The Eye Believe Podcast

E45: Radical Acceptance in an OM Diagnosis with Allie, age 26

A Cure in Sight is joined by Allie, diagnosed June 1, 2022 at the age of 26 with a small choroidal melanoma. Tune in to hear her story and some of her coping skills she has leaned into as a psychologist by profession. 

I don’t really know how to say this, but I was diagnosed with an incredibly rare eye cancer, choroidal melanoma, last week. Thankfully, we caught it early. There’s a lot of uncertainty and of course shock, grief, sadness, etc. Just last month, I graduated and made a post where I said, “For me, radically accepting pain is what allows me to enjoy my life in spite of the challenging experiences I’ve had and will continue to have.” Little did I know that just three weeks later, I would receive a devastating, confusing, and surreal diagnosis. As per usual, I am leaning into my dialectics (my favorite) and am finding pockets of joy and appreciating the little and big things in my life. I’m letting the tears flow and using all the dark humor and sarcasm to get me through this nightmare. I’m still trying to process it all and make sense of something that truly can never make sense. Thank you to everyone in my life who has been so incredibly supportive this last week. I feel so grateful for all of the love.

 

 

Headed into surgery for plaque radiation to hopefully start radiating and killing this stupid tumor! I feel so lucky that I had eye pain, which isn’t typically a symptom of this cancer and may have been due to my dry eye, which brought me to the doctor in the first place. From my doctor, I was referred to a retina specialist whose colleague was convinced I didn’t have cancer but rather had a different diagnosis. I remember the colleague putting his hand on my shoulder and saying, “The good news is it’s not cancer.” Again, feeling so lucky that at the end of the day, the retina specialist decided not to listen to his colleague but rather referred me to a top ocular oncologist “just to be safe and rule out cancer.” Didn’t think I would be diagnosed with cancer but alas, I was. And lastly, feeling grateful that I was able to get the surgery scheduled so quickly, just four weeks after my initial diagnosis.

Happiness Trap (comic or book form)

 

Connect with Allie here on social media:

Facebook URL: https://www.facebook.com/allison1215123 

 

Instagram handle: allie_dashow37

 

ANNOUNCEMENTS:

Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma 

NOVEMBER 5, 2022; 8 AM 

Register here and be sure to bring friends and family to walk with us! (Virtual option available)

Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters

 

NOVEMBER 12, 2022

REGISTER here and feel free to bring friends and family along! (virtual options available) 

 

Email contact@acureinsight.org for questions regarding any upcoming events!

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Be sure to follow us on Facebook, Twitter, Linked In, or  Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!

*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!

Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.

Contribute via  PAYPAL OR VENMO or reach out directly to contact@acureinsight.org 

The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors. 

This podcast was hosted by Danet Peterson and produced by Page Fronczek.

 

E48: Shared decision Making with Patients with Dr. Patel

A Cure in Sight is joined by Dr. Sapna Patel, MD, of MD Anderson in Texas. She joins in for a discussion on how she guides patients through the decision making process, as well as some of the key things to be aware of as a patient as you are making decisions about navigating your diagnosis. 

 

Sapna Patel, MD, is a board-certified medical oncology physician, Associate Professor, Uveal Melanoma Program Director, Fellowship Program Director, and Director of Online Medicine in the Department of Melanoma Medical Oncology at The University of Texas MD Anderson Cancer Center in Houston, Texas.

ANNOUNCEMENTS:

Steps for Sight Registration is coming! Subscribe to the newsletter to stay in the know!

Newsletter link

 

Email contact@acureinsight.org for questions regarding any upcoming events!

*********

Be sure to follow us on Facebook, Twitter, Linked In, or  Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!

*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!

Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.

Contribute via  PAYPAL OR VENMO or reach out directly to contact@acureinsight.org 

The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors. 

This podcast was hosted by Danet Peterson and produced by Page Fronczek.

Eye Believe 2022-Welcome with Dr. Reichstein

Welcome to Eye Believe 2022! Welcome message from Dr. David Reichstein. 

Eye Believe 2022: D2T1 Ocular Melanoma Met’s Explained

Join Dr. Justin Moser and Dr. Meredith McKean, together with Dr. Sanger to discuss navigating an ocular melanoma mets diagnosis.

Dr. Moser is a Medical Oncologist who specializes in phase 1 clinical trials, drug development, and cutaneous malignancies. He leads the Melanoma program at HonorHealth Research Institute, and runs one of the only programs dedicated to uveal melanoma in Arizona.

 

Dr. Meredith McKean received her bachelor's degree from Iowa State University, where the promising athlete ran cross-country and track. McKean completed her fellowship in Hematology-Oncology at the University of Texas MD Anderson Cancer Center.   She now serves as the associate director for the Melanoma and Skin Cancer Research Program at the Sarah Cannon Research Institute of Tennessee Oncology. 

Maureen Sanger, PhD is a psychologist with Tennessee Oncology providing counseling to cancer patients and survivors. She received her doctorate in clinical psychology from Vanderbilt University and trained at MD Anderson Cancer Center. Prior to joining Tennessee Oncology she was an Assistant Professor of Pediatrics at Vanderbilt University Medical Center where she worked with the cancer and sickle cell disease programs.

Eye Believe 2022: D2T1 ”KIMMTRAK approved; NOW WHAT?”

