Beat AML Master Clinical Trial in North Texas

LLS Investing in Cures

The Leukemia & Lymphoma Society is at the center of the Food & Drug Administration's (FDA) innovative decision to allow a nonprofit organization to lead its own clinical trial.  The target: acute myeloid leukemia (AML).  It is the deadliest form of leukemia and has not seen a new treatment option in more than 40 years.

LLS Investing in Patients

LLS is dedicating more than $125 million to the Beat AML initiative, which is focused on creating new treatment options for AML patients.  LLS is harnessing the efforts of geneticists, pharmaceutical companies, government agencies and healthcare facilities in this revolutionary approach to creating new therapies.

LLS Investing in North Texas

Dr. Robert Collins, Jr., a member of the North Texas LLS Medical Advisory Board and LLS-funded researcher, has been charged with the task of leading the ONLY Beat AML trial in the south at UT Southwestern Medical Center Harold C. Simmons Comprehensive Cancer Center.  Dr. Collins is currently accepting newly diagnosed AML patients as part of the Beat AML Master Trial.  Click here to learn more.

Hear More From Dr. Collins

Intrigued?  You can hear more about the Beat AML trial from Dr. Collins at the FREE North Texas Cancer Expo on Saturday, September 16th.  Registration for this session is limited and expected to fill quickly.

www.ntxcancerexpo.org

 Click on the image below to hear Dr. Collins talk about the Master Trial

North Texas Cancer Expo: Keynote Speaker Announced

KEYNOTE SPEAKER ANNOUNCED:
Lila Javan
Two-Time Cancer Survivor & Founder of Climb 2 Cure

The North Texas Chapter is honored to introduce Lila Javan as the keynote speaker for the 2017 North Texas Blood Cancer Conference.  Lila Javan is a two time cancer survivor and filmmaker who has photographed award-winning features, commercials, documentaries and short films. She is also the founder of Climb2Cure, a new LLS fundraising campaign.

Let's take a minute to meet Lila.

"My name is Lila Javan. In 2010, my life was turned upside down when I was diagnosed with an aggressive form of Leukemia (AML). I was told that my only chance for survival was a stem cell/bone marrow transplant. I had a bone marrow transplant that fall – my sister was my donor – and after a year in turmoil, I recovered and rebuilt my life as a cancer survivor.

In 2014, my next adventure was to be a solo trip to Africa to climb Kilimanjaro. The very week that I was booking my flights, I discovered that my cancer was back. In September of 2014, after another summer of chemo, I had a second transplant. This time it was stem cells from an unrelated donor.

While I was in the hospital, a friend took a window frame and placed a beautiful photograph of Kilimanjaro in it. He hung this on my wall opposite my bed. Throughout my treatment, I would
stare at that window and visualized myself climbing the mountain. My doctors and nurses all asked about the picture and I would tell them about my magical trip. An amazing thing happened - my solo trip became a group trip. Now, a group of 14 doctors, nurses, therapists and friends all wanted to journey with me to climb the highest peak in Africa.

I reached out to LLS to see if we could do the trek as a fundraiser for them, and "Climb2Cure" was born.  My solo climb evolved into a new Team In Training fundraising platform for LLS that will continue for years to come and expand to other mountain tops." 

 Lila's team raised an astonishing $133,000 for their climb.  She is turning her journey into a documentary film and already has her sights set on a new climb: Mount Everest.  Lila and her oncologist were interviewed after their climb for this NBC segment.

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Don’t miss this opportunity to hear Lila Javan speak by registering today for the FREE North Texas Cancer Expo that will be held on Saturday, September 16th at the Omni Hotel in Dallas. 

The Motivation Behind Team Fight Like Hell

Team Fight Like Hell organized a golf tournment to raise money
for their Light The Night Walk team in Ann Marie's honor.
They raised more than $19,000!

Ann Marie Herbst, an acute myeloid leukemia (AML) survivor and Fort Worth Light The Night Walk honored hero, recently shared her personal story at the Fort Worth Corporate Recruitment Event.  Read her script, which brought the audience to tears.

"My name is Ann Marie Herbst and I am an acute myeloid leukemia survivor.  At the time I was diagnosed I was a seemingly healthy and very happy 29-year-old.  My husband, Jay, and I had a 15-month-old baby girl and hopes of expanding our family.  Fortunately, the desire to have another child would be what would take me to the doctor for blood work, as I had no other symptoms. 

