“This cancer is very serious and difficult to treat and there isn’t a cure. Take a day out of your life and become a registered bone marrow donor. You could be the one person out there who could potentially save someone’s life, or my life one day.”
MPN Patient Ryan Tellini of Australia
Managing cancer with a proactive approach
*This story is a patient's first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult with your physician (preferably an MPN specialist) before making any therapy or lifestyle change.
Ryan Tellini of Rhodes, Australia (a suburb of Sydney) opened his mailbox one afternoon in 2015 to learn his local fire department was looking for part-time help. As someone who’s fit, Ryan was excited about the challenge of working with the department. It was no surprise he easily completed the physical training, but things weren’t going to progress as Ryan had anticipated.
There was a problem with Ryan’s bloodwork. And he was told by his physician he may have Essential Thrombocythemia (ET) and understood quickly he wouldn't pass the required medical exam to be a firefighter. At the time though he didn’t think much of what this illusive ET might be. “I thought it was something like high cholesterol, an infection or something that was easy to get rid of.” He says. However, over the next several months as his platelet counts continued to rise his hematologist ordered a bone marrow biopsy (BMB). Ryan was thirty-three years old when it was confirmed he had ET/Calr Type 1 mutations. And this is when it hit Ryan; this wasn’t something that would be easy to shake.
For the next three years, Ryan’s counts remained stable but when they began to drastically change in 2017 his hematologist ordered another BMB when it was then confirmed his condition had progressed to ET/MF. Ryan and his doctor made the decision it was time to begin Interferon treatment. And it’s been working quite well as his counts have stabilized. They’re so stable in fact, Ryan is no longer worried about needing a bone marrow transplant at this stage and is hopeful Interferon will work well for him for another decade before he has to reexamine his treatment options.
Empowered with a clinical nutritionist, Ryan is taking a proactive approach to his health and notices he has more energy since transforming his diet to mainly organic fruits, vegetables, and fish. He eats grass-fed red meat once a week, takes supplements, and still enjoys the occasional glass of wine or beer. He says he has more energy when he works out a few times a week. Quality sleep is also important to Ryan, and since his diagnosis, he’s made the decision to give up night shift work and is still able to work full-time.
Handling the stress of cancer at a young age isn’t always easy for Ryan, but he’s not letting it stop him from traveling the world. Ryan has visited twenty-one countries from the Greek Isles to Thailand with his travel partner and wife Anja of four years. He’s also perfected the art of packing refrigerated medications well for traveling. To keep his mind off his cancer he also enjoys working with cars, 3D printing, spending time with family and friends, and practicing Muay Thai kickboxing. Ryan says he’s motivated by the fighter’s mindset and practicing this martial art attributes to his positive outlook and overall health.
Ryan is one to count his blessing and says he’s thankful not only for his medical team but also MPN research doctors, cancer foundations like the MPN RF, blood and bone marrow donors, his parents, and most importantly he says, “My amazing wife who puts up with and supports me. I have to say my wife has really made my life special. I’m grateful for her being by my side. Without her, I would have just given up.” And there’s just one other thing he is quite thankful for too; Ryan and Anja will be parents to a baby boy this March. “I live to be a father figure and family man; this is my inspiration for moving forward.” He says.
He offers this advice to other MPN patients, “Try and reduce your stress. At the end of the day your life is most important so don’t overwork yourself...eat good food and exercise, but don’t overdo it. You may outlive your illness if you manage yourself right.”
Ryan would like to see the future change though and says Australia is not doing a good enough job at MPN awareness and registering bone marrow donors. “In Australia, there are only approximately 200,000 registered donors whereas Germany, for example, has two million.” He says.
While doing his best to manage his MPN Ryan still has concerns. “This cancer is very serious and difficult to treat and there isn’t a cure. Take a day out of your life and become a registered bone marrow donor. You could be the one person out there who could potentially save someone’s life, or my life one day.” He says.
Contributed by Jennifer Acker
Funding research and advancing treatment options for patients like Ryan is Why We Are Here. Our fiscal year ends on November 30th and to reach our goal we need your support now more than ever! We have big plans and exciting research projects underway but we can’t do it without you so we hope you will consider investing in the future of MPN research by clicking here and donating TODAY!
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.