The “A Day in the Life” podcast from the International Myeloma Foundation (IMF) features messages of hope and resilience for myeloma patients, caregivers, and their loved ones.

We recorded the following interview with Chrissy Degennaro in July 2020.

In Memoriam: The IMF was saddened to learn that Chrissy passed away in June 2021. A friend and inspiration to many IMF staff members, Chrissy is deeply missed. In the following interview, Chrissy talks about her challenges and the strength she found while living with myeloma.

 

Transcription:

Host: I’m talking to Chrissy Degennaro who was diagnosed with multiple myeloma in 2006, and here we are in 2020 and we are so happy to hear from her and have her share her story. For starters, we’d like to ask you Chrissy, just to learn a little about you. How would your loved ones describe you?

Chrissy: That’s interesting because I think people see me differently than I see myself. And um, people see me as a strong person, and I think I’m just a regular old girl, doing what I need to do to survive.

I think people think I’m giving I’m giving, I’m kind, I’m caring, I’m strong, adventurous, silly. There are a lot of sides of me. And I guess it would depend who you are talking to.

Host: Of course, and those are all really good qualities. This a little different question, it takes you back all the way to 2006, if you can recall what it was like to be diagnosed with multiple myeloma, and how it might have changed your life at the time, or how it might have interrupted the way your life was going?

Chrissy: Sure. It definitely interrupted my life. I was 36 at the time, and I had a one-year old. And a doctor had told me that my labs were off, and that I had dizzy spell. And I thought it was just because I was a new Mom, and I wasn’t eating right. And then the doctor said I was anemic, and I thought maybe he’ll just tell me to eat some red meat. And my family doctor told me, “You need to see a hematologist.” And I didn’t. I had no idea a hematologist was a considered an oncologist. So I went to the doctor, I was on my way to work. And I’m talking to the hematologist. And he blurts out, “I think you have multiple myeloma cancer.”

And I’m like, “Wait, what? Melanoma, what?”

And he starts drawing on the paper on the exam table, and he says, “You have this. You have this. You have this.”

And I’m still thinking of the word cancer. And I can remember thinking about the teacher in Charlie Brown, how everything sounds like, “Wah, wah, wah, wah.” So I didn’t hear anything he said after cancer. I had no idea what multiple myeloma was. This was really before…This was before social media…before everything.

So I left there. I called my husband. He was at the park with our one-year old. And said, “Hey, I’m sick. I have cancer.”

He was like, “What?”

I mean, you know, this hit us like a ton of bricks. No idea whatsoever. And it definitely interrupted our lives. I remember going home and looking on the Internet and googling multiple myeloma. And reading these horrible, terrible things. A lot of things were outdated. Um, I didn’t have anybody to ask. You know, back then, when you’re 36, the people that you know that have cancer are the grandmothers. And you hear a lot about breast cancer. And all these things. And I did not have any friends to talk to. I had nobody.

And I googled and I found the International Myeloma Foundation. And I called. And I phoned Paul. And Paul was my saving grace. He sent me all kinds of brochures, and flyers, and information, because you couldn’t find any good info about multiple myeloma on the internet. Like I said, there wasn’t any social media. There wasn’t anything but outdated information.

And he told me about specialists, and it made sense. Why go to the local guy who knows a little bit about every kind of cancer? Or go to one guy, it could be a woman too, I didn’t mean it that way, that knows everything about this disease, that I think at the time, affected 2% under 40. You know, I hit the jackpot, but with the wrong thing. So he gave me the name of two doctors within a three-hour radius. I made appointments with both, and the one who took me the quickest is who I went to. And I ended up in Hackensack, with Dr. Siegel and his team, and he immediately started me on Thalidomide, which is one of the first drugs approved for myeloma. And kind of ancient now. And, um, we went forward. I embarked on this, you know, fourteen-plus year journey of myeloma. I was raising my son. I was in and out of work, depending on my treatment. It was, um, a new world to navigate, besides being a new parent, navigating a disease that you had never heard of, that was incurable. It was scary. It definitely um...It definitely changed our life.

