Medspoke Interviews Myeloma Patient Phil Falkowitz and Care Partner Barbara Falkowitz About the IMF's Miracles for Myeloma 5K Walk/Run in Philadelphia

Kate: Alright. So, to get things started, would you both mind introducing yourselves?  

Phil: Go ahead. Yeah. Hi. My name is Phil Falkowitz. I'm a long-term survivor of multiple myeloma, almost, I guess, thirty years. And, we're very proud to represent our group and looking forward to many good things, you know, since we started our support group years ago that we've really come a long way and accumulated, a lot of, advocates and, and people in need, and we're really proud of that.  

Barbara: And hi. I'm Barbara Falkowitz. I have been Phil's caregiver for thirty years. It's been a roller coaster ride and a journey, but we're here, and we give a lot of hope to the people who join our support group. Because when they hear how long we've been living with this, they think, oh my god, maybe it's possible. So, you know, we've been invested in the myeloma community for a very long time, and we really enjoy it. 

Kate: That's great. Thank you. Can you both tell us about the miracles for myeloma, event and what it means to you personally and to the myeloma community? 

Barbara and Phil: The Miracles for Myeloma, our support group has been running a race for, maybe fifteen, eighteen years, and the IMF just took it over because a lot of us are aging in our group, and we've got burned out from doing the race on our own. It was a lot of work. But, it is so rewarding to have all these people come together and walk for a cure or a, you know, new drugs or hope, and it's just been a wonderful adventure for us. We really enjoyed this whole community, and we have a lot of support from the Penn doctors; they always come and they give a talk at the race. And, you know, we're proud of it. Yeah. I look forward to paying it forward personally because, through you know, luck and timing and, you know, I've fortitude. I've been able to overcome, you know, some physical disabilities, which myeloma has left me with. But, you know, I thrive on pushing forward and maybe pushing the envelope a little too much, and I hear it from Barbara, but, you know, that's quite alright. At least I think she's used to that. But, you know, if I can be of any guiding light to anyone, and which I have, you know, it's rewarding. You know, of course, there's been much sadness over the years of losing folks, but that is getting a smaller number every year, which is just terrific. Absolutely terrific.  

Kate: What would you say to someone considering participating or donating who may not know much about myeloma?  

Barbara: Well, I would say that, myeloma as an orphan disease has come such a long way. With all this funding from the IMF and the money we raise at these races, it goes to research. And the past several years, every single year, there have been new drugs coming out that get FDA FDA-approved. So people who have myeloma, you may relapse and then you have to beat it down again, and then you might relapse again and beat it down. And now we have so many options out there that this is what we this is what we raise money for to have this, the researchers help us along and, you know, maybe find a cure, but at least they're keeping us alive.  

Phil: Mhmm. Yeah. I think that's the important part. It's manageable. I mean, obviously, sometimes, you know, it gets out of hand. I've experienced, you know, the ups and downs of being healthy, being worried, but big pharma has developed many options for us. And, you know, if one option doesn't work, there's a good possibility you can rely on something else. And, you know, when I was diagnosed, alpha interferon was the best guess that they could use or had at their disposal to fight the disease. You know, some of those drugs have just become archaic with the progress and research that's been going forward for, I guess, the last at least ten or fifteen years. So that's good to see that regularly, you know, it's not the death sentence that it used to be, which is, you know, a relief to many people that just don't know what their journey is going to be like. It won't end as it did in the past years, you know, end in sadness. So it's good. 

Kate: For sure. You have sort of already touched on this, but I would love to sort of dive into your guys' personal journeys a bit more. Phil, if you would mind sharing your experience with multiple myeloma and Barb, your experience being a caregiver and how it's led to both of you becoming sort of advocates in this space.  

Phil: Yes. Right. Well, first of all, Barb is an incredible caregiver. That is one of the utmost praise I could give, my wife that, you know, she's seen, the ups and downs, the surgeries, you know, the caring of our children and grandchildren, and, you know, being strong and showing that, grandpa or dad can get through this in one piece. But it's been tough. When I was diagnosed, I was already in surgery. So my experience of getting multiple myeloma was traumatic in the fact that I was 45 years old. I was in the kitchen making breakfast, and my daughter was getting ready to go to school. And I collapsed. I mean, my spine just gave out. The disease had really got me into a precarious situation. So, I'm sure it was traumatic for her, but myself at the same time. But we survive, and we push on. I went out of the box of regular care, and I pursued a clinical trial at Dana-Farber in 2001. And, that was the beginning of Revlimid. Revlimid, which was a by-product of flutamide, which is a very dangerous drug. But, with constant surveys that I took and I'm being careful. It's actually a tremendous miracle drug for me for many, many years. Kind of stopped working about almost two and a half years ago, but then there were replacement drugs for that, which there weren't. And, I survived it. You know, I have sadness and some survivor's guilt that some of my cohorts were not as lucky as me or the timing was off, but we carry the torch. We go forward.  

