DESCRIPTION
In 2017, Amanda Ferraro found herself feeling tired all the time. When the fatigue persisted, she went to the emergency room. Doctors told her she had mononucleosis, a diagnosis that she thought made sense.
Amanda lives in Manalapan, New Jersey. She is a single mom, who works as an advocate for cancer patients. She is also active at the New Jersey statehouse, pushing for laws that come to the aid of cancer patients. Amanda enjoys playing the piano, going to the beach and watching her young son play football.
After being diagnosed with mono, the fatigue wouldn’t go away and she had bruises. That’s when she sought additional medical attention, which included blood work. The tests revealed the presence of blast cells, which got her doctor’s attention. He then called for a bone marrow biopsy, which resulted in a diagnosis of acute myeloid leukemia.
She was put on a chemotherapy regimen, which included cytarabine. At one point, Amanda Ferraro was hospitalized for 33 days. Her stress level was doubled because not only was she dealing with cancer and chemo, but at the time, her son was three years old and couldn’t understand his mom wasn’t at home.
Amanda eventually went into remission, but six months later, following a second bone marrow biopsy, the acute myeloid leukemia returned. She learned she had the TP-53 gene, which had mutated, causing the relapse. Before going on a second chemo regimen, Amanda’s doctor told her she has a ten percent chance to live, and before the second regimen began, he gave Amanda a week to get her affairs in order. Because a second chemo regimen did not give her a good chance to survive, he said she would need a stem cell transplant. That meant finding a donor, and miraculously, one was found.
Amanda Ferraro said she had to go back on chemo before the transplant could be executed, but once it was, she almost instantly felt better.
Although she has survived acute myeloid leukemia twice, Amanda still has to occasionally deal with the effects of the stem cell transplant. One of those effects is Graft Versus Host Disease, also known as GVHD, in which the donor’s immune system attacks Amanda’s body, causing various flare-ups. Amanda says a little bit of GVHD is actually a good thing because it shows the donor’s immune system is establishing its presence, but too much manifests itself in lots of bad ways.
GVHD can result in pain to Amanda’s bones and joints. GVHD can also invade her mouth, with dry mouth and/or multiple sores. GVHD also gets in her blood. If she eats the wrong food, her stomach can swell so that she looks six weeks pregnant. GVHD requires lots of monitoring and that means having conversations with the gastroenterologist, the oncologist, the dermatologist, the orthopedist, just making sure that the body can function and do what it is supposed to do on a daily basis.
Amanda Ferraro still gets fatigued. There will be some days in which she just stays in bed. If she goes on a vigorous walk, she knows that for the next two to three days she will have to take it easy. These are her bad days, which she accepts as being tied to cancer, GVHD, and re-learning how her body works. There are also good days. If her health was at 100 percent, pre-diagnosis, on the good days, Amanda says feels like 90 percent.
Despite any of the difficulties that come her way, Amanda counts her blessings, and is very happy to celebrate life with her son.
Additional Resources:
Leukemia & Lymphoma Society: https://www.lls.org
TRANSCRIPT
Bruce Morton: All cancer journeys are difficult, but for our guest, hers was made more difficult by a misdiagnosis and a relapse. This is the Cancer Interviews podcast, and I’m your host, Bruce Morton. It was a challenging process, but Amanda Ferraro of Manalapan, New Jersey, survived acute myeloid leukemia, and we are going to hear her story, a story that inspired her to write a book. So, here she is, and Amanda, welcome to Cancer Interviews.
Amanda Ferraro: Thank you very much for having me.
BM: Amanda, before we get to your cancer journey, we would like to learn a little about your life away from cancer. If you would, tell us about where you are from, what you do for work and what you do for fun.
AF: My name is Amanda Ferraro. I live in New Jersey, in Monmouth County. For work, I am a patient advocate. I work with cancer patients, as well as government policymakers to make laws that help cancer patients during their cancer journey or during survivorship. For fun, I love playing the piano. I am one to sit on the beach in the summer in the sun of course with my sunscreen on and an umbrella, just in case. I do wear UV protection clothing, as well. I love watching my son play football. I love being a mom and being able to do all those things with him.
BM: As for your cancer journey, for all of us cancer survivors, there was that juncture when we learned something with health had changed for the worse, something that required medical attention. For you, what was that moment like?