Host: And you have a son or daughter?

Chrissy: I have a son.

Host: And so he’s 14, one of the things that struck me…

Chrissy: Actually, he’s going to be 16 Sunday.

Host: Sixteen years old, so how would you say, or what kind of advice would you give to another myeloma patient who was recently diagnosed and is also a parent?

Chrissy: Sure. And that’s why I want to do this. I want to let parents know that you can learn to live with cancer. You can find, I know a lot of people don’t like the term “new normal.” In this disease, you have to find a new normal, many times. And you can. And it’s possible. And I have done so many things with my son, because again, it’s incurable. It’s treatable, but it’s incurable. And you just don’t know yourself. And it’s important to hit those milestones and make the most out of everything you do. We traveled a lot.

You find a new normal. You figure out what works for you and your family. If your, If you need support as a family , there’s cancer support outlets out there. There’s Gilda’s Club. We attended this amazing family retreat called Inheritance of Hope, and that gave us tips and tools on how to live our life and be mindful parents in this situation. I’ve just learned along the way.

You know, I didn’t wake up one day, and know how to be a parent, and know how to be a Cancer Warrior. You just learn. But it’s definitely possible, and we’ve done it. Is it easy every step of the way? No. But you find a way to make it work. And even in the bad and sad times, you just find a way to pick yourself up and keep going, and I’m actually thankful that I do have a son because this is what is keeping me going.

I honestly, didn’t expect to see him turn 16 this Sunday.

But as a family, you just find the support and find your way.

Host: That’s great… So. So one of the things that is going to be inspiring to a lot of patients is that this has been a really long, and I understand, pretty difficult journey for you. You have undergone, has it been 27 different types of treatment regimens?

Yes, I have been on 27 types of medications. Some were old school chemos, that really knock you down, put you in the hospital, make you sick. Some could have been a convenient oral chemo. But the key here is options. Again, starting out with Thalidomide back in 2006 to where we’ve come is amazing. Because there was nothing, really, back then. And I’ve watched the birth of all these different drugs. And I’ve tried them all. And they have bridged me from you know, one treatment to another.

And yeah, there’s time that I have given up hope. Things have stopped working. And it’s scary. You just have to seek out what’s out there. Have a good specialist. I have had two autologous stem cell transplants. And I have had two CAR T-cell transplants along with that. So I’ve definitely earned my place in going through all that.

But one thing I want to point out, all these years, this was one thing that was important to me, since I was diagnosed, I love to travel. And I wanted to experience things. And in between all that, I thought, “You know what? I want to hit all 50 states before I turn 50. So in between that, um, we tried to take trips, and I got to experience a lot of this with my son and with my husband. And it was great. In November, I turned 50. And July, prior, almost a year ago, I hit my fiftieth state. So that was pretty exciting! So that is an example of living with cancer.

And again, I did it between all of the treatments, when I chances. It gave me things to look forward to.

Host: I think that is so important to remind patients to be planning and finding things to look forward to. Speaking of all of these treatments you’ve been through, you mentioned the CAR-T and the autologous stem cell transplant, and very tough regimens, what treatment are you on now?

Chrissy: Now I’m on selinexor, and there’s been a few times that I have been told by my amazing medical team that we’re out of viable options. Because I’ve taken the road that I want quality over quantity. I want to have a quality — a good quality of life — and I was in this predicament last year, where there was nothing working, and you know, it’s been tough, when you’re told you have no more viable options. And again, I’ve been told this a couple of times. And I’ve been faced with hospice, but I went out and searched and found things and selinexor was approved last July, and I was 100% against it because I saw side effects that seemed like it would give me a horrible quality of life. And I was very, very much against it. It scared me.

I’ve had a long journey, and I’m tired. I don’t want to live life where I’m stuck in bed, and I’m vomiting, and I’m not able to enjoy. So I was against it. I talked to people, and I didn’t want to try it.

Then I saw Cindy, and she is an amazing patient advocate. And she did a video, and she interviewed Dr. Jagannath at Mt. Sinai about selinexor. And he had a treatment option for every side effect. And I thought, “Well, I’m still riding this wave. I’m still here. I want to be here. Okay, I’m going to try it.”