Join Dr. Justin Moser and Dr. Meredith McKean to learn more about the approval of KIMMTRAK and what this means for you as a patient, whether you are HLA-0201 positive and qualify for this treatment drug, or if you do not and wonder what is out there treatment wise for you.

Dr. Moser is a Medical Oncologist who specializes in phase 1 clinical trials, drug development, and cutaneous malignancies. He leads the Melanoma program at HonorHealth Research Institute, and runs one of the only programs dedicated to uveal melanoma in Arizona.

 

Dr. Meredith McKean received her bachelor's degree from Iowa State University, where the promising athlete ran cross-country and track. McKean completed her fellowship in Hematology-Oncology at the University of Texas MD Anderson Cancer Center.   She now serves as the associate director for the Melanoma and Skin Cancer Research Program at the Sarah Cannon Research Institute of Tennessee Oncology. 

Eye Believe 2022: D2T1 ”Standards of Care for Uveal Melanoma”

In this session, Dr. Reichstein, Dr. Schefler, Dr. Hovland, and Dr. Walter will be discussing "Standards of Care for Uveal Melanoma, are there any?"

Topics addressed include:
- NCCN/TNM Staging & guidelines

-Types of Plaque/Proton Beam Treatment

-Transpupillary Thermotherapy (TTT) alone (and why we shouldn't do it)

 

Dr. David Reichstein, an ocular oncologist, who studied at the renowned Wills Eye Hospital here from Tennessee Retina.

Dr. Amy Schefler, ocular oncologist and renowned eye cancer researcher from Houston Retina, joining us virtually.

Dr. Peter Hovland, who specializes in vitreoretinal disease & surgery, and ophthalmology, here from Colorado Retina.

Dr. Scott Walter, a practicing ophthalmologist in Hartford, Connecticut and is affiliated with Hartford Hospital. 

 

 

Eye Believe 2022: D2T1 ”Your Eye After Treatment”

Join Dr. David Reichstein of Tennessee Retina to discuss what to expect in your eye after treatment.

Dr. Reichstein is a graduate of the world's premier Ocular Oncology Fellowship at Wills Eye Hospital, under the direction of Drs. Jerry and Carol Shields. Dr. Reichstein's interests include the diagnosis and management of patients with all types of ophthalmic tumors, including uveal melanoma or nevus, retinoblastoma, vitreoretinal and choroidal lymphoma, vascular tumors of the posterior segment, and choroidal metastases. He also has expertise in the management of anterior segment tumors including conjunctival melanoma, conjunctival or corneal intraepithelial neoplasia, and squamous cell carcinomas of the anterior segment. Dr. Reichstein's therapeutic expertise includes the use of topical and systemic chemotherapy, surgical management of ophthalmic tumors, and radiation using brachytherapy or external beam radiation.

Eye Believe 2022: Patient Mini Interview Panel

Join 5 patients as they discuss their ocular melanoma diagnosis, and some of the struggles, and the strange but welcome gifts that have come despite their diagnosis.

Patients participating:

Mike Stansbury - diagnosed Dec 2018, metastatic June 2021

Julie Le Blanc - Diagnosed Sept 2018, metastatic in March 2022

Laura Cunningham - Diagnosed June 2013, metastatic in Dec 2013

Steve Durrant - Diagnosed Spring 2017, NED

Danet Peterson (your host) July 2020, metastatic in Nov 2022

 

Tune in for an amazing insightful interview.

 

Eye Believe 2022: D2T2 ”Navigating Insurance” with Triage Cancer

In this session from our second track, Joanna from Triage Cancer discusses navigating insurance. Thank you Triage Cancer for your invaluable information.

Joanna is a cancer rights attorney, speaker, and author, dedicated to improving access to and availability of quality information on cancer survivorship issues. Monica is the co-founder and Chief Executive Officer for Triage Cancer, a national, nonprofit organization that provides education on the practical and legal issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. Throughout her career, Monica has provided hundreds of educational seminars, written articles, blogs, and co-authored a book published by the American Bar Association called Cancer Rights Law: An Interdisciplinary Approach.

For further resources on navigating insurance, see the following past presentations:

Understanding Health Insurance (October 2022)

 

Medicare: An In-Depth Look (September 2022) (CC)

 

Decisions About Work: Accommodations, Leave, Disability, & Retirement  (July 2022)

Eye Believe 2022: D2T2 ”Low Vision Resources”

Welcome to your Track 2 session for 9am! In this session you will hear from Dr. John Pino in a talk about low vision. 

Dr. John Pino has been providing primary eye care for 36 years. As clinical director of one of the largest Optometric practices in Tennessee, Dr. Pino focuses on providing the latest technology to his patients. He is a member of both the American Optometric Association and the Tennessee Optometric Association. Dr. Pino is also a fellow of the International Academy of Low Vision Specialists, an elite group of only 39 professionals worldwide. He is passionate about helping people regain their ability to perform certain visual tasks like driving, reading, or watching television.

Dr. Pino also holds a Ph.D. in the field of nutrition. He places great emphasis on the importance of nutrition with his patients. As a cancer survivor, he is passionate about empowering people to live healthier and happier lives. He is also a Professional Health Coach, and he enjoys lecturing and doing research in the field of nutrition.

Dr. Pino and his wife, Ree, and his dog, Happy, reside in Lebanon,Tennessee, where he practices.