AF: I was not feeling well in March of 2017. I went to the emergency room after feeling very fatigued and a little drained. We thought it was just me not having enough sleep, I had a three-year-old, but my mom took me to the emergency room that night, just to get checked out. They told me I had mononucleosis, which was an understandable diagnosis because I had all the symptoms. The doctor told me to get a cardiologist and have an appointment because I was having some flutters in my heart, but we were going to have it checked out. I was told to eat some red meat, to go home, rest up and I would feel fine in about a month. That’s what I was told my very first time. Over the next two months, in April and the beginning of May, it kind of really got worse. My symptoms grew worse. I had bruising. I was lethargic. I was very pale. I couldn’t catch my breath when I was walking. No energy. Then I decided one night that I would go back to the emergency room because at that point I felt like I was dying. So, I went back to the ER, and I explained to them what was going on, and I was very lucky to have a different doctor this time. He listened to me, thankfully, did blood work and went back into the files to look at my results from March 2017. That is where he found I did have fifteen blast cells in my blood that was overlooked back in March and because of me living with cancer for two months without it being checked on, it was so bad that my hemoglobin was about a 5.2. The doctor in the ER said if I waited to go to the hospital, I might have passed away in my sleep that night.
BM: So what procedure did this good doctor recommend as being next for you?
AF: In the emergency room he suggested that I have the blood transfusion because of my low hemoglobin, in the CBC (complete blood count) and the metabolic panel he ran on my blood, they found like 84 blast cells. You know, blood cancer is a little bit different than breast cancer or colon cancer. When you have blood cancer, it is basically your whole body and you start off with Stage IV because it already has metastasized. Where your blood goes is where the cancer goes. In blood cancer for leukemia, there is not Stage I or Stage II, you are at Stage IV from the very beginning. So, I had the blood transfusion and I waited overnight in the hospital to see the oncologist the next morning.
BM: In learning a little bit about your story, I learned that part of it included a bone marrow biopsy. For people following your story and may find themselves in your shoes, describe your experience going through a bone barrow biopsy.
AF: I had heard about bone marrow biopsies before, but I wasn’t sure what it was. It is basically a needle that is quite large, I would say maybe seven inches long and the doctor takes almost like a screwdriver and screws it into your bone so that they are able to put the needle inside the bone marrow so they can suck it out. It is extremely painful. For adults, they do not put you under for this surgical procedure, but they do do localized numbing. I was numbed and they put the screw in first, then they put the needle in and start taking the marrow, it was the worst pain I had ever experienced. It almost felt like my bones were crushing, like an elephant was sitting on my leg and my bones were about to rupture. It is intensely painful to have that procedure done.
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Amanda, for you, when you first got cancer, we done more than 100 of these interviews, and your experience may be unique. Most people learn they may be getting cancer, then they are diagnosed. In your case, you were walking around with cancer for two months and didn’t know it. How difficult was that to process?
BM: It was very difficult mainly because my sister had had cancer when she was younger, so I was kinda able to see what she went through. There has been cancer through my family and with each of those cancer diagnoses, there was a tumor and there was doctor appointments and MRIs, CT scans and there was waiting for results. I went to the hospital because I thought it was something else and learned I had cancer. It literally changed my life. My life went from I was a full time stay-at-home mom with my three-year-old son, to now I am cancer patient and I am needing full time care, life is a little bit different now.
BM: Now that you have cancer, you have to be treated and that means a treatment regimen. What was your treatment regimen?
