University Times

This month, Peter L. DeNardis, senior management information analyst in the Department of Planning and Analysis and a part-time instructor in the Department of Computer Science, won a 2011 western Pennsylvania Jefferson Award for his volunteer service to the International Waldenström’s Macroglobulinemia Foundation (IWMF).

In addition to his Pitt responsibilities, DeNardis, who earned a Pitt MBA and has completed coursework for a doctorate at the Graduate School of Public and International Affairs, volunteers up to 40 hours a month at IWMF. The foundation was established in 1994 as a support group for those diagnosed with Waldenström’s macroglobulinemia (WM), a rare — and incurable — lymphomic cancer.

About 1,500 people are diagnosed with the disease in the United States each year; worldwide, the ratio is approximately three per 1 million people.

DeNardis has served on the IWMF board since 2007, is the foundation’s webmaster and has provided guidance to WM patients as manager of the discussion list, which boasts more than 1,500 members. He also speaks at the annual IWMF educational forum, a national gathering of WM patients and families.

And DeNardis really knows of what he speaks: In 2003 at age 43, with a wife of 20 years and kids aged 16, 14 and 7, he was diagnosed with WM and told that the disease likely would kill him in a few years.

DeNardis — now 51, in remission for the past two years and determined to beat the disease — sat down recently with University Times staff writer Peter Hart to reflect on his life and WM’s impact on it, as well as to spread the word about this rare disease.

UNIVERSITY TIMES: How did you discover you had this disease?

DeNARDIS: It was through a routine blood test. At the time — it was June 2003 — I was having some symptoms, but I attributed them to over-work, just being tired. Fatigue is one of the symptoms. I also had night sweats and severe nose bleeds. Those are classic symptoms, but at first I didn’t know what it was.

I have another chronic condition — not as bad as WM — called Crohn’s disease. I found out about that in 1983. It’s not necessarily fatal, but it is a chronic illness that affects your intestines. The first couple years were rough, but ever since then I haven’t had any symptoms, which is rare.

My gastroenterologist does blood work every time I go in for a check-up. The results came back that June, and he said, “You have elevated protein levels. You need to call this doctor.” A specialist.

But I put it off. Then [my doctor] called me in September and asked, “Did you go yet? You really have to go.” He normally doesn’t call me. So I called the number and the response on the other end was “Division of Hematology.” I said: Wait a minute: Hematology? That sounds like cancer. So I went in and was diagnosed [with WM] in October.

At the time of the diagnosis, I was shocked, especially because it was incurable and also because normally it’s people in their 60s who get it, not somebody in their 40s. At the time, the prognosis was seven years to live.

There are a lot of other factors associated with WM. It does affect your immune system. It’s a blood cancer. Your B-cells (white  blood lymphocytes) are producing proteins at levels that are out of control. It’s the chemotherapy that brings that back under control. But that affects all your B-cells; unfortunately, even the good ones go away. I was fortunate that I got treated right away in 2004.

Did you have to alter your lifestyle as a result of the diagnosis?

No, I was able to maintain a regular working schedule and have regularly scheduled chemotherapy sessions. But the disease depressed my immune system, so I just had to be careful.

I didn’t even lose my hair. Research has advanced now in chemotherapy so there are a lot of things they can do now to keep you from losing your hair or getting sick, at least for lymphoma.

Then I had five pretty good years of remission. I’m not sure it’s called complete remission, because I still had some abnormal blood values, just not enough to make me sick.

What was your reaction when you were first diagnosed?

My wife and I went in together. And the doctor wrote on his whiteboard, trying to explain to me what my condition was.

So I said, “Well, okay, what can we do about it?”

He said, “Well, there’s chemotherapy, but the general consensus is you can expect about seven or eight years of longevity.”

My wife and I just sat there, kind of looking at each other. And he looked at us and said, “You guys don’t look upset.” I said, “Well, I’m just ready to fight it now. I have children to think about.”

Did your experience with Crohn’s disease help prepare you?

I think that experience kind of gave me a false sense of invincibility. But also it gave me determination and the knowledge that if I tried things I could beat it. Of course, at the time I didn’t know the full ramifications of WM, but in the back of my mind I was saying, “Okay, I’ve done this before, I can do it again.”

So, from that point on it’s been basically a battle. My concern, even right from the start, was not for me but it was for my wife and kids, that I might not be there for them.

Did you hold a family meeting after the diagnosis?

Yeah. We thought a lot about what we were going to say. We just told [the three children] I was sick but that I was going to get treatment and I would be okay. They took it well; they were just concerned.

You said there have been rough spots even after five years of remission. Did the disease recur?

Yes. We went on vacation to Italy. And right before I came back I started to have flu-like symptoms and coughing, and when I got back to the United States, I realized my immune system had gone out of whack. I had noticed beforehand that some of my bad blood values were trending upward. Not too significantly, but still I saw a pattern, so I knew something was coming.

So after I came back, I started to get odd symptoms and infections and severe back pain. I learned the disease was reoccurring and I had a tumor at the base of my spine, which is rare also. Only about 10 percent of WM patients get that. So, I was hitting the lottery once again. I’d be rich if it wasn’t disease-related (laughs).

Did you need an operation to remove the tumor?

No, it was a combination of chemo and radiation, although that time I did lose my hair. That was almost two years ago.

