David Fajgenbaum's life went into overtime the moment a priest read his last rites in November 2010.
At least that's how the Penn Medicine immunologist views his last nine years.
That belief has reshaped the way Fajgenbaum confronts idiopathic multicentric Castleman disease, a rare immune system disorder that has dealt him five life-threatening blows. It's also changed the way he goes about his life.
"When you're in overtime, every second counts. You don't know how much time you have," said Fajgenbaum, a former quarterback at Georgetown University. "It really helps you focus in on what's important and what's not important."
For a while, Fajgenbaum said he "just hoped and prayed" that someone, somewhere, would find a cure and better treatment options for Castleman disease, which kills about 35% of its victims within five years of diagnosis. Then, he realized he might be that person.
That life lesson is among several that Fajgenbaum, 34, recounts in his new memoir, "Chasing My Cure: A Doctor's Race To Turn Hope Into Action." Fajgenbuam wrote the book partly in hopes of boosting awareness of Castleman disease, which has not gained the notoriety of other rare diseases despite its deadly nature.
"We shouldn't either hopeortake action we should hopeandtake action," Fajgenbaum said. "I'm here on the phone because of that turning point."
Idiopathic multicentric Castleman disease the most severe form of the disorder activates the bodys immune system, releasing an abundance of inflammatory proteins that can shut down the liver, kidneys and bone marrow. Relatively little is known about it.
Fajgenbaum, an assistant professor in Penn Medicine's Translational Medicine and Human Genetics division, has spearheaded efforts to identify more effective treatment options for people with Castleman disease. After all, he recognizes his clock may stop ticking at any moment.
Chemotherapy can keep the disease at bay for a while, but it's not a permanent solution, Fajgenbaum said. Patients tend to relapse after treatment, creating a vicious cycle that he knows all too well.
Thus far, the U.S. Food and Drug Administration only has approved one treatment siltuximab for Castleman disease. But it only works in about one-third of patients and Fajgenbaum is not one of them.
Fagjenbaum's research and his personal experience eventually led him to sirolimus, an immunosuppressant typically prescribed for kidney transplant patients. Because the drug inhibits activated T-cells, he suspected it might put his disease in remission.
"I knew if I did not start myself on a drug, there was no way I was going to make it," Fajgenbaum said.
Under the supervision of his doctor, Fajgenbaum began taking sirolimus after his last life-threatening hospitalization six years ago. At the time, Fajgenbaum was simply hoping he'd live long enough to marry his girlfriend, Caitlin something he said he once took for granted.
"The pre-overtime mentality is that we have all the time in the world, that if it's meant to be, it's meant to be," Fajgenbaum said. "But the overtime reality is that none of us have all the time in the world. If it's meaningful and important, then that's exactly what you should do."
Since Fajgenbaum began taking sirolimus, his symptoms have not flared up.
Now, he and Caitlin have a daughter, Amelia. And Fajgenbaum is leading clinical trials examining sirolimus' effectiveness against Castleman disease. Like siltuximab, the drug appears it may help some but not all people battling Castleman disease.
That has Fajgenbaum wondering how many other existing drugs have been overlooked as potential treatments for other diseases. It's another lesson that he expands upon in his book.
"Sometimes, solutions can be hiding in plain site," Fajgenbaum said. "This drug I'm on is in my neighborhood CVS all these years and no one had thought to try it. How many other things are like that ... in science or medicine?"
Since writing the book, Fajgenbaum said he has heard from all kinds of people who have faced challenging health diagnoses, whether it's cancer or some other rare disease.
It's definitely moving the needle, Fajgenbaum said. In September, the month the book was published, more people Googled Castleman disease than ever before. And more people have donated funds to the Castleman Disease Collaborative Network, an organization he co-founded to expedite research efforts.
"It's really been, in many ways, therapeutic to be able to share my story, the ups and the downs," Fajgenbaum said. "Even writing it was therapeutic. To bring back some tough memories, to expose them and to face them."
Sometimes, Fajgenbaum said, it's best to face the tough times with a sense of humor. That's a lesson he gained from his late mother, who died of cancer when he was at Georgetown.
Fajgenbaum recalled flying to Raleigh, North Carolina to see his mother after she had a brain tumor removed. He tentatively walked into her room alongside his family, unsure what to expect. He found his mom sitting, her head shaved and partly covered by a gauze wrap.
She pointed to her head and joked that she looked like the Chiquita banana lady.
"It was exactly what we needed," Fajgenbaum said. "It wasn't what my mom needed. She was going through a really tough time. It wasn't going to make her feel better. But she knew that it was going to make us feel better. By making that joke, it kind of relieved everything. It was like, you're still my mom, you're still you."
A few years later, Fajgenbaum found himself walking around the hospital with his father on New Year's Eve. This time, Fajgenbaum was the patient. His stomach was filled with 30 pounds of fluid, the result of his ill-functioning kidneys and liver.
As they passed the family waiting area, they stopped to help a man who was laying on the floor, noticeably drunk. The man thanked Fajgenbaum's father, wishing him and his "pregnant wife" the best of luck.
