Anne’s Story of Informational Hide and Seek [Interview][Transcript]

anne_glauber_pancreatic_cancer_survivorGuest: Anne Glauber
Presenter: Neal Howard
Guest Bio: Anne Glauber is a managing partner of Finn Partners and a founder of its CSR/ Social Impact practice. Her work has earned her national recognition for new communications models that mobilize private sector resources to address public problems. When she was diagnosed with stage IV pancreatic cancer she discovered information on treatments outside of the standard of care and created Let’s Win, a first-of-its-kind crowdsourcing platform that enables doctors, researchers and patients to share fast-breaking clinical information about pancreatic cancer treatments and trials.

Segment overview: Anne Glauber shares her personal story and the sobering statistics for those diagnosed with pancreatic cancer.

Transcription

Health Professional Radio – Pancreatic Cancer Survivor

Neal Howard: Hello and welcome to the program, I’m your host Neal Howard here on Health Professional Radio, thank you so much for joining us today. Our guest is Anne Glauber. Now, Anne was diagnosed with stage 4 pancreatic cancer veritable … for many people. However, Anne went on to discover some information on treatments that were kind of outside of the standard of care and she’s with us today to talk about her story, her diagnosis, and her ‘Let’s Win’ initiative, first of its kind crowd sourcing platform that has launched earlier this year that enables doctors, researchers, and patients to share some fast breaking clinical information that are potentially life-saving pancreatic cancer treatments. Welcome to the program Anne.

Anne Glauber: Thank you! Thank you so much for having me today.

N: Thank you. Pancreatic cancer, it’s one of the more deadly for lack of the better turn, one of more aggressively, deadly cancers. Am I right in that assumption? You’re a survivor. Talk about your background, maybe your diagnosis and how many people there are affected by this disease yearly?

A: Yes, you’re absolutely right by saying that pancreatic cancer is one of the most deadly cancers. It’s cancer the country that has the highest mortality rate and actually when people are diagnosed and begin to go on the internet and search for statistics about the disease, a lot of people, I was horrified and shocked and devastated, and I had to stop looking. I couldn’t believe what the statistics are. 50,000 people are diagnosed with cancer every year and 94% of them dies in this cancer in less than 5 years. There is no cure for pancreatic cancer and no early detection. It’s an extremely difficult disease and I don’t think that the general public knows how difficult and devastating it is. For me, I was living a very full life. I was working as a, my profession is public relations and I was working at a major PR firm and feeling fine and everything was great. I went to see a dermatologist who put a mirror to my eyes and saw that they were yellow and I had jaundice and then I had a sonogram and then I had a cap skin and then I got the terrifying diagnosis of stage 4 pancreatic cancer. There was a complete shock because I had no symptoms.

N: Have you had any experience with cancer in general or pancreatic cancer in the past, maybe through a friend, or a relative, or a co-worker?

A: No, not at all. It was not in my family at all and I personally knew no one who had pancreatic cancer. When I got this diagnosis with actually a surgeon who gave me this diagnosis after reading my cap skin and he basically said to me that I had about a year to live, maybe less, there were two treatments available to me. One treatment had bad side effects and the second treatment had even worse side effect. When I asked the doctor, for how long would the second treatment keep me alive and he said about two months. I heard this news and really, I did not know where to turn or what to do and it took a while for my family and I to figure out what would be our plan of action because here I was determined not to deal what that doctor suggested.

N: So, you get this diagnosis and you’re obviously terrified and you’re searching for this information all you’re finding is the negative. So, you’ve got this negative, going on but you’ve kind of change your thinking about this disease through this survival journey. Is that correct?

A: You’re absolutely correct and as I said, I was determined to not follow this doctor’s recommendation and to figure out another path for my treatment. My family and I just ended up doing a lot of research, talking to a lot of doctors in many different institutions on our search to find pancreatic cancer specialists. And I think that’s really important when people get this diagnosis and again, you’re shocked, you don’t know what to do. You may go to one doctor, your local oncologists, but I think it’s extremely important to find out who the specialists are and to make appointments to go to see the specialists and get second opinion always. So, my family and I found a leading pancreatic cancer specialist and we went to see him.

N: So, this treatment that he offered you, was it something that was extremely out of the mainstream or something simply you have to do a little bit of research in order to find people like him?

A: Yes, he was. I want to say he’s extremely out of the mainstream. His name is Dr. William Isacoff. He uses these drugs that are all FDA approved and but he mixes them up in a different kind of way. He provides a dosing called ‘Metronomic Dosing’, which is smaller doses over longer periods of time so you don’t feel the ravaging effects of the treatment. So, I went to see him, I’m a New Yorker. I went to see him, he’s in California and began my treatment with him and then he recommended an outstanding doctor, pancreatic cancer specialist here in New York, Dr. Allyson Ocean. He has continued the treatment and modified the treatment, but I’m still on that metronomic dosing, which works for me.

N: When we’re talking about such a devastating form of cancer and it moves so rapidly and with being no cure and really the treatments being bad or worse with the exception of what you’ve found in your doctor in California, less than half of the 50 plus thousand people that are diagnosed every year can even hope to take advantage of?

A: Yes, exactly right. That’s one of the reasons why we started Let’s Win. I started it with Dr. Allyson Ocean, who’s my doctor. We’re co-founders of Let’s Win, which is a platform that provides treatment information to patients and families and information about new science that could potentially be used now by patients and families and really good clear information about clinical trials. We work closely with the Lustgarten Foundation, which is the largest private funder of pancreatic cancer research in the country and we are initiative supported by them. So, their involvement as well brings in the top scientists across the country to participate in Let’s Win and provide information to patients and their families.

N: Now, where can our listeners go and get more information about Let’s Win crowdsourcing?

A: They can go to www.letswinpc.org.

N: Thank you so much for joining us today Anne.

A: Thank you.

N: You’ve been listening to Health Professional Radio, I’m your host Neal Howard, with Anne Glauber. Anne is a pancreatic cancer survivor, who went kind of outside the box to save her life and she’s been with us today talking about her Let’s Win initiative as well as giving us an insight into her story, her diagnosis, and her change of mind and heart when it comes to pancreatic cancer. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm, and you can subscribe to this podcast on iTunes.