So in September I started selinexor, Velcade, and dex, and four months later, and oh, so I tried not knowing I had a ___, I’m a non-secretor. So I don’t have measurable disease. And I had plasmacytoma tumors all over. And after a PET-scan with two months on selinexor, all of them were gone. They disappeared. Again. Damn. Another miracle for me. And I just had to give it a chance. I just had to try it. And still my last scan, a couple weeks ago, no plasmacytomas.

And that’s how I was presenting because I’m later in this disease. So I didn’t have an M-spike, light chains, anything. So we just have to measure by that. I’m tough. Now I’m a tough patient to figure out. And … So I’m still having success with selinexor.

Oddly enough, I’m not having the horrible side effects that a lot of people have. So I’m so thankful that I tried it because I’ve made it through another Thanksgiving, Christmas. I’m going to see my son turn 16 on Sunday, and that’s amazing. He was one, and now he’s going to be 16.

Host: That is really amazing, and I know that a lot of patients are going to be really excited to hear your story. What kind of advice would you give to patients who have been in the similar predicament where they are not finding options for themselves. How can they be a good advocate for themselves?

Chrissy: Okay, you definitely need to 1) be your own advocate. 2). A myeloma specialist. Again, I’ve had an amazing medical team. I’ve seen other specialists, but the majority of the time, I was seen in Hackensack. Dr. Siegel. Dr. Biran and an amazing group of nurses. A full team. They are like family. I’ve gone to University of Penn. I’ve gone to Mt. Sinai. I’ve gone out there. And you know, you rely on the knowledge and information that your medical team gives you, but you still need to do more. There’s other… there’s trials. There’s an organization Brian started—SparksCures. I definitely recommend that. I put my information in the database. And you know there’s so many trials for myeloma out there, but with my information, we could break it down to see what I qualified for. And he even took it further, and reached out to the pharmaceutical companies to the centers doing the trials.

Unfortunately, because I’m a non-secretor now, I didn’t qualify for any trials. So I felt like it was up to me to reach out to doctors individually. And I did. I had no problem calling a hospital and calling a myeloma specialist doctor who was running a trial. I guess patients don’t normally do that. But this is my life. I just went out and sought my own information. I talked to the International Myeloma Foundation, if I had any questions on treatments or doctors or suggestions. They have been a great resource. You just have to be in charge. You just can’t take. Okay, it’s good to take the advice of your doctors and what your medical team gives you, but you are allowed to do more. You’re allowed to ask questions. And I think people feel that you have to do exactly what the doctor says. And many times I’ve been at a crossroads and things would be presented to me, and I said no I don’t want to do that. That’s not convenient. And they respected me enough. I turned down the CAR T-cell trial 3 times before I finally did it. And I made other decisions. Because I didn’t believe in it. It worked out in the end that I did it, and I think that I did it at the right time. But again, it was all my choice. And again you take the knowledge, information you’re given, seek out yourself, and then you can go on, and you take that and make decisions. You have to be involved. You have to learn the language of navigating a disease with myeloma. Because I’m not a scientist. I don’t have a medical degree. I’ve just learned a lot because maybe I have control issues, but I want to know what’s going on, and I want to understand, and I want to be involved. And I think that because of that I’m still here today.

Host: That’s definitely, and you mentioned, Just like we always say at the International Myeloma Foundation, “Knowledge is power.” And Paul Hewitt, you mentioned him earlier, is an InfoLine Specialist. Can you talk to me about what your relationship has been with Paul or any of the InfoLine team through the years at the IMF

Chrissy: So Paul…Paul is amazing. And you know, he checks in on me every once in a while. And sometimes I’ll just email him out of the blue and say, “Hey Paul, just want to let you know, I’m still alive.”

He’s been great. And I feel very, very comfortable, reaching out to talk to him, shooting him an email, calling him, and asking him, “I’m taking this. I need a little more information on this. What do you guys think about this?” Or this treatment. Or this doctor. You know, can you recommend…Can you ask Dr. Durie?