"We just burst into laughter," Fajgenbaum said. "I turned to my dad and said, 'Man, you've got an ugly wife.'
"If I hadn't had my mom's example ... maybe I would have just burst into tears and gone back to my room. Rather, that's hilarious. This drunk guy thinks I'm a pregnant woman because of the size of my belly."
That moment, nearly nine years ago, came just several weeks into Fajgenbaum's "overtime" session. He's overcome a lot since and learned a great deal. But he knows there's more work to be done for him and for others.
Follow John & PhillyVoice on Twitter: @WriterJohnKopp | @thePhillyVoiceLike us on Facebook: PhillyVoiceAdd John's RSS feed to your feed readerHave a news tip? Let us know.
See original here:
His life in 'overtime,' Penn doctor races to find better treatments for rare Castleman disease - PhillyVoice.com
- Technion team discovers important adaptive strategy of the microbiome, impacting immune system - The Jerusalem Post - April 16th, 2024
- Targeting aging and age-related diseases with vaccines - Nature.com - April 16th, 2024
- Single cell analysis unveils B cell-dominated immune subtypes in HNSCC for enhanced prognostic and therapeutic ... - Nature.com - April 16th, 2024
- After the Smoke Clears: Scars on the Immune System - The Scientist - April 16th, 2024
- Exercise and the Immune System: What's the Latest Research? - Technology Networks - April 16th, 2024
- Analysis of immune cell infiltration characteristics in severe acute pancreatitis through integrated bioinformatics ... - Nature.com - April 16th, 2024
- Vaccination impairs de novo immune response to omicron breakthrough infection, a precondition for the original ... - Nature.com - April 16th, 2024
- Harnessing the power of the body's own cells to defeat cancer - Press Publications Inc. - April 16th, 2024
- Best Life: Immunotherapy targets brain cancer - Action News 5 - April 16th, 2024
- Dietary factors and their influence on immunotherapy strategies in oncology: a comprehensive review | Cell Death ... - Nature.com - April 16th, 2024
- New insights on B cells: Researchers explore building better antibodies and curbing autoimmune diseases - Medical Xpress - April 16th, 2024
- Immune cells' intense reaction to the coronavirus may lead to pneumonia - Science News Magazine - April 16th, 2024
- The telltale traces long Covid leaves in the blood - healthcare-in-europe.com - April 16th, 2024
- Overview of the Immune System - The Merck Manuals - March 18th, 2024
- SUNDAY Unraveling The Gut-Brain Connection: How Infant Gut Bacteria Shape Immune Resilience | TheHealthSit - TheHealthSite - March 18th, 2024
- Making drugs from T cells: The quantitative pharmacology of engineered T cell therapeutics | npj Systems Biology and ... - Nature.com - March 18th, 2024
- Study unlocks the mystery of neonatal neutropenia in newborns - News-Medical.Net - March 18th, 2024
- Vertebral Subluxation and Systems Biology: An Integrative Review Exploring the Salutogenic Influence of Chiropractic ... - Cureus - March 18th, 2024
- A new strategy to attack aggressive brain cancer shrank tumors in two early tests - ABC News - March 18th, 2024
- Turning on the Bat Signal - The Scientist - March 18th, 2024
- Power Foods That Can Support Your Immune System - Videos from The Weather Channel - The Weather Channel - March 18th, 2024
- Report: Aggressive brain tumors respond to new, immune-focused therapy - UPI News - March 18th, 2024
- Designer immune-cell therapy could shrink deadly brain tumors, early trials show - Livescience.com - March 18th, 2024
- 20.2: Introduction to the Immune System - Biology LibreTexts - February 27th, 2024
- Can one shot of yoghurt really boost your immunity and gut health? - Daily Mail - February 27th, 2024
- New cancer therapy approved by FDA supercharges bodys immune system - The Washington Post - February 27th, 2024
- How bubonic plague rewired the human immune system - BBC.com - February 27th, 2024
- Innovative therapy targets and destroys leukemia stem cells - News-Medical.Net - February 27th, 2024
- Participate in Our Study for $100; Open Slots This Week - University of Arkansas Newswire - February 27th, 2024
- Sexual dimorphism during integrative endocrine and immune responses to ionizing radiation in mice | Scientific Reports - Nature.com - February 27th, 2024
- Comprehensive pan-cancer analysis identifies the RNA-binding protein LRPPRC as a novel prognostic and immune ... - ScienceDirect.com - February 27th, 2024
- YOUR HEALTH: The HAMR fights cancer - WAFB - February 27th, 2024
- Cycles of a diet that mimics fasting can reduce signs of immune system aging, as well as insulin resistance and liver fat - News-Medical.Net - February 27th, 2024
- How the powerhouse of the cell could be cancers Achilles heel - Freethink - February 27th, 2024
- Food is medicine: The science behind zinc and other supplements for immune health - Healio - February 27th, 2024
- Unleashing Our Immune Response to Quash Cancer - Medscape - February 27th, 2024
- Tumor histoculture captures the dynamic interactions between tumor and immune components in response to anti-PD1 ... - Nature.com - February 27th, 2024
