DESCRIPTION
Don Melillo of West Chester, Ohio, was diagnosed with liver cancer in 2012. At that time, he was told the only way his life could be saved was with a full liver transplant. He is happy to report that today there are other, less-invasive paths to liver cancer survivorship.
It was in 2011 that Don began experiencing continuous stomach pains. He was seen by a gastroenterologist numerous tests and procedures in an attempt to find out what was wrong with Don’s stomach. Then one night in November 2011, he was in bed he was awakened by an acute pain in his stomach. He waited until 5:00 in the morning, woke up his wife and said he needed to be taken to the hospital. The GI doctor said he would run more tests and in February 2012, Don Melillo was diagnosed with liver cancer. It seemed like good news when they told me my tumor was small. The oncologist said one option could be to partition off the bad section of the liver, but that couldn’t happen because of where the cancer was. He said my cancer was on hepatic artery on my liver, which is the main artery that brings blood to the liver. That’s why Don’s only option was a full liver transplant. These days, Don says, it is much easier for surgeons to partition off a bad section of a liver and remove only that.
Don ended up getting a chemoembolization, whose purpose is to shrink the tumor by putting some radioactive materials into it so that it doesn’t grow bigger. That procedure, said the doctor, had to be done before the full liver transplant.
Once the transplant was done, Don stressed over wondering when he went to bed if he would wake up the next morning. That said, Don felt grateful to receive a full transplant because in 2012 he learned that 3,000 patients died while waiting for a liver transplant.
After the transplant, Don’s doctor told him he was pretty sure they had gotten all of the cancer. Don said that was something he would believe when his scans finished years later. Finally, he was told he was cancer free. Thrilled, Don and his wife went out for a nice dinner.
Don says physically he can do whatever he wants. He can mow the lawn, walk ten miles or go boat racing. Don and his wife go on at least one cruise a year.
In terms of increased treatment options, Don Melillo says in 2012, they weren’t using livers that had Hepatitis B or C, but now they can because both can be cured. There was a time when they couldn’t use livers from those with drug habits, but now they can. He says medicine is changing by the day and this can be very exciting for those diagnosed with liver cancer.
By way of advice, Don says to stay positive, rely on your support people, don’t be afraid to ask questions and at all times, be your own advocate.
Additional Resources:
Support Group:
American Liver Foundation: www.liverfoundation.org
TRANSCRIPT
Bruce Morton: When Don Melillo of West Chester, Ohio was diagnosed with liver cancer, he was told a full liver transplant was his only life-saving option. That was more than a decade ago. Don survived liver cancer, but says today there are other, less-invasive paths to liver cancer survivorship. This is the Cancer Interviews podcast. I’m your host, Bruce Morton, and now let’s bring on Don Mellillo. Don, welcome to Cancer Interviews.
Don Melillo: Thank you, Bruce, for having me and I am looking forward to this very much.
BM: And we are looking forward to hearing your story. As is our custom, when we start off these interviews, we want to learn more about our guests, their lives exclusive of cancer. So, Don, if you would, tell us a bit about where you are from, what you do for work and what you do for fun.
DM: I am from West Chester, Ohio, which is just north of Cincinnati, and we have been here now for 30 years. Prior to that, I did live out east in Virginia. I have two daughters and five grandsons, so I always tell people I have a basketball team up and coming. For work, I am retired. What I do for work is that I volunteer a lot on behalf of Donate Life and the American Liver Foundation. Ever since my transplant I have learned to give back as much as I can and try to help other people through their journey. My hobby is hydroplane racing. I officiate hydroplane racing across the United States, enjoy that and love the water.
BM: All of us who cancer survivors ran into a juncture in which our seemingly normal health became something other than normal, which led to a diagnosis of cancer. For you, what was that stage like?
DM: I started with problem s in 2011. I continually had stomach pains. I was working with my GI doctor and going through different procedures and tests and trying to find out what was wrong with my stomach. At one point they thought it was my pancreas. Finally in November of 2011, one night I was in bed sleeping and the pain became so bad I waited until about 5:00 in the morning, woke my wife up and told her she needed to take me to the hospital. I had been in and out of the hospital prior to this on several occasions for treatments and tests, but this was so extreme that I felt I needed to be seen right away. My GI doctor said to me he’d run every test possible, but he was going to talk to some other doctors to see what they think we should do. I really believed in my doctor. He then ordered some scans and tests, and in February 2012 I was diagnosed with liver cancer. Thankfully, he said they found the tumor and it was small, but I thought it was still the ‘C’ word. That was my journey into cancer.