I’ve been to the Patient & Family Seminars, and I love those. I’ve other people. I’ve gone with people that I have met along the way. I had a chance to meet and talk to Dr. Durie many times. And it’s just good. It’s just a positive place.

The International Myeloma Foundation is a great organization to have in my back pocket. It gives me comfort. Again, in the very beginning, I had nothing. I had nobody. But I felt like I had Paul. And he definitely directed me in the right directions. And when patients need help or are just lost and need advice or guidance. I say, “Hey, call the InfoLine.”

And just last night, Judy sent me a message and said, “Hey I have a patient who is considering CAR-T, would you mind talking to her?” And I’m like, “Absolutely.”

Because we have to share the knowledge and help each other. That’s a big thing. And I like to help people navigate through this, especially newly diagnosed because it’s tough. It’s a whole different world.

Host: You were talking a little about the patient communities that you’ve interacted with. I’m just going to discuss a couple of patient quotes that have stuck out to me. I talked to a lot of patients, just through communications and what I do here at the IMF, and one of them is Yelak Biru, who you probably, maybe familiar with. He’s an IMF Board Member. He’s lived with myeloma for 25 years. And one of things he said, is “We are not our disease.” And another myeloma patient, Valarie Traynham, once said, “Myeloma is something I have. It doesn’t have me.” So these thoughts of you being separate from your disease. Does that resonate to you, with you, and why?

Chrissy: Absolutely. I love both of those quotes. I definitely have myeloma alright, but it doesn’t have me. I think that I’m definitely showing myeloma who’s in charge. And we are not our disease. And it isn’t always easy to get to place where you feel that way because when it is so relevant and your life revolves around going to doctors and chemo and all that. You have to find a place to lock it away where you can go on. And you cannot live like you are the disease. I like both of those quotes, and I’ve actually seen him speak at a Patient and Family Seminar. And he was amazing. So I’m glad that we have him in our community to inspire and show people how long you can live with myeloma.

Host: So what is life like for you right now with the pandemic? Talk a little bit about day-to-day, what things are like for you?

Chrissy: Day-to-day. I have fought too long and too hard to be taken out by COVID so I’m very careful. I’m a very social person. And it’s been difficult, but I almost feel like I have been preparing for this for the past 14 years, having two transplants. Getting sick and having to wear a mask. I wore a mask before wearing a mask was cool. When you can make it a little cooler and have more people wearing it, I – me personally – I have not been to a grocery store yet. I am social distancing. I do see friends and people from six feet apart. Things are starting to open up in our state in New Jersey. I will not be participating. I live near the beach. I do still feel comfortable going to the beach. You just have to adjust. Again, we’re finding a “new normal.”

This is difficult. This is mentally difficult for me. I’m not going to lie. And I still continue to get treatment. That’s very important. We still have to continue going to the doctor and doing what we need to do. I see a local oncologist where I get treatment. I feel very comfortable there with the protocols they’ve taken. I’ve had to go to outpatient at the hospital to get a test of my port. I felt comfortable. I’ve had to go to get a PET scan. Those things you still have to do. You just have to be smart, and make sure you feel comfortable with the environment. And I just want to protect myself because I have a horrible immune system. But I still need find ways to you know, keep my mental health going. Because as people are starting to get out there and live and do things, I feel like I’m side blind. And I’m going to be honest, it’s not easy. But I’ve done this before, just not as long and severe. I will get through this. I want to stay healthy. I want my family and my loved ones to stay healthy. And I want to continue on and just live.

Host: You’ve already touched on this with the way you are as a human being, and what you’ve been through, and that’s the theme of resilience, which has been our theme since Myeloma Action Month. Actually before the pandemic really got to where it is here in 2020, we started out with a theme of resilience, and that is, talking about the ability to recover from or be flexible to adapt to new challenges and difficulties is how we define it here at the IMF. As a myeloma patient, what does resilience mean to you?

