How the LA support group began

The late Suzanne Leider, co-founder of the Sarcoma Alliance, holds a poster at the first meeting. Dave Murphy is on the left.  In back, from left, are board member Marita Tullius and Brian and Kendra Krause. Can you help us identify the man and woman on the right?

By Dave Murphy

After my wife was diagnosed with leiomyosarcoma in 1998, I joined the Association of Cancer Online Resource’s LMS listserv. She died the next year, after her diagnosis was switched to malignant fibrous histiocytosis, and I joined ACOR’s Sarcoma list.

Also in 1999, Suzanne Leider founded the Sarcoma Alliance. I first met her online and then in person. I began to meet other patients and their families and friends.

The Orthopaedic Institute for Children in Los Angeles let us have a sarcoma support group in the spring of 2001. After two monthly meetings, sarcoma survivor Kirk Souder said we could meet at his office in Marina del Rey. We met several times there.

Kirk, who had a marketing company, had done some work for the Wellness Community (a cancer-support organization now called the Cancer Support Community. He contacted the organization to see if we could meet there. A local branch didn’t think we could get enough participants, but the South Bay Cities Wellness Community in Redondo Beach gave us a chance.

Sarcoma support group in Redondo Beach in 2003.

Our first meeting there was in 2002, the year I joined the Sarcoma Alliance's board of directors. The meeting attracted only three people, but by the end of 2003, we were well on our way to establishing a monthly group for support and information exchange. Networking is crucial for a rare cancer, especially in the days when so little information was online.

In 2004 I attended the American Association for Cancer Research  conference as part of the Scientist-Survivor Advocate Program (SSP). Dr. Karen Antman, a sarcoma specialist who is now dean of Boston University Medical School, was AACR president that year. Her address was: “Sarcomas, A Model for Research of Less Common Malignancies.”

In 2005 I was accepted to AACR’s SSP program again, and my scientist mentor was Dr. Lee Helman, a sarcoma specialist who now heads the Pediatric Oncology Branch of the National Cancer Institute. I came back from the AACR conferences able to tell sarcoma patients that research is being done to benefit them. I could give them hope.

I waited another 10 years before reapplying to AACR. After the 2014 conference, I reported back on how whole genomic sequencing was changing research.

Meanwhile, our L.A. area sarcoma support group continues to thrive. The last meeting, on Sept. 13, had eight people with sarcoma and eight caregivers or family members. The Sarcoma Alliance continues to promote in-person meetings with others. To quote our mission statement: “The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support.”

A Parent's Story: Heather Patryas-Valentin (Baby Olivia)

Heather Patryas-Valentin is Olivia’s mom. Olivia was diagnosed with embroynal rhabdomyosarcoma at just six months of age.

 This is their story . . .

 I have two stepchildren - 14 and 12 years old, both boys. We have two Jack Russell dogs. Before Olivia’s diagnosis, we were your average family.

Diagnosis and Treatment...

My husband was changing Olivia's diaper and noticed a egg shaped lump on the right side, above her lady parts. Olivia was two months old at the time.

Were you immediately referred to a specialist?

No, we went to an overnight pediatrician and they referred us to Nemours Hospital because they were thinking it was a hernia and an ovary had popped out of place.

Nemours fixed the hernia the next day, but her ultrasound showed two normally placed ovaries. They thought maybe she had a third ovary.  

A month later after a follow-up ultrasound, they discovered this lump had moved to the left side. The doctors didn’t know what it was. Nemours planned to remove this lump but our insurance wouldn't cover it and we couldn't use Nemours Hospital anymore.

A month later we found another doctor affiliated with Arnold Palmer Hospital. He wanted to watch the lump to see if it grew or shrunk. By this time Olivia was four months old.

We followed the doctor’s suggestion and waited to watch the mystery lump.

 Olivia was now six months old and the time came to see if the lump grew or shrunk. The ultrasound showed that it had tripled in size in just two months.

The doctor decided to operate right away and take the growth out. He assured us this is common and not to worry. It wasn't even 24 hours after we were released from the hospital that the doctor wanted us back at his office to discuss something.

I wasn't thinking it was going to be anything bad, so I took Olivia by myself to that appointment. As soon as the doctor came in he asked where my husband was and I knew something was wrong. He said the tumor they removed was cancerous and it was the size of an orange.

That same day we met with our oncologist and that next week Olivia started chemotherapy. 

She has had three surgeries and just finished chemo this month.

Let’s Get Personal

I want parents to be aware of their babies bodies and how they act. It’s better to be overly cautious than to be too late.  

Being a first time mom, this has been really rough. I knew I was always meant to be a mom. Ask any women through pregnancy what they want and most common answer is a healthy baby. That's all I wanted and then when you find out your baby is sick and has only been in your life for such a short period of time, it crushes you.

I’ve never been sick or broken any bones, and my child is born with cancer. All you think is how you would give anything to trade places with them.

