarcoma Alliance, most of my sarcoma knowledge came from personal experience. At the age of thirteen, I was diagnosed with alveolar rhabdomyosarcoma. My treatment included eleven rounds of chemotherapy, five surgeries, and radiation. I am happy to share that I have been cancer-free since the end of treatment.

Through my experience with sarcoma, I developed a deep understanding of the physical, mental, and social ramifications of the disease and its treatment, both to patients and caregivers. By volunteering with the Alliance I gained a much broader understanding of sarcoma, the more than fifty subtypes, its treatments, and the various needs of those affected by connective tissue cancers.

How does being a sarcoma patient make you uniquely qualified to be the Executive Director of Sarcoma Alliance?
Two main reasons come to mind:

The first is mentioned above, in that I have a genuine clear understanding of what someone goes through as a sarcoma patient. I know what it feels like to sit in a doctor's office and be told that I have cancer, to deal with side effects that sometimes seem as challenging as the cancer itself, and to watch the toll it takes on those I love.

The second is that I can state, without a doubt, that I am completely and utterly committed to the work of Sarcoma Alliance. I am passionate, dedicated, and will put everything I have into furthering our mission. 

This is not, not will it ever be "just a job."

Can you tell us more about your professional background?
From high school on I hoped to eventually have a career in nonprofit management. In furtherance of that goal I obtained a B.S. in Finance, followed by a J.D. Throughout this time I was also very involved with various nonprofits, gaining valuable experience along the way. 

After graduating from law school, I worked as an attorney and then in regulatory compliance, all while staying committed to developing my nonprofit skill set. I volunteered for Sarcoma Alliance for several years, specifically as a Board Member for the past three years and as a member of the  Executive Committee for a majority of that time.

How will Sarcoma Alliance stay the same under your direction? What changes are you looking forward to? What are the priorities for the Alliance?
Our retiring ED, Arthur Beckert, has accomplished much in support of our mission to provide guidance, education, and support for everyone affected by sarcoma. I hope to continue, and grow upon, this work as well as his commitment to honoring the legacy of our founder, Suzanne Leider. This work will include efforts toward current programs like our Assistance Fund providing grants for second opinion consultations, our Peer-to-Peer Network, and our Facebook Support Group. It will also include new endeavors, such as expanding our working relationship with social workers and increasing sarcoma awareness among general practitioners.

The biggest challenge at Sarcoma Alliance has been obtaining the funding necessary to grow programs. I will work with our Board to generate new sources of funding - and to assist those who wish to fundraise on our behalf - to ensure continued support of the sarcoma community.

Finally, what do you want us to know about you?
How incredibly honored, humbled, and excited I am to have this opportunity. 

But for a little about myself - I am married to an amazing man, and together we love spending time with our six-month old son, two dogs, and two cats. They keep me laughing and on my toes, and I wouldn't have it any other way!

To learn more about Sarcoma Alliance and our mission to support those affected by sarcoma, please visit our website.

Tuesday, December 17, 2013

ANNOUNCEMENT: Alison Olig, Executive Director

Sarcoma Alliance has announced the selection of Alison Olig to the position of Executive Director. Prior to accepting her new position with the non-profit organization, Ms. Olig had served on the Board of Directors and was a member of the Executive Committee.  Arthur Beckert, Executive Director for the past ten years, is assisting with the transition leading up to his retirement in January, 2014.

"After an extensive search involving candidates from around the country, we couldn't be more pleased to have Alison on board as Executive Director. She has already made a tremendous impact as a Sarcoma Alliance board member and we are confident she will bring the same energy, intelligence and compassion to her new role as Executive Director," said James Johnston, President of the Alliance.

Ms. Olig herself was diagnosed with sarcoma at the age of thirteen.  "Through my experience with sarcoma, I developed a deep understanding of the physical, mental and social ramifications of the disease and its treatment, both to patients and caregivers," said Ms. Olig.

Sarcoma Alliance is the only national organization with the sole mission of providing information, guidance, and support for people affected by sarcoma - a set of rare connective tissue cancers. The Alliance also offers grants for patients seeking second medical opinions. 

For more information about Sarcoma Alliance, please visit sarcomaalliance.org or call 415.381.7236

Monday, December 16, 2013


Ilene Fishman Goodman
The feedback from our series of personal stories has been incredible. View all of the stories here. And please consider joining us over on Facebook for more discussion, information, and support. 

