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Waldenstrom Macroglobulinemia Patient Story: 17-Year Survivor

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Published on November 23, 2020

Peter DeNardis’ Story

When Peter DeNardis was diagnosed with Waldenstrom macroglobulinemia 17 years ago, he had no idea what his next steps would be. Follow along to hear the story of his diagnosis, treatment journey and where he is now, including all of the “peaks and valleys” that come along with navigating cancer. He also shares personal advice for those who are newly diagnosed with Waldenstrom macroglobulinemia. 

Navigating Life with Waldenstrom Macroglobulinemia

I remember first hearing the name of the disease when I received my diagnosis 17 years ago. It sounded strange and alien. Honestly, it could have been the name of anything. But, as I learned then, it wasn’t just anything. Waldenstrom macroglobulinemia (WM) is a rare form of cancer, one that unfortunately doesn’t have a cure.

At the time, I was 43 years old. I was married. My children were still in school, still dependent on me. Naturally, the questions began to swirl in my mind: How will my family be without me? How will this affect them emotionally? Financially? The thought of not being able to see them grow up was arresting.Peter DeNardis Family

Following my diagnosis, the first several days were something of a shock to the system. It was jarring and difficult, but after several fretful nights spent worrying, my wife and I decided the only real option we had was to face this challenge — albeit into unprecedented territory for us — head on.

My Treatment Experience

My treatment experience has been something of a rollercoaster with peaks and valleys, but I’m grateful for it. My initial treatment with cyclophosphamide (Cytoxan), fludarabine and rituximab (Rituxan) afforded me six years in remission. But then, after feeling out of sorts during a family vacation overseas, I decided to consult my doctor.

I had developed hypogammaglobulinemia and cold agglutinin disease and tumors at the base of my spine, which caused me severe pain. My doctor consulted an expert at the Mayo Clinic, and I went on a course of cyclophosphamide and radiation therapy.  This held off the disease until 2017 when my doctor found WM cells again. But after surgery and radiation, I’m taking low-dose ibrutinib (Imbruvica) today, with minimal side effects.

My wife and I tackled WM head-on by seeking and heeding the treatment advice of our doctors, with good outcomes each time. Throughout that time, I also sought out others with the disease and came upon the International Waldenstrom’s Macroglobulinemia Foundation (IWMF), the Leukemia & Lymphoma Society (LLS) and Patient Power. Since the IWMF deals specifically with WM, I found a much-needed sounding board of fellow “rare birds” and their caregivers around the world. Even today, the IWMF continues to be a welcome primary source of information, support, guidance, inspiration and research for my disease. So much so that I’ve been volunteering for them in various roles for several years — my way of “paying it back for those among them who helped me on my journey” — including my recent election as Chair of the Board of Trustees for the organization.

And while everything seemed bleak when I first received that diagnosis — I was given an estimated six years of time left — 17 years later I’m still very much alive. In that time, I was able to walk my daughter down the aisle, see my eldest son get married and send my youngest son off to college. I’m thankful and consider myself lucky.Peter DeNardis Family

I also feel that I’ve become a better person after having such a difficult situation thrust upon me. After spending countless hours researching and understanding WM and undergoing treatment myself, I’ve been able to develop a healthy skepticism for all of the information floating around about the disease. I can spot what’s fake, or something trying to take advantage of patients, from a mile away. Even more, it has encouraged a shift in my perspective, where I’m able to simply take each day as it comes. Going for a walk is a special moment for me now, or time with my wife and kids, or even getting to watch a TV show by myself. I’ve learned I don’t have time to let the insignificant stuff bother me.

Advice for Newly Diagnosed Waldenstrom Patients

If you’ve just been diagnosed, I can tell you with confidence that there are more treatment options available today than when I first learned I had the disease in 2003. And I believe the current medications in trials today will have an incredible impact on WM treatment in the future — they work much faster and cause fewer negative side effects. I also believe that in 10 or 15 years, WM will be a chronic manageable disease. Hope is within our grasp.

Cancer Exercise GroupI would also tell new patients that, while it can be hard at first, a positive mindset really does improve your quality of life; wallowing in self-pity will only set you further back. Take advantage of support groups, both in-person and online, for your disease — you’ll find that making connections with others facing a similar journey is quite therapeutic and can lift the spirits. Case in point, during my most serious relapse, my IWMF contacts and friends from around the world all sent well wishes and prayers on my behalf, which I truly believe that, in combination with the medical treatment protocols and the support of my wife and family, played a positive role in my recovery. Don’t ever be afraid to ask for help from your care partner, your family, your friends and your support community, and even seek psychological counseling if needed. It’s okay to play the cancer card when you really need it, and it’s vital to explore all options that will improve your quality of life.

You should also know your doctors are there to help you, and the right medical team will be an amazing resource. There will be a lot of times you don’t feel well, but if you keep them up to date on your symptoms and how you’re feeling, you’ll be surprised at the things you can work out. You don’t have to go it alone.

By Peter DeNardis

Transcript | Waldenstrom Macroglobulinemia Patient Story: 17-Year Survivor

What Has Your Experience as a Waldenstrom Macroglobulinemia Patient Been Like?

Pete DeNardis: I mean, to be honest, when you're given a six-year life sentence, I expected to not be here at this point. Now it's 17 years later and I'm still around.

I married my wife almost 40 years ago, so we're married 40 years next year. We have three children and when I was diagnosed, they were 16, 14 and 7 and that was a big shock there in that I was afraid I wouldn't get to see them grow up, I wouldn't get to see them to become adults, get married, share all the important moments in their lives. So, I'm grateful that I am able to do that and I hope to be able to be there for their grandchildren.

What Should Newly Diagnosed Waldenstrom Patients Know?

Find out as much information about the disease as you can. It is a rare disease, and hematologists and oncologists are very intelligent people, but a lot of them deal with multiple different types of lymphomas or cancers. And they see a lot of patients during the day. Ours is a very rare cancer and you can expect them to get up to speed on it, but it helps if you're an informed patient so you can ask them, "Hey, what about this treatment?” or "What about this other treatment? Which one is better for me?" And you can ask pointed questions about what to expect because the doctor may not... He may know it, but he may not verbalize it to you and then you're caught by surprise when something happens.

Having a community of people that have the same rare condition you have is vital because it helps you understand, and you can “talk the talk” let's say with each other. And I could say, "I feel miserable today, I don't feel like getting up, I'm fatigued, I don't know what to do." Someone else says, "Yeah, I've been there. I know exactly what you're talking about." It makes a difference.

I guess I have more of an appreciation for little things that people don't appreciate or don't notice. They're too busy reaching for the next run let's say on their achievements. And now I just, maybe it's a combination of the age that I'm at and having the cancer diagnosis. What's important to me is just to enjoy what comes along and my family and my friends.

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