Grant Petty is 68 years old and recently retired from the University of Wisconsin-Madison where he taught and researched atmospheric physics. He keeps busy by writing, pursuing photography, and playing the guitar. Before his multiple myeloma diagnosis he was working toward his commercial pilot license.
In September of 2017, two different tests gave him the first clues that more information was needed. His dentist found unexpected changes in the x-rays of his jaw bone and a routine urine test for his aviation physical uncovered protein in his urine. Based on web searches, Grant came to suspect multiple myeloma, but a visit to an oral surgeon and his primary care doctor offered little clarity regarding this growing concern.
By December 2017, Grant experienced sudden and debilitating pain in his upper spine. Several doctor and ER visits still could not explain his pain or bone changes. Finally, in January 2018, his wife took him back to the ER where blood tests were ordered. Due to the myeloma concern already raised by the odd symptoms three months earlier, his wife insisted it should include a calcium test. This led to finding abnormally high calcium levels, and an x-ray discovered a vertebral fracture. He was admitted to the hospital and treated for his severe pain and plasmacytoma discovered in his neck.
Grant’s experience with multiple myeloma
Grant started on lenalidomide (Revlimid), bortezomib (Velcade), and dexamethasone. Five months later, he had a stem cell transplant. He had a “very good partial response” from the transplant and continued with lenalidomide maintenance therapy, which slowly improved his numbers until there were no detectable blood markers about three years later.
His transplant gave him a 5-year remission. During this time, he continued to teach at the university and pursue his aviation interests. In spring 2023, his kappa values started to sharply increase. He joined a clinical trial of iberdomide (Zenbexus), daratumumab (Darzalex), and dexamethasone. That combination worked very well and helped him reach MRD negativity within a year.
This time his remission lasted two years before his kappa started climbing again this past spring. He is scheduled for a cilta-cel (Carvykti) CAR-T this month (August 2026). Grant has been very fortunate with his side effects and treatments. He and his wife are still able to travel and enjoy bike rides and short hikes. Grant does have some balance issues and muscle loss.
The psychological impact of a myeloma diagnosis carries just as much weight as physical limitations or side effects. Grant and his family are constantly aware of the uncertainties that come with myeloma, and they take nothing for granted. Every year feels like a gift, and he and his family treat it as such.
Grant’s Book: Multiple Myeloma, A Patient's Perspective: What to Expect, What to Do, and How to Cope
During the early months following his diagnosis, Grant felt like he had information overload. Like many new patients, he was given a lot of facts and details and it became overwhelming to process everything. He wanted to have all the information gathered into one place and read like a helpful textbook.
Grant decided to write a book! It has a couple of chapters for the newly diagnosed — “What You Need To Know Now”, followed by chapters that walk the reader through everything from first line treatments through stem cell transplant, side effects, relapse, and even social, emotional, and financial challenges.
Some chapters are designed to be very accessible and others are more technical for patients who want to know more about cytogenetics, the immune system, and so on. There are also tables of drugs at the end, giving both trade names and generic names. Of course, you can skip the chapters that don’t (yet) interest you and go straight to the parts that do. It’s a reference book, not a personal story.
Learn more about Grant Petty's book Multiple Myeloma, a Patient's Perspective: What to Expect, What to Do, and How to Cope.
Everyone’s journey with myeloma is different. Grant suggests that doing your best to keep a positive and constructive attitude toward your challenges can be extremely helpful. Also, stay close to people who understand what you’re going through, stay well informed, and try to be realistic about your circumstances.
When Grant was diagnosed in 2018, bispecifics and CAR-T were not a part of the myeloma vocabulary. Now, 8 years later, the landscape has changed drastically. There are many options and hope to be found when living with multiple myeloma.
HealthTree is here to help
Just like Grant, most patients want to stay up to date on myeloma news, have a place to land when first diagnosed, and be able to track your labs and treatments. HealthTree can do all that and more. We are here to answer your questions, guide you to clinical trials, and help build research for a cure.