When the disease recurred, did you have to stop working?

The folks here were very flexible, and I’m really appreciative of what they did. I was able to work at home on certain occasions. Other occasions, of course, I had to use up my vacation and sick time, and I had to go on short-term disability for a time. Still, they worked very carefully with me to make sure that things worked out. Every employer should be like that.

Other than your determination, is there anything that has helped you cope with this disease?

I still go to church and we would tell people at our church to put me on their prayer lists. People in the church’s support group would say yes to that. One person even said when she went to Israel, she went so far as to go to the Wailing Wall and put a note in there for me. Covering all bases — I think that helped, I don’t know. I can’t be sure, but I can’t discount it, because medically we still can’t pinpoint what worked, other than maybe it was the combination of chemo and radiation, but still for others with WM that doesn’t work. Every experience with this disease is different.

I count myself fortunate, put it that way. Maybe it was the good intentions, the positive thought processes or whatever. But I’m back in remission and have been for two years. All the blood work is normal, although I have a lingering reminder:  peripheral neuropathy in my right foot, where basically your foot gets numb, but you also get shooting nerve pain.

Do you think of yourself as a survivor?

I think of myself as a warrior. Survivor is too passive for me. My experience, though, has led me to be a supporter of others. What that comes from is that when I was first diagnosed I contacted other people who had the disease and they helped me. So through that whole process I just felt, Jeez, those people helped me, I should be able to help other people, because there are always new people being diagnosed. Kind of a mentorship.

How do you advise other patients?

It’s usually by email or the Internet, but also by phone. Once a year we have a major gathering that rotates among different cities, and that’s all coordinated through the IWMF. The foundation was started in ’94 by a patient who happened to be a pharmacist. I guess having a medical background he was surprised at the rarity of the disease, but more surprised by the lack of information about it. He decided to do something about it. IWMF started out as a small support group, and then branched out to be an organization that reaches around the world.

When you speak at the IWMF educational forums, what is your message?

We usually have 200-300 patients attending, along with their spouse or significant other. The IWMF researchers, the doctors are there, too. At the last event they had what they call the veteran panels — it’s kind of odd now to me that after so many years I’m now a veteran. Three of us spoke about our experiences, and I presented everything I went through. I tried to present it in a positive light: Here I am and I feel fine, but I have had some rough patches. And the comments we got back, some of them said, “That was great to know that.” Others felt, “That was so depressing,” because they’re newly diagnosed and they come in hearing what sounds to them like horror stories. But to me it was like: This is fantastic; I’ve been able to beat these obstacles. So, it’s all a matter of perspective.

What advice do you give fellow WM patients?

I tell people to educate yourself about the disease and what the treatment options are. Understand your body. Understand the medical tests and results, and be a proactive patient, your own advocate in a sense. Understand that most of these oncologists or hematologists are busy treating a wide array of patients. There’s no way they know every detail about your disease. I tell people to get educated and keep the doctor and even the hospital on their toes. They’re human. They have your best interests at heart, but they’re worked to their stress limit and they make mistakes, so you have to watch out for yourself.

And I tell patients: Life goes on, no matter what your condition is. The important thing is to try to remember to enjoy things, knowing that you still have the same stresses, you still have to pay the bills, you still have to take care of the kids. But every once in a while there are still things that you should enjoy, that you shouldn’t pass up. I also tell them to take advantage of the IWMF resources.

Which are?

It is a nonprofit, almost entirely volunteer-run. What’s interesting to me about the organization is what they have achieved, which is creating this informational booklet for patients — and for doctors — about different tests, about manifestations of the disease, and making those available upon request for free.

There’s no underwriting. I guess you’d say it’s paid for by volunteers, by gifts from the patients and families themselves. It’s not a glamour disease. It’s not like we can put the picture of a kid on the cover and say: Help this kid stay alive. Parents and grandparents get it mostly, so it’s not sexy, it’s not glamorous, but it impacts a lot of lives: children, grandchildren.

Does the disease strike men and women equally?

Yes, it’s equally men and women, and predominantly Caucasian.

Have WM researchers made any headway in combating the disease?

Because it is so rare it’s hard for doctors to get the critical mass of numbers to make scientific judgments. The foundation also funds research. Some of the newer areas of research, directly because of our involvement, include creating a cell line, which is basically the collection of cells put in a test tube where they can run different types of tests against them. That didn’t exist before. Also, we have a mouse model now. They’ve injected the tumors into the mice and now they’ve been able to create a mouse with this particular type of disease, so they can run clinical tests. There’s no known genetic element to the disease; not yet.

Are there other developments that give you hope?

Yes. At IWMF we now have a patient database. We’re still fine-tuning it, but now we can do an average, like the average age that people were diagnosed. We have 200 enrolled now. There are not many rare diseases that have anything like that. We have an internationally renowned researcher on our board of trustees who is interested in it, WM and myeloma.

The object right now is to make WM a treatable chronic disease that you can live with. The researchers realize that cancer is a complex disease and a cure is a far-off target.

But the treatments have progressed. When I was first diagnosed they were saying seven years is the projected longevity; now, they’re saying around 11-15, primarily because of a neuro-class of drugs called monoclonal antibodies, which are new, developed in the last decade or so. But now there are other targeted therapies in development that may change the landscape again. And I think this resource — the IWMF — is clearly helping.