Unfortunately, instead of getting exciting news of a new baby, we were faced with the shocking and heartbreaking news of a cancer diagnosis.  I know that bad news never has good timing but receiving the call on a Friday made for a very long weekend.  On Monday I went to a clinic in Fort Worth.  I received my first ever bone marrow biopsy.  Looking back I am glad I didn’t know what was coming and I was so desperate for someone to help me that I was willing to fight through any amount of pain.  The following Tuesday I was admitted as a patient at UTSW in Dallas.  Unfortunately they do all their own testing so I had to have my second biopsy.  At the time I was so relieved to be in a doctor’s care and I had no idea I would suffer through 4 intense rounds of chemotherapy, spend 2 nights in the ICU with the fear of heart failure, get the flu with no immune system, that I would see people come into the hospital to never return home or that I wouldn’t be able to see my baby girl for 87 nights.   As every loving mother knows, putting yourself before your child goes against everything you stand for but my choice was now or forever and that answer was simple.  I had to get better so I could have her forever.  People ask me all the time what the hardest part of cancer was and I can say without a doubt that for me putting motherhood on hold was the most heart wrenching.  At the same time, I also know how incredibly blessed I was to have her to go home to.  

Prior to starting treatment, I spent 5 days in the hospital waiting on bone marrow results.  At the time I felt like I was sitting around waiting to die.  What I know now is that I am incredibly blessed that my case was an urgency but not an emergency and that I had that time to wait on the results because the doctors were able to diagnosis my specific genetic mutation and treat me accordingly.  As strange as it sounds, my doctor was happy with my mutation because the research for my diagnosis have come so far and the results of the specific treatment I received are extremely promising, which was surprising for an AML diagnosis.  In the past, an AML diagnosis yielded grim results and protocols remained practically the same for nearly 40 years. Thanks to the more than $8 million that LLS has invested in AML research in the past few years, some of which went to researchers at UT Southwestern, that is rapidly changing and my story had a happy ending. We are on a path toward cures, and I stand before you today because my dream is to live in a world without cancer and in the meantime, for every cancer patient to have the same chance at fighting as I did and we simply can’t get there without funding and research. Thank you for your time and for allowing me to share my story. I feel incredibly blessed to be able to take such a painful experience and turn it into something so positive."  

Survivors like Ann Marie are what motivate the thousands of LLS supporters and volunteers in North Texas to keep fighting and fundraising to fund much needed cures.  Motivated by Ann Marie's story?  Walk alongside Ann Marie and her team, Fight Like Hell, at the Fort Worth Light The Night Walk on Sunday, October 30th. 

A Family of Heroes

“You wouldn’t even know Cutler ever had cancer unless he pulled up his shirt to show off his second belly button,” said Cutler Fricke’s father, Aaron.

Cutler, The Leukemia & Lymphoma Society, North Texas Chapter’s 2014 Links Fore Leukemia Golf Tournament honored hero, was diagnosed with acute myeloid leukemia (AML) on September 11, 2009, just a few days shy of being six months old.

“It was like a punch to the gut, it kind of knocked all of the wind out of us,” Aaron said. “At that point we didn’t even know what leukemia really was.”

According to the National Cancer Institute, AML is only found in two of every 100,000 children less than one-year-old. In addition to the low rate of occurrence, less than 50 percent of children diagnosed with AML are cured of the disease.

Cutler was said to be in remission after the first round of chemotherapy but the doctors believed a second round of chemo would be helpful until they could find a matching donor for a blood transplant. After finding out his older brother Mason wasn’t a match, the blood bank was able to find a donor whose umbilical cord blood allowed for a successful stem-cell transplant.

Within three months of the transplant, Cutler was released from the hospital and sent home with just a G-tube—the source of his second belly button—in place until he could eat on his own again.

The transplant has since allowed for Cutler to lead the life of a normal four-year-old. He goes to school, spends time with his brother, and even plays sports like baseball and soccer.

His dad says that Cutler has even begun skating and hitting golf balls so that he can eventually play hockey and golf like his older brother, Mason.

“Golf is a big part of my life,” Aaron said. “I played in the Links Fore Leukemia Golf Tournament for the first time last year but I ultimately hope we can compete as a family team with Mason, Cutler, my dad, and myself.”

Today the Frickes spare no opportunities to help LLS. Since Cutler has been in remission, Aaron and his wife, Melanie, have been involved with LLS through Light the Night, Team in Training, and Links Fore Leukemia Golf Tournament.

Fortunately the Frickes didn’t need financial assistance from the LLS, and the support from their family and friends allowed for Aaron and Melanie to be present every day that Cutler was in the hospital.

“We walked past rooms in the hospital where we would see kids all alone because their parents had to work,” Aaron said.

“It really enlightened us to the reality of the situation and helped us to see where the money and services provided by LLS is going to its best use.”

Aaron says that the compassion his family received, and the ever present need for awareness and donations is what inspires the Frickes to do whatever they can for LLS.

“When LLS asks us to do something we don’t even bat an eye,” Aaron said. “This all occurred for a reason, and we believe that reason is to help raise money for LLS so that they can find a cure and raise awareness. We just want to give back what was given to us.”

Join Culter at the 2014 Links Fore Leukemia Golf Tournament presented by Venari Resources on Monday, May 12th by reserving your foursome now.  Register here.

John Jacob Hough, a University of North Texas student, provided this post.