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.