When I approached Ilene about participating, her response was quick: "I would love to be interviewed. . . I really like sharing my story with others to give them hope." 

This is her story ...

What was your sarcoma diagnosis?

In what year were you first diagnosed?
1995, when I was 24 years old.

How are you feeling today?
Really good.

Tell us a little about yourself.
I’m married. No children, two cats. Right now, I’m unemployed, but I did administrative work for 20 years. I live in Baltimore, Maryland, and I like to go shopping, go out with my girlfriends to dinner, and exercise when I can.

"They said it was a virus"

What is your diagnosis story?
Before I found out I had cancer, I was pregnant with our first child. At 28 weeks, I started getting swelling in areas you shouldn’t get swelling from pregnancy. Eventually, I went to the hospital and they found out that I had a lot fluid around my heart and lungs. They said it was a virus. I stayed in the hospital for a week to have the fluid drained off from my heart and each lung.

I went home and felt much better.  At 32 weeks, I went for an ultrasound and they couldn’t find the baby’s heartbeat. Unfortunately, the baby had passed away.

Two weeks later, I wasn’t feeling well. I had a rapid heartbeat and was out of breath. My parents took me to the hospital where I was told I had fluid around my heart again. They decided to put a window by my heart so the fluid would just drain out if it happened again. It was when I went in for that surgery that they found the tumor.

Did you have surgery, chemotherapy, radiation, something else?
I had eight rounds of chemotherapy (called MAID) over a period of around eight months. Every three weeks, I went to the hospital as an inpatient for four days for the chemo treatments.

After chemotherapy, I had a ten hour surgery to remove the tumor. It was growing from my diaphragm, close to my heart and into my liver. They removed my diaphragm and replaced it with Gortex and mesh. They removed the portion of my liver that was involved with the tumor. However, the liver can regenerate itself.

"I feel really good about my health now"

Was your life on hold while you battled sarcoma?
As far as my job was concerned, it was. I was very fortunate that I worked for a small company – they kept my job until I got better.

As far as my life and living it, I would say when I felt good, I would go out and do things as much as I could. I had six weeks between the end of chemo and my surgery so my body could recover from the chemo. In this time, I planned and did so many things with family and friends. Not because I didn’t think I was going to make it through the surgery, but because during the chemo, at times I felt like a prisoner and having this break before the surgery – I wanted to do as much as I could.

Have you had any long-term side effects from treatment?
Not really. I do sometimes feel I have chemo brain, but other than that, no long-term side effects.

Are you still seeing your treating physicians?
I see the surgeon who did the surgery once a year and get a scan before I see him.

How do you feel about your health now?
I feel really good about my health now. During the first ten years or so, I would definitely get anxious, but only right before my scans and check-up with my doctor.

The rest of the time, I wouldn’t think about it because I have always felt that if I thought about it or worried constantly, then the cancer would have won and I won’t allow that to happen.

As an 18 year survivor, it really is never on my mind anymore.

How were relationships with your family and friends impacted?
Although we were a close family before, my relationship with my family grew closer.

As far as my friends were concerned, I found out who my true friends were. A friend I thought was close turned out to abandon me during my illness while another friend who I wasn’t very close with was there during my entire illness.

How is your life the same or different now?
My life is very different since I was diagnosed and treated for my cancer. I am not the same person I was before I had cancer. I am a stronger, much more confident person. Once you beat something like cancer, you can never be the same person again.

I have given speeches and talked with people who were newly diagnosed and met some amazing people. I also try to live every day to the fullest because you never know what will happen tomorrow.

I appreciate the small things that I never really noticed before – like when the flowers bloom in the springtime, stars in the sky, and the smell of the ocean.

"...they only expected me to live six months"

And, finally, what is your biggest piece of advice for someone who is newly diagnosed with sarcoma?
No matter how dim it may look, never ever give up.

When I was diagnosed, I was told they only expected me to live six months. Here I am 18 years later.

Surviving and going strong.

A reminder: Ilene's story is her own personal story. Nothing here is meant to be medical advice and any views expressed here are not necessarily those of Sarcoma Alliance. (Though we do believe in living life to the fullest.)