Spotlight on Bud Pickard
Bud Pickard first began feeling symptoms of systemic mastocytosis (SM) six years ago. A dairy farmer in upstate NY with seven children and a dozen grandchildren, Bud initially chalked up his aches and pains and lack of energy to a combination of age and long, arduous workdays. But as the symptoms grew worse in the fall of 2009, he went to his local doctor who recommended a full body scan.
The result came back just days before Christmas: Bone cancer. His doctor referred Bud to a local oncologist. Instead of confirming the diagnosis, the oncologist said he didn’t know what Bud had but it wasn’t bone cancer. That began a series of referrals that brought Bud to Dr. Daniel DeAngelo, an oncologist who specializes in SM at Dana-Farber Cancer Institute in Boston, and the correct diagnosis of aggressive SM.
“When I was diagnosed, they told me it was very, very rare, […] I kept saying why me. Then I said why not me, instead of somebody else. I decided early on it was important to stay positive. I was going to do what I needed to do, but I wasn’t going to live by the disease or let it stop me. ”
Dr. DeAngelo explained that there was no cure for SM and few treatment options, aside from chemotherapy and investigational medications in clinical trials, to slow or stop the progression of the disease. In cases of aggressive SM, mast cells build up in the organs, compromising organ function, but Bud’s organs were still functioning normally so they decided to hold off on treatment.
By 2013, Bud was getting worse. His spleen and liver were enlarged. He was losing weight, retaining fluids and bloated all the time. “My local doctor told me it was time for me to make plans for my demise,” Bud recalls. Instead, he discussed his options with Dr. DeAngelo and decided to participate in a clinical trial of an investigational drug.
That decision marked a turning point for Bud. Since starting on the drug, Bud’s spleen and liver have returned to normal and he’s had minimal side effects. He says his energy isn’t what it once was, but he still manages to milk the cows in the morning and mow for several hours a day. Now, 73, Bud and his wife, Cynthia, are in the process of selling the dairy farm and moving to western Massachusetts, closer to family and his Boston-based team of doctors and nurses.
Bud’s advice for other SM patients, especially those beginning this journey:
- Be optimistic – don’t let the disease define you.
- Find the right doctors – because SM is rare, many doctors have never seen a case before; keep going until you’ve got the right medical team in place.
- When it comes to considering a clinical trial, go for it.
“It’s easy to feel like there aren’t any choices with this disease, but it’s important to get the message out that there are choices,” Bud says.