When I first found out all I could do is cry and think, “Oh, my god, people die from cancer. What am I going to do?”

I was like this for probably the first week and finally I had my breaking point. I broke down and had to accept our new life. After seeing Olivia’s smiles after each surgery, I thought, “Why am I crying if she’s not. If she can smile so can I and ever since then we have been going with the flow and smiling everyday.”

We thought about going to counseling. To be honest, my relationship with my husband wasn't doing to good before this happened. We had looked into getting marriage counseling. Since all this started our relationship has gotten so strong we didn't feel the need for it.

When your child is sick nothing else matters and eventually things just worked out and fell into place. We are strong for Olivia and lean on each other now more then ever. I couldn't go through this without him and vice versa.

On Religion . . .

I am a Catholic but do not go to church on a regular basis. I have always believed in God and doing what’s right. After Olivia’s diagnosis, I really began to question everything. I was mad and angry as to why God would do this to me and my family. A family I had always asked for. I never did anything bad in my life. I’m not perfect, but morally I’ve always tried to make the right choices. So I questioned my faith a lot and still do. But that's life.

No one asks for cancer or anything bad to happen. I just figure He is challenging me and I’m up for the challenge. If I love my daughter as much as I say I do, then I will do anything and everything for her and fight this battle with her. I will only come out a stronger person after all this and so will Olivia.

The Future . . .

I worry all the time. Telling me not to worry is like telling me not to breathe. I cant. I stay focused by taking care of Olivia like I would cancer or not. She is hitting all her milestones and I couldn't be happier. We try not to shelter her and just be a normal baby. We go to work and have a routine like anyone else. Except our routine involves hospitals and chemo.

About Olivia . . .

Olivia smiles through everything. When all this started I was so worried she wouldn't be a happy baby. But I don't even think about that now because her laugh and smile remind me everyday that she is happy and is going to be ok. Everyone that meets her instantly falls in love. Even nurses and doctors that aren't with Olivia come by her room cause they hear Princess Olivia is here and they have to see her.

I couldn't have asked for a better baby.

Olivia has completed all of her scheduled treatments. She will have scans in a few weeks and if all is well, her port will be removed.

Today is Olivia's first birthday. Happy Birthday, baby.

To learn more about sarcoma and how you can help, please visit our website.

SURVIVOR INTERVIEW: Rob Ambrose

Rob Ambrose is a 36 year old middle school science teacher.  He lives in Somerville, New Jersey with his beautiful wife Kate and their two cats.  In May of this year, Rob was diagnosed with myxoid liposarcoma. 

This is Rob’s story . . . 

How were you diagnosed?

In February 2014, I injured my lower left leg while training for the NYC half marathon.  I began physical therapy shortly after the injury.  The physical therapist that was seeing me took notice of my extremely tight left hamstring and mentioned that she could feel a lot of knots.  I had been told something similar when I received a massage earlier that winter.  It turned out that my injury was a stress fracture in my left fibula so there was no need for further physical therapy, and there was no follow-up on the tight hamstring.

On May 3, 2014, my wife and I were at Macy's shopping for new jeans.  The first pair of jeans I tried on fit very strangely - they were very tight around my left thigh but not so tight around the right.  I noticed the same thing with other pairs that I tried on.  I became very concerned and my wife, Kate, took a closer look at my thigh when we got home.  We measured my two thighs for comparison and the left one was definitely larger than the right.  Kate also noticed that it looked swollen in comparison to the right leg.  Since it was a Saturday evening and our primary doctor's office was not open, we went to the emergency room at our local hospital.   

The hospital took an x-ray and CAT scan of my leg, which revealed a large mass.  Kate and I were shocked by this - neither of us expected the swelling to be anything serious.  The doctor who came in to see us mentioned that the initial radiology report suspected a possible sarcoma.  I was admitted to the oncology floor of the hospital that evening.  The next day a more in-depth radiology report confirmed the suspicion of sarcoma.  The hospital staff informed me that their facilities were not equipped to provide me with the treatment I would need and referred me to Robert Wood Johnson University Hospital in New Brunswick, New Jersey.  

Kate and my parents brought me to Robert Wood Johnson on May 4th, where I received a series of MRI scans.  The MRI reports revealed similar findings, that the mass was likely a sarcoma.  Since the mass was so large, no biopsy was going to be performed, as it would need to come out regardless of whether or not it was sarcoma.  

It seemed surreal. Time seemed to slow down all of a sudden - seconds felt like agonizingly long hours and I felt like I was in some sort of limbo.  I wanted somebody to immediately tell me exactly what was wrong and exactly how it was going to be solved.  My emotions went through a pretty wide range, but the one I most specifically remember feeling was fear.  I have never been more frightened in my entire life and all I wanted was to be with my wife and to hold her in my arms.  

I remember immediately thinking I didn't want to die and I realized that any hardships or complaints I had about my life up to that point didn't matter any more.