- Converging and evolving immuno-genomic routes toward immune escape in breast cancer - Nature.com - February 27th, 2024
- Sanjula Jain Urges a Comprehensive Approach in Address Alarming Rise in Cancer Cases Among Younger Populations - Managed Healthcare Executive - February 27th, 2024
- Cystic fibrosis breakthrough points to zinc as infection buster - New Atlas - February 27th, 2024
- Exploring synergies between B- and T-cell vaccine approaches to optimize immune responses against HIVworkshop ... - Nature.com - February 27th, 2024
- Is the 100-year old TB vaccine a new weapon against Alzheimers? - The Guardian - February 27th, 2024
- Immune system in the blood of Alzheimer's patients found to be epigenetically altered - News-Medical.Net - February 10th, 2024
- What impact does exercise have on your immune system? And how to stay well while cycling - BikeRadar - February 10th, 2024
- Had COVID recently? Here's what to know about how long immunity lasts, long COVID, and more - AAMC - February 10th, 2024
- Noor Momin harnesses the immune system to treat heart disease | Penn Today - Penn Today - February 10th, 2024
- Research reveals a process tumors use to induce immune suppressor cells and evade immunotherapy - Medical Xpress - February 10th, 2024
- Immune targeting of HIV-1 reservoir cells: a path to elimination strategies and cure - Nature.com - February 10th, 2024
- Preventing severe allergic reactions with nanoparticles - National Institutes of Health (NIH) (.gov) - February 10th, 2024
- Sugary handshakes are how cells talk to each other understanding these name tags can clarify how the immune ... - The Conversation Indonesia - February 10th, 2024
- Scientists have identified an immune cell that can cause allergies - EL PAS USA - February 10th, 2024
- Sickle cell and the importance of the immune system - Punch Newspapers - February 10th, 2024
- Which cancers can be treated with immune checkpoint inhibitors? - MD Anderson Cancer Center - February 10th, 2024
- How does waste leave the brain? Washington University School of Medicine in St. Louis - Washington University School of Medicine in St. Louis - February 10th, 2024
- Healthy Kids: Give your immune system a boost to stay healthy this winter - nbc16.com - February 10th, 2024
- The impact of prior exposure to hypoglycaemia on the inflammatory response to a subsequent hypoglycaemic episode ... - Cardiovascular Diabetology - February 10th, 2024
- Impact of Chronic Stress on Immune System and Depression | Health News - Medriva - February 10th, 2024
- I tried 'swamp soup,' the viral recipe that promises to boost your immune system - Yahoo News - February 10th, 2024
- Understanding Immune Checkpoint Inhibition Therapy: Challenges and Strategies - Medriva - February 10th, 2024
- One Simple Change May Dramatically Boost The Effect of COVID-19 Vaccines - ScienceAlert - February 10th, 2024
- The gut virome is associated with stress-induced changes in behaviour and immune responses in mice - Nature.com - February 10th, 2024
- Cancer vaccines are in the works to fight BRCA-linked gene mutations - The Philadelphia Inquirer - February 10th, 2024
- What are the organs of the immune system? - InformedHealth.org - NCBI ... - January 17th, 2024
- Novel insights into the immune response to bacterial T cell superantigens - Nature.com - January 17th, 2024
- FDA signs off on Takeda's HyQvia as maintenance therapy for CIDP - FiercePharma - January 17th, 2024
- CBDs Pobezinsky and Pobezinskaya Use Flow Cytometry to Determine How Tumor Cells Outwit the Bodys Immune ... - UMass News and Media Relations - January 17th, 2024
- Boosting. What To Do. - Science Based Medicine - January 17th, 2024
- Axelia Oncology takes its TLR2/6 agonist into the clinic to harness the innate immune system - BioWorld Online - January 17th, 2024
- Long COVID manifests with T cell dysregulation, inflammation and an uncoordinated adaptive immune response to ... - Nature.com - January 17th, 2024
- Opinion | Thanks to mRNA, Future Drugs Will Be Easier and Faster to Make - Mississippi Free Press - January 17th, 2024
- Elon research team models the COVID immune response, one equation at a time - Today at Elon - January 17th, 2024
- Are plant-based meals good for your immune system? 4 things to know about improving your health this week. - Yahoo Life - January 17th, 2024
- Scientists Find Key To Potential Breast Cancer Prevention, Treatment | Newsroom - UNC Health and UNC School of Medicine - January 17th, 2024
- What if every germ hit you at the exact same time? An immunologist explains - The Conversation - January 17th, 2024
- Why Don't We Have a Staph Vaccine? - Healthnews.com - January 17th, 2024
- Best ways to improve your immune system - The Business Standard - January 17th, 2024
- Stanford University researchers think future pandemics could be prevented with universal vaccines - KGO-TV - January 17th, 2024
- Why you may feel depressed and anxious when you're ill and how to cope with it - The Conversation - January 17th, 2024
- New mechanism with potential to boost checkpoint-blocking cancer immunotherapies identified - Medical Xpress - January 17th, 2024
- Battling Bugs and Blues: The Interplay of Infection and Emotion - News-Medical.Net - January 17th, 2024