AF: I decided to get a second opinion. We left the hospital and went to another hospital. That is where we ran into a lot more testing, some more blood cultures. We did more metabolic panels. They looked at how fast my blood produces. They ran so many tests. That is when we found out it was acute myeloid leukemia. The doctors at that hospital said that they felt uncomfortable treating me because of how bad the cancer was. So, we got a third opinion, and that is how my regimen started. I wanted to go to the best hospital that there was, and I wanted to get the best doctors I could get, ones that had amazing bedside manner, and would speak to me in the way I wanted to be spoken to. I wanted to be a part of my cancer journey. We ended up arriving at the third hospital about a day or two after I found out it was leukemia. My oncologist was absolutely amazing. The day we arrived, my mom, my dad, my son, my sister, and my stepfather were all in the room. My oncologist explained to all of us what my regimen was going to be, what he was expecting, and the time he was expecting me to take. He was open and honest with all of us. So, we knew that for leukemia, you have induction chemotherapy, which I went through. I had cytarabine 7 +3, which is a week plus three other days of chemo, and that was first. Then after that I had to stay in the hospital until all of my counts came down, which usually happens a week or two after chemo. During that time I would have blood work every single day to monitor my counts and I had to take more medications, and I basically just waited until all of my counts went down so that they could bring my counts right back up. They checked every single day for blast cells and white blood cells and hemoglobin, and they wanted to monitor what my body was doing. That is why I had to stay in the hospital for 33 days. That was my very first induction chemo. Then after my induction chemo was over, I was able to go home, but I had to go back and forth to the hospital every other day for blood work, to see if I needed a blood transfusion or platelet transfusion and they just wanted to monitor me. So, once my counts came up a little bit, then they made it every three days. Once I was over that three-day hump, I went once a week. Then once my counts came back up to normal, I was once every month. Once everything was good, I had to go in for consolidation therapy, which is almost the same as induction chemotherapy, except you get to go home after the week. So, I would have chemo for seven days. Then I would be going back home, but I would have to go back to the hospital every other day and one my counts got to a certain point, it was every three days, then once a week and then once a month. I had four consolidation therapies. I was diagnosed in May 2017 and I was told I was cancer-free in February of 2018.
BM: As you have gone through chemo, we have had many guests who have had chemo and to varying degrees, it was unpleasant for everybody. From a physical perspective, in your case, what was the toughest part of chemo?
AF: I have two. My appendix almost ruptured foru days into chemo, so I had to have an emergency appendectomy, which was very scary because the hospital where I was treated never had surgery on an active chemo patient before. The chemo took a toll on my body and unfortunately my appendix couldn’t withstand the treatment. That’s probably number one because the hospital didn’t know if I was going to make it through surgery and they couldn’t just let it rupture because that would cause cepsis, then I could have passed away from that. But the other difficult part, other than my organs not wanting to work would definitely have to be the fatigue. For me, the fatigue was the worst part. I was in the hospital for a long time, but I would call my son every single day. Just getting up to go to the bathroom was so difficult and I was in so much pain and I feel like the fatigue made it so much worse for me.
BM: Now let’s talk about another component. You briefly mentioned your son, but while you are going through all of this physically, how did you carry out your role as a mom?
AF: When I was diagnosed, I felt like I was the only person in the world that this was happening to. I felt like a horrible mother. I knew my son was going to feel abandoned. I literally put him to sleep one night, then I didn’t come home for 35 days. There were a lot of emotions there. I felt like I was abandoning my child. I felt horrible because it was out of my hands. It wasn’t my choice to have cancer, so it was something I had to face, but I didn’t know how to explain it to him. I didn’t know what my life would look like. I didn’t want to make promises I didn’t know I could fulfill because I didn’t know what was going to happen, and I had to be strong for him and show that things were going to be okay and that I wasn’t going to cry, that everything would be fine. I quickly learned that that was wrong, but in my mind, I felt like I had to be the strong mom and show my son that everything was going to be okay, and this took a huge mental toll on me because I knew that I couldn’t promise anything, and I didn’t want to lie to my son. There was this fear of the unknown that was lurking at every corner, but I didn’t know how to express it to him. He was three years old. I just felt very alone, and it was so difficult. I think I cried myself to sleep almost every night. I would cry after getting off the phone, and he didn’t understand why I was away. Phone calls would be him crying, begging me to come home, apologizing for being loud or making a mess, but he didn’t understand that it wasn’t his fault was difficult as well. I would recommend therapy or talking to a therapist for anyone going through this with children because it is very, very difficult.
BM: Amanda, as if all this weren’t enough, at some point you learned that you had a relapse. Could you about that and how difficult that was.
