Published on July 30, 2020
New Waldenstrom Macroglobulinemia Patient Story of Hope
Peter DeNardis was diagnosed with Waldenstrom macroglobulinemia in 2003 and is a board member for the International Waldenstrom’s Macroglobulinemia Foundation (IWMF). He shares his personal story of living with Waldenstrom and explains how new treatments for Waldenstrom macroglobulinemia are evolving. He also shares why patients who have this rare cancer can finally be hopeful about the future.
“It’s a very exciting time in terms of being a patient and seeing this happen and knowing that there’s hope within our grasp,” says Peter. Watch to hear the full story.
Transcript | Waldenstrom Macroglobulinemia Treatments are Giving Patients Hope
Hello, and welcome to Patient Power. I'm Suzanne Mooney coming to you from Chicago, Illinois. Today, I'm speaking with Peter DeNardis, who was diagnosed with Waldenstrom macroglobulinemia in 2003. Pete is joining us today from Pittsburgh, Pennsylvania. Pete, thank you so much for being here.
Thank you. I'm glad I could be with you, and I appreciate the work that you folks are doing at Patient Power.
Well, thank you. When you were diagnosed with Waldenstrom, you were 43 years old, you're a husband, you're a father. Your kids were still in school, still living at home at the time. What was that like for you being diagnosed with a rare cancer at that time in your life?
It sort of came out of the blue. It's not something you anticipate by any means. I don't suppose anybody would, but with three young children, it was an especially scary time given that my diagnosis at the time was six years, and my kids were in grade school and high school. And with that kind of a diagnosis, you kind of have that vision that, "My goodness, I'm not going to be around to see them grow up." That was a very emotional and difficult time.
So you received the diagnosis, and then what was your treatment like in the beginning?
In the beginning, because I was very symptomatic, symptoms that I kind of brushed off and thought I had a cold or flu, I was working too hard, but we definitely had to treat it right away. Initially, we tried, and this was back in 2003, 2004, we tried the heavier type of chemos. First, we tried to cladribine (Leustatin) to see if that would work. It had no impact. And then we went with things that aren't really used that much anymore; Fludarabine (Fludara), cyclophosphamide (Cytoxan), and rituximab (Rituxan). They worked, they also did a job on my immune system, so we had the watch for infections and take antibiotics along with the chemo treatments. Fortunately, I was still able to work at the same time I was weak, but I was still able to work and during the time that I was going in for treatments at the infusion center.
That was 2003, so now we're almost 17 years later, and it's my understanding you've gone through a couple more treatments since then, right? It sounds like you've seen a lot of changes in how Waldenstrom's is treated from when you were first diagnosed in 2003 until today.
Yes. The disease itself, as most people that are familiar with Waldenstrom's know it's not curable. Fortunately, there are treatments that are very effective. And in fact, there's so many more options there are today than there were back when I was first diagnosed. One can live a fairly productive life with the disease, but that's not to say it will be easy for everyone. Every patient, even though we all have the same disease, every patient is impacted differently. I'm a classic case of an unusual circumstance where I was first treated in 2003, I got maybe six years of remission out of it.
And at a certain point, one of the markers, the immunoglobulin, and the IgM started to rise. We were planning on a vacation at the time overseas so we did that. But towards the end of the trip, I started to feel sick and tired. When we came back, the immunoglobulin number was rising, my hemoglobin was dropping. I ended up having hypogammaglobulinemia, I also had which is just other immunoglobulin numbers were suppressed, and also cold agglutinin disease (CAD) where we had to be careful, and also a lowering hemoglobin to the point that I was passing out whenever we would go out to the store or something like that. We had to be really careful.
And on top of that, as if that wasn't enough, I also had an unusual manifestation of tissues or tumors at the base of my spine that were causing severe pain. And so with all of that, again, had to go through the treatment route, but because my condition was so different, my local oncologist, my hematologist conferred also with one of the experts at Mayo Clinic. There are some centers of excellence, let's say, that treat many more patients than others being like Mayo Clinic and Dana-Farber and Weill Cornell.
We did the phone-a-friend kind of option, and they actually agree with my hematologist. The best course of action for me at the time, because of my circumstances, was to go heavy-duty with high dose Cytoxan and also radiation for the tumor. Although for patients with Waldenstrom's, the treatments that you get, you don't usually lose your hair or anything like that. Because of the high dose Cytoxan, I did lose my hair and that was an interesting experience. For males, I guess, not quite as bad of an experience but was still kind of scary to see your hair falling out on your pillow all on its own.