Barbara: And as far as my journey, I didn't know what I was getting myself into, but research for me and the Internet was brand new in 1995. There was really very little Internet, and there was very little information that I could gather. And I happened to find the International Myeloma Foundation, and they sent us scores of booklets and brochures. And we travelled up into New York to go to a patient family seminar, which was the best thing we ever did because we were surrounded by other people who had myeloma, other caregivers. We learned a lot. They had renowned doctors talking about the latest discoveries and how to take care of yourself. And that and the IMF has been a support ever since. They helped us start our support group, which we did thirty years ago, and it's still going. And it's stronger than ever now. And I just, did what I had to do. I had young children, and my main goal was to keep them in a normal pace to keep their life as normal as possible. And with the help of friends and family, we got through most of the things most of the time. And now we're lucky enough to have grandchildren. And see them grow up. So it's been, it's been a journey. I think I'm suffering a little bit of caregiver burnout, which I've been talking to people about. And, I plan to talk more about that at the patient family seminar this weekend to see if they have any advice on how I can take care of myself. But, we've done it. You do what you have to do.  

Phil: I can tell you this. I started out a speech one time, and I'll read some of it to you. I've been nuked, poisoned, poked, punctured, stabbed, screwed, sliced, and glued, tattooed from spinal surgeries and various protocols. But I've survived all this. And I can say that I'm a long-term survivor, but, you know, when this all began, a long-term survivor was not in the myeloma lexicon at all. So, I know there's no cure yet. There's great hope and great satisfaction and that pharma has gotten involved in this orphan disease and really, you know, moved us forward. 

Kate: Thank you so much for sharing that. Again, you've sort of already touched on this, but if you could share some of the biggest challenges patients with myeloma face that you wish more people understood.  

Barbara and Phil: Well, that's a tough one. I would say, well, part of the challenge is a financial challenge now because a lot of the drugs they're developing are pill forms. And I know that we have Medicare. Medicare does not cover the drug, the pills. They cover the infusions, no matter how expensive that is, but they don't cover the pills. And so there's a lot of foundations out there that provide financial help that I don't think enough people know about. We're lucky to have a social worker working with our support group, and she helps everybody find resources, and she gives a talk every year on insurance and financial problems. And that's one thing. And, Phil, you could talk about being a patient.  

Phil: Well, you know, quite daunting. By the time I knew it was happening, I don't know if I'm repeating myself or not. I was already on the surgeon's table, being cut open and put back together. So since I'm kind of a workaholic, the times I spent at home, I spent productively, working on my computer, which we back then, you know, the Internet was a telephone dial up. So I'm really going back and digging up old technology. But it's, again, from repeating myself, it's just a wonder that the big pharma would go after an orphan disease like this. But I guess, the basics of your blood being in a cancerous way. That’s our living, that's our that's our lifeblood, if I can say that. If your blood's not clean and cancer free, it's a challenge. It's a challenge because it affects, you know, your heart and your lungs. And, I'm a physical person, I've always strived to be active, and when I was not active, I was depressed. I mean, it was a challenge. 

Barbara: I would say, to me, from what I saw, the physical part for Phil was his biggest challenge. And at 45 and then when he had surgery again at 48, you know, it was accepting the fact that he had to change his lifestyle, and that was very, very difficult. And I know we've heard from other people in our support group who go through the same thing. You don't want to alter your lifestyle. You want to maintain your lifestyle, but it takes a lot of flexibility and acceptance. And I think that was the biggest challenge.  

Phil: Yeah. I think so. It was the acceptance of this is the way it's going to be. The future could be endowed at times, and no one, especially myself, who tends to get a little anxious that wants to know what the future is going to be like. I mean, everyone's on this earth for a finite time, but you want to make the best of yours and be with your family as much as possible.  

Kate: Absolutely. I would like to pivot a bit to the event this weekend. If you both could share what you're both looking forward to the most?  

Phil: Well, the patient family seminar, as Bart just described, we drove up to, was it Rye, New York? Mhmm. To get our real introduction to MM and to talk to some people about it. First, you have to get out of your mind. It's not melanoma, which a lot of people confuse it with. But, just to get a kind of basics on understanding of what it's all about. Everyone's different, so everyone absorbs the medicines and the therapies differently. And no two myeloma patients are the same, which is a very big thing, that's something that everyone needs to understand, that what works for one person might not for the other. But, you can't compare it's not fair to compare. People who have the disease and saying we have a basic similarity, but, in the big picture, we're all very, very different in how we go through this journey.  

Barbara: I'm looking forward to, we've been on Zoom with our support group since the pandemic, five years. Yeah. I can't believe that. And I am looking forward to seeing some of these people I've met on Zoom that I didn't know when we met in person, the new people, and I want to meet them in person. And I'm looking forward we have a table there for our support group, and I'm looking forward to trying to find new people I can introduce our group to and spread the word. And I'm looking forward to seeing old friends from the IMF that we haven't seen in a long time in person. So, it'll be a great event. And the walk, of course, is always it's always rainy, but it is always uplifting. It is so uplifting to have all these people together walking for a cure.  

Kate: For sure. You both have touched on, the support group that you're a part of, and I'm curious how important is community and events like this for people living with myeloma and their families. 