I began reading about sarcoma on the internet during my initial stay in the hospital and quickly found out this was not a good idea.  I was still in the initial shock of being told I had cancer and was not mentally or emotionally ready to take in more information.  During this time, my wife and mother were both extremely helpful and did all of my information-gathering for me.  They helped come up with questions for me to ask the doctors so we could all be more well-informed of the treatment plan.   

What would you tell someone else who is newly diagnosed?

You are going to be amazed with how many people out there love you and are willing to do anything for you.  Don't hesitate to lean on people for help.  

Tell us about your treatment? 

My surgery was on May 22, 2014.  A large tumor measuring 10.6 inches X 5.3 inches X 3.1 inches was removed from my posterior left thigh.  I was actually up and moving much faster than I thought I would - I was only kept in the hospital for one night after they saw I could move relatively well around the floor and even make way up and down stairs.  The main side effect I had from the surgery was accumulation of fluid in the area where the tumor was removed.  It wasn't painful, just very uncomfortable - it felt like a very large water balloon was sloshing around in my thigh and made it feel very numb.  I had a JP Drain to initially remove the fluid but it was taken out after a week.  After that the fluid continued to build up so I had to go in to have my surgeon drain my leg once.  About three months after the surgery, the fluid was completely gone and I felt a lot better.

I started 6 1/2 weeks of radiation treatments on July 2, 2014, and finished on August 18.  I went in five days a week and the sessions lasted about a half hour.  Throughout the course of my treatments I felt increasing fatigue. Near the end of treatments, the skin in the treated area started turning darker and more red than normal. Since the treatments have concluded, the skin has become more irritated and it can quite painful at times – like a very strong sunburn.

I should also mention that since the initial finding in early May and until very recently, my sleep schedule was a wreck and I had only a handful of nights of uninterrupted sleep.

  

How did friends and family react?

Kate let both of our parents and siblings know right away.  She was also very good in notifying my close friends and our school's principal right away.  

I can honestly say that I have had the most amazingly supportive group of friends and family throughout all of this.  Whatever support I have asked for, they have given me that and so much more.  I could not ask or expect them to do better.  It feels amazing to know that I am so loved and that I have so many incredible people in my life.  

Throughout my radiation treatments, I had someone accompany me every single day. My wife, parents, brother, and in-laws all took turns going in with me and were there to greet me with a smile and a hug when I was ready to leave each day. The radiation therapists actually commented on how great it was that I had so many people to support me through this and I completely agree. It made it much easier to go to the hospital every day with someone else.

Do you ever feel alone – even though you have people around you?

Yes.  This is one of the most difficult things for me to explain.  I would say that in some way, shape, or form, this cancer is on my mind all of the time.  It feels like a burden I can't escape or relieve myself from.  That feeling of burden sometime leads to intense sadness and a sense of isolation.  I remember how it felt to know that cancer was inside my body and the fear of it ever returning and having to feel that again is something I could not expect or want others to understand.  

  

Do/did you feel like your life is on hold while you deal with sarcoma?

I try to not let it be on hold, but as I mentioned before, this is on my mind all of the time and in that sense, it has put my emotional and mental state in a deep hole that has been very hard to climb out of.  In that sense even if I am physically trying to experience as much of a "normal" life as I can, many times I am mentally / emotionally in an entirely different place.  I have tried to cope with this by seeing my therapist regularly and not hesitating to talk about my feelings with my wife, who is the best friend and best listener I could ever hope for.  

How has your day-to-day life changed since your diagnosis? What can’t you do that you could before?

I have always been a very physically active person with exercise and fitness and since my diagnosis that has somewhat slowed down.  I did buy a new bicycle, which allows me to engage in a low-impact form of exercise that I could handle.  

What is your prognosis?

I handled the surgery very well and the pathology report revealed a myxoid liposarcoma with no definite round cell component. I was referred to Memorial Sloan Kettering Cancer Center in New York for a second opinion on whether or not chemotherapy would be needed following radiation. On August 5, I went there and met with a sarcoma specialist. I was extremely relieved to hear that chemotherapy would not be needed and I was even more relieved when I was told that my outlook for the future is very good.

There is a very low chance of the cancer spreading and with the radiation treatments the chance of recurrence is also very low.

What keeps you inspired / motivated?

Kate.  She is the love of my life and my best friend.  I aspire to be cancer-free and live a long, fulfilling life together with her.  That motivates me to do whatever is needed to win this fight.

And, finally, a bonus question – what is your hidden talent?

I would like to think it is one I am not even aware of yet.  I try to make myself open to new experiences and am constantly developing new interests and skills.  Over the past few years alone, I have developed a love for studying local history, practicing yoga, and gardening - things that I could never have seen myself enjoying when I was younger.    

As with all of our personal stories, please keep in mind that nothing here is meant to be medical advice. Thank you, Rob, for sharing your story.

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.

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