AF: When I relapsed, it was about six months after I learned I was cancer-free. I was on my stepdad’s boat and all of a sudden, my face started swelling. I was having tooth pain. So, we rushed back to the marina, I brought my son back home and I went back to the emergency room because I thought the problem was my tooth. They checked me out. They did blood work. They found one blast cell in my blood. They saw that there was an abscess in my painful tooth. The ER told me he had contacted my oncologist, revealing that I had one blast cell in my blood, but I did have an abscess in my tooth and I had to get that fixed before I could go through any other testing. So, I was released from the hospital that next day. I spoke to my oncologist, and he said we shouldn’t panic, but he wanted to do a bone marrow biopsy to see what my marrow looks like, and we will go from there. We are not worrying about a blood test, so he kind of calmed me down a little bit and told me to get me tooth in order. I had to go to a dentist. I had the tooth pulled then we had the bone marrow biopsy. So, I learned on September 11, 2018 that I had indeed relapsed. Then my doctor gave me one week to get my affairs in order. He said that when chemo doesn’t work for leukemia and they found a genetic mutation, which is TP-53, which is cancer-causing and the leukemia coming back, my oncologist gave me a ten percent chance to live and said to make a will and prepare my family. She gave me one week to do that, and on September 17, about nine days after my son started preschool, I went back into the hospital for my second induction chemotherapy. That chemo was done with strong medication called MEC, and we needed that because of the genetic mutation that was found. A lot of times with leukemia patients, they find TP-53, which has mutated, but it has just in cancer cells because it is a cancer-causing mutation. Everyone has it in their body, but when that gene has mutated, you develop cancer, and there are certain types of cancer with this mutation. There is leukemia, carcinoma, sarcoma, breast cancer, skin cancer and cervical cancer as well. We found out we had that mutation. My mom, my grandmother, my sister, we all got tested for it and during my chemo we found out that we are one of five families in North America that have this gene mutation that is generational. So, we found that out during my induction chemo. Because of this, my doctor told me I was going to have a stem cell transplant in order to save my life. In order to have any chance of survival, that was going to be the cure, so about two and a half weeks into my induction chemo, my doctor started to look for a stem cell donor who could be the match. After my induction chemo was over, I was able to go home to my son on October 22, and we found out I had a donor I think about a week or two later, I was so happy and so amazed that someone would be willing to donate their stem cells to me. I was so grateful because someone was giving me the gift of life. I went into the hospital the day before Thanksgiving, November 21. Before you do a stem cell transplant, they make you do chemo, and the chemo regimen for that is very, very strong and harsh. They try to get all of your counts down to basically zero, so that when they give you the new stem cells, they can start working right away. The chemo was so rough for me. I was very rigorous. I had a lot of burning diarrhea, throwing up, so much fatigue. I was very, very sick during that, but once I got the stem cells, everything was great, and I felt like it was a miracle. After you get the stem cells, they give you chemo, I think it’s five days after you have the treatment and that’s to help the graft, which is basically having the donor’s immune system learn your body, and it helps if they give you that chemo because it is trying to whip the new stem cells into shape. Then after I received the stem cells, I was learning my body all over again. I was able to go home December 19, which was amazing because my son’s birthday is on Christmas Eve and then I was able to be home for Christmas. It was a long road because it was induction chemo, I was home for three weeks then I went right back in for the stem cell transplant, but I was so grateful to get that cure.
BM: Let’s think of your health today and compare it to your health, pre-diagnosis. If your health before the diagnosis could be thought of as 100 percent, what would you say your health is, post-treatment?
AF: It depends on the day. Today I would say I am at 90 percent. I am having a good day. I don’t have any side effects. I am able to walk around, enjoy the weather, and I am talking to you, which is awesome. Because of the stem cell transplant, I have something called Graft versus host disease, or GVHD, which is when the donor’s immune system attacks my body and that causes my flare-ups, so I do have Chronic Graft Versus Host Disease in my bones and joints. Sometimes my joints can be very painful. Sometimes I can’t walk. I have also preosteoporosis, it’s like one step before osteoporosis, so I started treatment for that, and that causes pain, a lot of pain. I have GVHD, so that is dry mouth. Sometimes my tongue twists and I stumble over words. That’s just from the dry mouth and the GVHD. I get sores sometimes, sometimes my tongue will swell. And I have blood GVHD. Sometimes I cannot eat certain foods. My stomach will swell so I look like I am in my second trimester and that is very, very painful when it happens, and when it happens, it happens, very, very quickly. There is nothing to prevent that from happening, it’s just my body. A little bit of GVHD is good because you know the donor’s immune system is working, but too much GVHD is bad; so, there is always monitoring, having conversations with the gastroenterologist, my oncologist, the dermatologist, the orthopedist, just making sure that the body can function and do what it is supposed to do on a daily basis. Sometimes I am in bed during the day. If I push myself too hard, then I have to back off and take it easy because my body needs to recover from that, and that’s from having cancer and GVHD. So, it really does depend on the day. Some days are better than others, but I am alive. I am here today to talk about it, so if I have a bad day or a good day, I just try to focus on my blessings.