Barbara: I think these events are important, but we're finding that there's so much competition with the  5k's that are out there now. We used to get a lot of people coming to our races, and, it has dwindled over the years. And, I'm just wondering because everything has changed so much with the Internet that and there's so many more foundations out there that help the myeloma community. But I think it is so important for the myeloma community to have these foundations supporting us and providing these kinds of events. There's webinars constantly and, the fact is you need to educate yourself, and that's the best tool you could have. Right. So, you have to be your own advocate sometimes with the doctors. And, you just have to know a lot. And it's very helpful to have these seminars and webinars so that you can learn everything. 

Kate: Absolutely. What gives you the most hope right now when you think about the future of myeloma research and patient care? 

Barbara: I'm seeing all these targeted therapies where it's no longer you bomb the body with chemo and you kill off all the cells, you lose your hair. It's not like that anymore. There's bispecifics, which Phil has just started on, that are targeting certain aspects and killing off the myeloma cells. And to me, that's the most exciting thing that are coming out now. It's the different types of therapy and the different way of looking at it. And there’s the way that ideas have changed over the years, even the use of bisphosphonates. Phil was bombarded with bisphosphonates in 1995 because that's all they knew, and they didn't know the long-term effects of it. And now they're seeing that less is more and less is better. And so I'm excited that it's come a long way.  

Phil: I just want to add on to what Barbara said that it's probably more I'll say aggressive for the best term. But, to start using some of the drugs that we have early on and maybe pre-empting the disease from getting out of hand. And so, maybe the protocol of let's start instead of let's watch and wait. That was my situation back in the day, and, that watch-and-wait turned into a disaster for me. So, the disease is very smart. It doesn't wait, for you to get your protocols together. It's a very sneaky and smart disease, unfortunately.  

Barbara: And the disease also mutates. So we're finding that a lot of people who are living with it for a long time, like Phil, they become non-secretors. And so it's very hard to track the disease. And, your numbers may look good, but there's damage going on in your body. And that's one of the things that I'm excited that they're discovering, this MRD testing, minimal residual disease testing, and different ways to, measure what the disease is doing. And so, it's very exciting right now.  

Phil: Yeah. Now before the tracking through blood in a more finite way, we were deceived as to what my disease was all about in the beginning and didn't know the vicious turn it could take after consulting with two doctors in two different cities, basically specialists, not as specialized as it is today because, hematologic, oncologists, you know, weren't zeroing in so much of myeloma as just the regular general blood cancers. And that progress has been terrific. Really, really drilling down and getting to the root of the well. If we can ever get to the root of the problem, how this thing ever started. Both a couple of doctors asked me, and their best guess was, one doctor asked me if I was a farmer because, was I affected by various chemicals that go into the ground and onto crops and it was rudimentary. But, you know, that was a fast. It's come a long way.  

Kate: For sure. And pivoting back again to the event, if you could send one message to everyone attending or supporting the event, what would it be? 

Barbara: I would just say keep coming to these events, keep supporting myeloma. You know, we're making big progress right now. We need the support of the community. We also need to reach out to those people who don't know about the disease and to physicians, you know, regular primary care physicians who don't know enough about the disease to catch it early. So I would say just keep attending and keep supporting and, you know, keep your hand in it.  

Phil: Yeah. And, as we say, knowledge is power. You need to be your own advocate. And, if you can do those two things, you can, one, feel better about being proactive. And two, that these little things can make a difference. And, yeah, the word hope is used so often and out in the public, etcetera, etcetera. But, I'm not going to say we put a priority on that word, but, hope is just gigantic. It is really something that you can't give up on.  

Kate: Yes. For sure. That's beautiful. To end on a bit of a lighter note, do you have any pre-race traditions or personal rituals before a big date like this?  

Barbara: No. Because, boy, in the past, we did all the work. So the day before the race, we would rent a truck, and we'd go pick up all the donations of water and bananas and everything and balloons for the arch. And we were in charge of that, that was our ritual. The day before, Phil would take off work, and we would go with a couple of other people from the support group who got vouchers from the supermarkets, and we would pick up all our supplies and then bring them there the day of the race. So as of now, we can relax a little bit.  

Phil: Yeah. Yeah. It was I mean, there was just a few core people. Yeah. Maybe six, seven people. Right. They would just roll our sleeves up and just do everything. And we were younger then too. So it was, yeah. Yeah. I didn't mind, you know, getting a truck and hauling, like, seven or eight cartons of, of bananas and cases of water. I mean, it was just a real group effort, but the group was small and involved and intensive.

Barbara: And we also we had the support of our friends and family because back in those days, everybody would come to the race. Everyone would show up and take part in it, and it was just nice being surrounded by friends and family. And you got to know other people's family and friends, and every year, we would see each other. So it was a good ritual. 

Kate: Absolutely. It's nice that you both can relax this year, and it seems like the rain has become a bit of a tradition at this point too.  

Barbara and Phil: Yeah. But this is kind of weird that how come that weekend before and the weekend after are always really nice when our weekend is, you know, depending on the pray, just pray for good weather.  

Kate: For sure. Again, thank you both so much for taking the time to speak to us today.