Multiple Myeloma Patient Steps Up to Bat to Advocate for Cancer Patients
Multiple myeloma survivor seeks to empower patients by illustrating the value of human life.
Former major league baseball player Robert Tufts has worn many hats, from husband and father, to professional pitcher and college professor at Yeshiva University. But one hat he didn’t expect to wear was that of a cancer patient.
Tufts, 61, of Forest Hill, NY, was diagnosed with multiple myeloma on Saint Patrick’s Day in 2009.
“On Saint Patrick’s Day [his oncologist] basically told me the words you don’t want to hear, ‘you have cancer,’” Tufts said.
Prior to his diagnosis, Tufts started feeling weak, had colds that lasted 3 to 4 days, and even lost 25 pounds in just 6 months. However, Tufts was not a fan of going to his physician’s office, and chalked the symptoms up to major life events, such as his daughter beginning college, his new job teaching after leaving Wall Street, and interviewing for positions at boarding schools. Tufts believed his illness was a result of just far too many germs.
Tufts finally went to get checked out, and was told that he was exhibiting the health signs of someone who is 75-years-old, whereas he was only 53 at the time. Because Tufts was experiencing a cold, he was instructed to come back after it had passed so his blood levels could be re-checked.
Upon his second return, Tufts was told to see an oncologist, where they took a pelvic bone sample, which led to his diagnosis with multiple myeloma.
After digesting the news, Tufts recalled a feeling of relief to know what was wrong. Tufts was told that his cancer was high-risk, and that most likely, he was on the shorter end of the 1- to 3-year average lifespan for multiple myeloma. Right away, Tufts tried to get involved with his diagnosis and get ahead of the disease.
A PET scan showed he had 30% of cancer cells in the spine, hip, and pelvis.
The first treatment Tufts received was lenalidomide (Revlimid) with dexamethasone for approximately 5 months.
“That got me to the levels where I was okay to have the autologous stem cell transplant,” Tufts said.
Tufts experienced more adverse effects from the dexamethasone than the lenalidomide.
“[Lenalidomide] would make me tired by week 3, the dexamethasone was the deep pain and being wired,” Tufts said. “I would take 40 milligrams every Friday, little pills, and I pretty much wouldn’t sleep for 48 hours. I watched a ton of Turner classic movies in that time, and found a diner that was open at 5 in the morning, and I’d just drag myself for a walk.”
Although he did not experience any complications from the transplant, the process itself was challenging.
“It’s just not a fun process when your hair is falling out from the Cytoxan and your entire digestive system is blistered from the Melphalan; you’re running a 103- to 104-degree temperature and only taking Tylenol,” Tufts said. “You can’t sleep because you have a tube in your chest and they have to come in every 3 or 4 hours to make sure you’re okay.
“Two people died getting the procedure while I was there, who were older. One I actually knew from my Wall Street days, which was interesting.”
Post-transplant it took a while for Tufts to start feeling better, but he still felt weak from the process.
He was instructed to stay away from large crowds for approximately 3 months. For the first few weeks, Tufts was told to stay inside and just walk the hallways to get some exercise.
“I got out on my birthday in 2008, November 2,” Tufts said. “By Thanksgiving, I was able to finally go and walk outside per their instructions.”
Tufts was in remission for approximately 6 years before the cancer reared its ugly head again.
“For 6 years, there was almost zero sign—–imperceptible––m-spike was basically negligible, all the proteins were in order,” Tufts said. “Three years in, my doctor was very optimistic. I responded well, particularly to the stem cell transplant, and I had been put on the maintenance dose of Revlimid for an extended period––the one that just finally got approved.
“I had no signs of cancer whatsoever, virtually, until January or so a year ago, I get a spontaneous subdural hematoma. I didn’t get hit in the head, bleeding happened somehow, it wasn’t medicine related. Due to the bleeding risk—–since you have to take baby aspirin due to the blood clot problems––I couldn’t take the med anymore so I was off it for 5 or 6 months. In that period of time, my cancer got a little bit of a running start.”
Tufts was placed on a second medication that was a pill-based version, but it did not work. Fortunately, his physician’s group is part of a trial for an updated version of medication CC122 coming out, which is a trial he will be starting soon.
“I just started the scavenger hunt for all these processes to get into it,” Tufts said. “Besides, I’m in the 7- to 10-year window where [you] usually survive [or] relapse, so it’s a bump in the road and I’m hoping it can be addressed by innovation.”
Tufts said he has no qualms about participating in the clinical trial and is looking forward to seeing what happens. Furthermore, he is a big believer in teaching hospitals.
“They’re the ones on the cutting edge of doing all this research,” Tufts said.
During this challenging time in Tufts’ life, he has tried to maintain a positive attitude rather than giving up.
“What’s the alternative? The alternative is to curl up in a ball and die,” Tufts said. “When I was first diagnosed, my mother-in-law was having a colon cancer operation and in a nursing home. My daughter was a freshman in college. My wife was basically dealing with all of that, plus me, and I saw the hell and stress [it caused].”
At that point, Tufts decided to focus on the road ahead, without dwelling on the circumstances of his illness. Instead, he targeted his energies on the goals he still wanted to accomplish.
“I basically said I’d love to live long enough to help my mother-in-law in her last years dealing with her health,” he said. “I want to see my daughter graduate. I want to see my daughter get married. I want to see grandkids. I want to pay back my wife for all the caregiver duties she’s had. That was what basically focused my mind to keep me going. Not the disease, it’s beside you all the time and you just kind of look at it and take a step-in front of it, not ignoring it, but just telling it that it doesn’t run your life.”
Tufts has also channeled his diagnosis into helping other patients with cancer by co-founding the online campaign My Life is Worth It.
“We advocate for patient and doctor access to choice in medications,” Tufts said. “We’re all different genomically, we respond different. We get the disease in treatment and even in relapse. We have different family situations, different needs and wants. Our doctor can understand all of those things. You have to have the doctor free to as many weapons as possible to fight the cancer, otherwise it’s just not worth it. And I’m very big in making sure we have access and choice to the right medicines at the right time.”
What fueled the creation of My Life is Worth It was Tufts’ worry over what his value is in society.
“Value to me was being there for the life cycle events for my family and focusing forward,” Tufts said. “It wasn’t just being alive and surviving, it was how can I thrive? How can I get to these points, how can I be part of them?”
His advice for patients newly diagnosed with multiple myeloma is to utilize teaching hospitals and optimize your time with your oncologist.
Tufts recommends going to teaching hospitals, and avoiding supplements and holistic treatments unless obtaining a doctor’s permission, because many antioxidants affect the efficacy of chemotherapy.
“Show up at all your meetings with questions, don’t just show up and waste the doctor’s time. In our health care system today, they don’t have time at all. Have 5 questions you want answered—–sometimes even if they deal with email, sometimes their system does––email the questions ahead of time so you can be focused and the doctor knows what your wants and needs are at that moment. Then they can fill you in on what they have to add to the equation. Then you absorb it and you come back for your next visit.”
Additionally, Tufts stresses the importance of following the physician’s directions. If you’re instructed to stay inside, for example, that is exactly what should be done.
“If they tell you don’t do stuff, you don’t do it,” Tufts said. “Far too many people get diagnosed, get treatments, and rush right back to work. Because let’s be honest, costs come in many ways: direct and indirect. They’re worried about the revenue side, they want to get to work. They say, ‘oh I can’t do it, my caregiver now can’t work. You can’t work earning the full 75% how do we pay the premiums? How do we pay to get to the hospital?’ And people do that, they get pushed into it and they come out sick because they didn’t follow the doctor’s directions.”