BM: In a sense I have already provided a spoiler regarding your next answer, Don, but I still want to hear you elaborate. At that time, when you were diagnosed, what were your treatment options?
DM: First of all, when I was told, I was waiting for some scans and talking to the doctor. Then Friday came when I knew the tests would be in, but I thought I would wait until Monday. So, Monday happened, and I called the doctor that was in charge of the scans. I was told he was out of town, but the nurse said she would get my folder and read the results. She read me the results and I said to her it sounds like the ‘C’ word and she said it is. Quite honestly, after I picked myself up off the floor, I asked if the doctor wanted to see me, and she said I will learn everything I need to know in the transplant class. That’s how I learned that I had cancer and what was going to happen. I eventually saw the doctor and told him that this may be routine for him, but not routine for me. He went through the various options to me and did talk about partitioning off the bad section of the liver, but that couldn’t happen because of where the cancer was. That’s when he told me the only option was full transplant. Where my cancer was on the liver was on the hepatic artery, which is the main artery that brings blood to the liver. That’s why I could only have the full implant and not the partial. A lot of people don’t realize you can partition off a bad section of liver. That’s why in children sometimes pediatric liver transplants, the donor is the mother or someone living with them. This is remarkable as it is the only other organ besides the kidney that can come from a living donor, but I didn’t have that option.
BM: We’re confident you’ll be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to give a ‘like,’ leave a comment or review below and share this story with friends. Kindly click on the ‘subscribe’ button below and click on the bell icon, so you will be notified when we release a new interview. And if you or a loved one are facing a cancer diagnosis, please click on the link in the description and Show Notes beloe to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
Now, Don, when you first got cancer, it seems like you were provided treatment options, but were only given one bonafide option. So, even though it was an extremely unpleasant choice to go with the full liver transplant, was it a tough call to make?
DM: It was a scary call. After several visits, I was referred to a radiologist because I was told the only treatment that could help me was the transplant. Chemo wasn’t an option for the type of liver cancer I had, so transplant was the only option. We then explored if I could have a partial, partition off the bad section, but that, too, wasn’t an option. I think the biggest hurdle I had to get over was the fact that when we talk liver disease, cancer or whatever, there is a stigma attached to liver disease. Some people will say that you must have partied too much. One of my biggest challenges to myself during that time was to tell people what I was going through because I didn’t want people telling me I shouldn’t have had such good time (with alcohol). I finally overcame that burden of telling people I had liver disease and liver cancer. Even though I was told in February I wouldn’t get on the transplant list until July, during that time I learned of a lot of the questions to ask, the options that would be available. At one time, my radiologist did do a chemoembolization and the whole purpose was to shrink the tumor so that it wouldn’t grow any bigger because you don’t know when you are getting a transplant when that is going to happen, so they want to stop the growth of the cancer. So, we did that, and I remember my radiologist saying to me if I want to live, I have to get the full transplant, but we need to do the chemoembolization. That was just a matter of putting some radioactive materials into my liver and stopping the growth of the cancer while I waited to be called for the liver transplant. That was the only option available to me. Ever since, I have learned a lot more, and I tell people that medicine changes almost hourly and what didn’t work for me in 2012 is available to people are options that I never knew about. Many more options are available today for those diagnosed with liver cancer.
BM: Don, you have talked about the toughest part of the treatment regimen from a doctor’s point of view, but what about you, as the patient? Physically, emotionally, what was toughest?
DM: I know the day I was called, the biggest problem was that I didn’t want to be taken to surgery until my two daughters arrived because I didn’t know whether I would be back. During that time period while I was waiting for the transplant, there were many nights when I went to bed early because one of the problems with the treatment was that you get tired very easily, and my wife would go to bed later. We never shared with each other how we felt personally. I didn’t want her to worry about me and she didn’t want me to worry about her. That’s one of the biggest things that I learned through it all is that your caregiver is so important in your journey. I tell people that so often in the journey, the patient is asked how they are doing, but the caregiver is never asked how they are doing, and so I am very aware of that. The biggest problem was not knowing if I would wake up the next morning, where I would be or if I could get the call in time. The year I had my transplant, 3,000 patients died while waiting for a liver transplant. Fortunately, I wasn’t one of them, but it was a journey that I am glad I took. It has taught me a lot and that’s why I was pleased that I was asked to be part of this today because it is a way to give back and tell other people that you’re not alone, that there are other people having that journey with you and there is support for you. I have had the opportunity to speak with other liver cancer patients and try to get them through their journey.