The treatment course, it took a while for it to start working because of my unusual circumstances. I was also on dexamethasone (Decadron) to also help manage the disease. But in time, after a few months of continuing the treatment, it did work. I went into remission, and I went into a remission to a point where, again, this is unusual, all my immunoglobulin numbers are virtually nonexistent. Most patients with Waldenstrom's, they have an IgM number that they have to monitor and keep track of. And we do keep track of mine, but there's this to keep track to see when it goes up or down or whatever. Mine, it doesn't move, which for most people would say, "Yeah, that's great. You're fortunate." Well, yes and no. My situation is, again…So that was 2009, 2010 that I had that treatment. My situation was, again, back in 2017, I had some unusual pain near my sciatic nerve. And we just thought it'd be a good idea to just check it out and see what's going on.
Initially, they thought it was a non-malignant schwannoma, and went in and did surgery. When they did the surgery, they found that it was the LPL, lymphoplasmacytic lymphoma tumor. That Waldenstrom's appearing yet again. So even though there was no IgM in the blood, the bone marrow biopsy says virtually zero infiltration, I still have Waldenstrom's cells. Again, the surgery pulled most of it out but it's so entangled with the nerve endings there that they couldn't get it all out. The idea was, again, radiation, and that held things at bay and seems to be working.
Although recently, just last December, I started to feel some unusual soreness in that area and we decided to, instead of going radiation route, trying ibrutinib (Imbruvica) since it has shown that it does work on when LPL cells impact nerve endings and possibly even tumors so we're giving that a shot and I'm on a very low dose and I'm still taking it now, 140 milligrams a day. Minimal impact on me from a side effect perspective, but we're hoping that it's going to do the trick for me. I can count myself fortunate even though I have a disease that recurs that there are great treatment methods available for me, thanks to the researchers that are out there that continue to work on behalf of myself and other patients like me. I should probably throw in there that throughout that 17-year span, my daughter got married so I was able to walk her down the aisle. My oldest son got married and I was able to celebrate his wedding. And my youngest son is still going to college, but at least I get to see him have that experience. I really count myself fortunate.
That's wonderful. You've been through a lot in the past 17 years. You've surpassed that initial prognosis that they gave you of six to seven years. You've blown right past that. How has this experience changed you, living with a rare cancer, even in those times when you weren't going through active treatment? I'm guessing it must've changed how you see yourself, how you see life, the world. What do you want to share about that?
Probably like most cancer patients will say. It changes their perspective on life. The things that used to bother me, the little things that you would get worked up over, doesn't bother me anymore. It just doesn't... My perspective is just to take each day as it comes. Enjoy the little things. I mean, just going for a walk is a special moment. Spending time with my wife and kids. Even just watching a show on TV that we enjoy. That's kind of where I'm at. I can't let things bother me because in the grand scheme of things, cancer is my worst enemy and I don't need any other enemies. That's enough for me. When I was first diagnosed, I researched all kinds of stuff. I looked up the prognosis, the medications, the natural methods, the homeopathic stuff, I looked all of that up and I researched it and I tried some of it.
I've gotten to the point now where I have a BS meter where I can see all that stuff that's out there on the web and things and you know right off the bat who's trying to take advantage of you. And so I have a perspective of having a healthy skepticism, let's say, about any claims that are out there about a wonder drug. Even if something's in trials, I know just be patient. Give it time to work out, and stay healthy in the meantime. So just try to enjoy every moment.
It sounds like there is reason to be hopeful. What would you say to someone who has been recently diagnosed? What would you want them to know as they head down this path that you've been traveling for many years?
The treatments that are in trials right now, the immunomodulatory agents are significantly better than the treatments that there used to be. There are much lower side effects and they have a much faster impact on your disease burden. The future within probably five to 10 years is probably that this will be a chronic manageable disease. I really believe that with the immunomodulatory agents like acalabrutinib (Calquence), ibrutinib, zanubrutinib (Brukinsa), the other “inibs”, whatever. It's a very exciting time, granted you have cancer and lymphoma or Waldenstrom's, but it's exciting time in terms of being a patient and seeing this happen and knowing that there's hope within our grasp. That's the thing you can take away from that.
Sure, you feel rotten. You're fatigued. You have severe anemia or whatever but the treatments are there to help you. The important thing is to communicate with your health professionals, find out resources that are out there to help you, and take advantage of them. They're all out there to help you. Don't do it alone. That's the important part. Don't wallow in self-pity, that does not help things either. A positive mindset doesn't cure you, but it improves your quality of life significantly.
So if you are watching at home, listen to what Pete is saying, have a positive attitude. There is reason to be hopeful. The treatments are getting better. You've heard him talk about watching his kids grow up when there was a point in his life he didn't think that was going to be possible. So do your research, find a specialist that you're comfortable with, and connect with others too. I know Pete is really involved with the International Waldenstrom Macroglobulinemia Foundation, which we'll talk about in another video. But there are resources out there for you.
Pete, thank you so much for sharing all of your experience with us today. Thank you for being here. And for those of you at home, thank you for watching. I'm Suzanne Mooney from Patient Power. Remember, knowledge can be the best medicine of all.