BM: Amanda, we are going to wrap things up, but before we go, we want to hear about something briefly mentioned at the top, and that is your book. If you would, tell us about your book, its name and what it’s about.
AF: I was very lucky to co-author a book. It’s called “Perspectives on Cancer, Volume Two,” you can go get it on Amazon, there is an e-book and there is a paper book. It is under Tim Sohn as author, he is the man behind the book. It was his idea, so it is a book about cancer perspectives. It is from cancer patients, caregivers, survivors and from people going through active treatment and it is different perspectives of what one went through and how one overcame it and what has helped. There are so many amazing authors in this book. I am so lucky to be able to be part of it because our journeys are put together to help other people and just the feedback we have received so far with helping people, and people knowing that they are not alone in what they are going through. Maybe they felt alone because they were a mother or a single parent or they didn’t have insurance and they didn’t know how to navigate it, but by being able to share our stories, people can realize that they are not alone and that there are other people that have gone through what you have gone through and I am so grateful to be a part of it because I love helping other cancer patients and I feel like this book is helping so many people; but one day I will have a book, an autobiography, I have definitely started it, and that will come out one day.
BM: She is Amanda Ferraro of Manalapan, New Jersey, and she has shared a tremendous story with us as a two-time survivor of acute myeloid leukemia. We would like to thank you so much for sharing your story with us. Thanks for being with us on Cancer Interviews.
AF: Thank you so much for having me. I appreciate being here.
BM: And we want to remind you as we always do when we conclude that if you or a loved one are on a cancer journey, as Amanda said, you are not alone. There are people out there, just like Amanda, who can be of tremendous help. So, until next time, we’ll see you on down the road.
Additional Resources:
Book: “Perspectives on Cancer, Volume Two,” by Tim Sohn
https://amzn.to/3vzhA73 Perspectives on Cancer Vol. 2
Support Group: Leukemia & Lymphoma Society: https://www.lls.org
SHOW NOTES
TITLE: Amanda Ferraro – 2x Survivor of Acute Myeloid Leukemia – Manalapan, New Jersey USA
Thanks to a misdiagnosis, for two months Amanda Ferraro was walking around with acute myeloid leukemia and didn’t know it. But after a return to the doctor’s office and subsequent bone marrow biopsy, Amanda was diagnosed. After an aggressive regimen of induction chemotherapy, she went into remission; but six months later, the cancer returned. Amanda underwent another bone marrow biopsy and was put on another chemo regimen. She was told the only thing that could save her would be a stem cell transplant. Miraculously, a donor was found, and the transplant was performed. These days Amanda is a patient advocate and pushes for laws in the New Jersey Legislature that come to the aid of those diagnosed with cancer.
Additional Resources:
Support Group: Leukemia & Lymphoma Society www.lls.org
Time Stamps:
03:36 Amanda’s journey began when she experienced fatigue, initially diagnosed as mononucleosis.
04:45 When symptoms worsened, she was eventually diagnosed with cancer.
07:59 Describes bone marrow biopsy, which preceded her diagnosis.
10:18 Amanda relives the realization that because of a misdiagnosis, for two months she had been walking around with acute myeloid leukemia and didn’t know it.
16:34 The toughest part of her induction chemo regimen.
18:25 The mental and emotional challenge of being hospitalized while being a mom.
21:15 Amanda recalls being told she had relapsed.
25:45 Learned she would have to undergo a stem cell transplant.
27:45 Health turned for the better after the transplant.
KEYWORDS (tags):
blast cells
bone marrow biopsy
acute myeloid leukemia
induction chemotherapy
cytarabine
tp-53 mutation
mec
graft versus host disease
amanda ferraro
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