Jack Aiello's Myeloma Journey
An interview with Jack Aiello, multiple myeloma patient and San Francisco / Greater Bay Area Multiple Myeloma Support Group facilitator
How did your journey with myeloma begin?
It began with an excruciating backache, for which I was prescribed bed rest. The back pain stopped but a blood test revealed an elevated protein level. In early 1995, I was diagnosed with myeloma. There were few treatment options. I had two autologous transplants but they didn’t work well for me.
A year and a half later, I entered the first clinical trial of thalidomide in myeloma. There hadn’t been any new drug development in myeloma for 20 years. Thalidomide didn’t work well for me either, but taking part in that clinical trial taught me a lot about the value of myeloma research and the need for more of it.
Next, I had a third transplant – a full allogeneic transplant that’s hardly ever performed any longer. The “allo” made the two “auto” transplants look like a piece of cake by comparison! But I finally achieved a complete remission, and I haven’t needed any myeloma treatment since the end of 1998. However, all the side effects led to medical disability and retirement.
Why did you become an advocate?
Some people step away from the myeloma community once they or their loved ones get into remission, and that’s understandable. But I chose to stay involved and to pay it forward. I facilitate the San Francisco / Greater Bay Area Multiple Myeloma Support Group, and I talk often with newly diagnosed patients who might be feeling scared or overwhelmed. We’ve all been there, and being part of the myeloma community allows us to share with others who are on a similar journey. Together, we’re stronger.
I’m a big proponent of myeloma education, becoming your own best advocate, and then maybe even becoming an advocate for our community. Each person can find their own way of making a contribution. My special interest is myeloma research advocacy. I served on the National Cancer Institute (NCI) Myeloma Steering Committee, and currently serve on the NCI Symptom Management and Quality of Life steering committee, the Center for International Blood and Marrow Transplant Research (CIBMTR) Consumer Advocacy Committee, and as a representative of the patient community at the SWOG Cancer Research Network. I’m also For many years, you have raised funds for IMF programs and services.
What motivates you?
My big motivation has always been to support myeloma education, and it was my work in advocacy that showed me how fundraising can help raise awareness. I have funded grants for myeloma patients to travel to educational events like seminars and summits, many of which I still attend myself. It’s important for patients to learn about their disease, and to become advocates for themselves and perhaps even for others.
But raising money for something important can still be a lot of fun. It’s like matchmaking between what you want to accomplish and what you enjoy doing. For example, one of my first fundraisers was a Texas Hold’em Poker Tournament, which I continued to run for many years because I had such a blast! happy to volunteer locally and I do so nearly daily.
Then I started a letter campaign, but no one could read my handwriting, so now it’s an email campaign. One thing I learned is that some folks might not donate to your cause simply because you haven’t asked. An email is an easy way to ask your contacts for their support. Sometimes I have to send out reminders, but I’m always amazed at how many folks respond. It’s easy to do and very effective and rewarding.
So my advice to others is to take what they enjoy and think of ways to turn that into a fundraiser. I just love seeing the different events that people come up with!
How has your outlook evolved since 1995?
In 1995, my oncologist said that my anticipated survival was 2 to 3 years. When I told my kids that I needed to go to the hospital for treatment, my daughter asked me if I had cancer. To this day, it’s still hard for me to repeat that phrase because I really hate anything that impacts my kids negatively. In 2022, my wife and I celebrated our 50th wedding anniversary with all of our kids and grandkids, and we had a fabulous time. I have watched my two daughters grow up and I have walked them down the aisle. I was there to see my son conduct his first orchestra concert. I have four grandkids. I consider myself extremely fortunate and I am committed to remaining as healthy as possible for as long as possible.
Join the fight against myeloma by supporting the IMF’s research and patient education initiatives. For more information, please contact Lynn Green at 1.334.332.0888 or [email protected].
(This article was published in the 2023 Winter Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)