Chrissy: Resilience means when you get down, finding a way to get back up. Again, I’m going to be honest. This isn’t fun and games. There are times when you can feel a little defeated. You can feel a little blue and down, but getting back up and moving forward, I think that’s resilience. Like you said, being able to adapt. To keep going and to find a way.

Every time you get knocked over, or there’s an obstacle. There’s a trial that won’t take you. There’s a drug that’s not working. And it beats you down and it makes you sad and scared. You just have to pick yourself back up. Sure you can have a pity party. You can take some time to collect the thoughts and again it is scary. But you just find a way to keep moving forward, no matter what. I don’t know where mine comes from, because I would say, I’m just a regular ol’ fluffy girl fighting cancer. I’m just a regular person. And I don’t know where it comes from, but I just keep finding a way to move forward, to keep going. And sometimes I’m just tired, and I feel like I’ve had enough. But I have a husband. I have a child. I have a mom. I have friends and family. And I’m pretty amazing so they need me around. So I’m going to keep going.

Host: I think I’ve pretty much covered everything I wanted to talk to you about today. But is there anything we haven’t covered that you would like listeners to know about you or just any anecdotal information that you want to share about life itself?

You know what? I’m pretty open and raw. And I do it to inspire others. I can remember when I first started going to see Dr. Siegel in his small office, I was always the youngest person there. And I sat in the waiting room, and I would talk to people, because that’s just me, I’m social. And I met a lot of people. And the older generation, they still cover their mouth and whisper the word cancer. And I remember a woman told me that at her card group, nobody knew she had cancer. You know, people didn’t talk about it back then. I’m not sure why, but I want to talk about it. It’s not a secret. And I want people, I want to inspire people, because I want people to know that all these things are possible. Miracles happen. There may not be a cure, but the longer we stay alive, the faster science catches up. I’m mean there’s so much hope right now that I want people to know that you can live with cancer. You can live with an incurable cancer. It’s possible. I mean, I’ve been doing it for over 14 years. And I’ve done more than just fight cancer, Iike I said, about my 50 states. I feel like I’ve accomplished a lot of little goals. And I always have a bucket list. Every time something goes, something new comes. You need to have things to look forward to. I think that’s important. You need to have something to look forward to.

It doesn’t have to be a big trip. And you have to celebrate the little things. Like okay, your M-spike went down. And it’s just a little bit, but you know what, it went down. So it’s all possible. And I want people to know, definitely, you can live with myeloma. And um, I’m doing it every day.

Host: One last question, this question came as a surprise to me too, you said you traveled to all 50 states. What are some of the most fond memories you have of your most recent travels?

Chrissy: One of my favorite places was Yellowstone. I wanted to see a geyser. And Yellowstone, just riding through there, every corner there was a different scene. It could have trees. It could have meadows. It could have a lake.

Last year, I was kind of in a slump, and nothing was working, and it was about a year ago. And nothing was working. And I just wanted to get to my 50th state. And my childhood best friend Lisa was on board. And I think we booked it on June 29th. And we traveled on the 4th of July. It was that fast that we put this together. And that was an unbelievable experience. I never ever thought I would get there.

And one thing that we did was, we went swimming off of the beach. And we swam with sea turtles, huge, a couple hundred pound turtles, in their natural habitat. They just swam under us. We swam over them, and I wasn’t in my best physical shape. I didn’t feel my best, but I went with the right person. And it was an experience of a lifetime. So I think it’s great that all the people in my life, my loved ones, I have so many travel memories and experiences with each of them.

So that I just thought of that right now. I was thinking of each friend, and each neat thing we’ve done. So I think adventures, experiences, creating memories. That’s what’s all about.

Host: That’s beautiful. And I want to swim with turtles myself. That’s so inspiring to me.

Chirssy: Well, just go to Maui.

Host: Sounds amazing.

Chrissy: They are right there.

Host: Sounds amazing. Once we get out of this pandemic, we’ll see if we can arrange that. But thank you so much for your time today, and I really hoped we reached one of your goals which was to inspire others patients, and just people in general. And I’m so happy that you shared your story with us.

Chrissy: I appreciate you including me and you feel that is valuable enough to inspire others.