BM: We have talked about the unpleasant part of your journey, getting the news you had cancer, but now let us switch to a more pleasant juncture, that being when you felt you were turning the corner against cancer. What was that like?
DM: After the transplant my doctor told me he was pretty sure they had gotten all of the cancer. I said I will believe that when I finish going through my scans over the next several years, then I’ll believe it. Every time I went for a scan, it was like I’d wait for the results, and it was clean. I always was positive, even through the journey when I had my cancer, the most important thing is to stay positive, and I have always been able to do that. Even after I had my transplant, I would wait for that day when they would tell me I was cancer free. That was my day. I remember being very happy and having a nice dinner with my wife and saying that we are through this part of the journey and now it is time to give back.
BM: Don, I hope there is a pleasant answer for this question, and I have a feeling there is, but I won’t find out until you answer it. Physically, what is life like after a live transplant?
DM: It’s wonderful. I can do everything I want to do. If I want to mow the lawn, I can. I don’t like mowing the lawn, so I let someone else do it. I go boat racing, I officiate boat racing. If I want to walk ten miles, I could walk ten miles. I can basically do what ever I want. During COVID, I always said we have to be careful because of our immune systems; but I am going to control COVID, I am not going to let COVID control me. My wife and I, we take at least one cruise every year. We enjoy life. We enjoy our five grandchildren, two of which I would not have had I not had the transplant. I hope to see all of them graduate from college someday. I enjoy life, I enjoy giving back. My daughter once said, “Tell people you are a professional volunteer.” That’s what I try to do, and I try to help other people as much as I can.
BM: Don, I want to circle back to an area you addressed briefly earlier. I know this is a subject that is near and dear to you and one that should be amplified. So, now is the time to amplify it. You were diagnosed with liver cancer in 2012. That was more than a decade ago. These days, are there alternative treatment options for those who would like to avoid a full liver transplant?
DM: There are. I had mentioned earlier you can partition the bad section of liver, off. I know in a couple cases that’s what happened. I know a lady I was introduced to that was going to need a transplant, but they were able to take a partial section of her liver off where the bad part was, and she is doing very well. The liver will regenerate back to full size in about 16 weeks. It’s an amazing process. There are other treatments, the clinical trials that I never knew about that are now available. The last two years I have been part of the Department of Defense research proposal group and am a peer reviewer and looking at research studies, looking at how to stop liver disease and stop possible cancer. Every time we are turning around there is a breakthrough in medical diagnosis and cures. I don’t know of everything, but the organizations I am involved with are doing everything they can to make people aware of options that were maybe unavailable to me. I point out that in 2012, they weren’t using livers that had Hepatitis C, but now they are because there is a cure for Hepatitis C. They’re providing livers with Hepatitis B because that be controlled with a pill. They weren’t using livers from drug overdoses, but now they are because they know how to handle that. Every day medicine is changing.
BM: Don, you have talked about giving back to others now that you have attained survivorship, but let’s talk about an organization that has given to you and others as well. It’s the American Liver Foundation. Could you let people know what ALF has done for you and what it can do for others?
DM: American Liver Foundation, I was first introduced to it a few years after my liver transplant. I wish I had known about them prior to my transplant. Now I tell everyone I am very involved with their advocacy program and other programs that I can get involved with. They offer so much information to individuals about liver disease in general. For instance, every year we have a liver cancer conference. It is a webinar that we tape. There is clinical trial information. For instance, regarding liver cancer you can find out symptoms and how to treat them. Just about any question you could have about liver cancer or bile duct cancer, you can find answers on the American Liver Cancer site. You can see webinars and patient stories, what they have been through, it is just a remarkable organization. We are doing everything we can to spread the word about liver disease and try to get people aware that liver disease isn’t all that bad. There are cures, there are controls, there are things that we can do as individuals that can prevent someone from having to get a transplant. It is just a wonderful organization.
BM: We are to the point, Don, in which we are going to wrap things up, and we conclude our episodes the same way each time. Imagine if you encountered someone who had just been diagnosed with liver cancer, had a private audience with this person. There might be a lot of things you would want to say to this person, but if there is one point you really want to make, one that stands out above all others, what would it be?
DM: The thing I would people is you have got to stay positive. I know you are going through a hard time. I have been there. I have gotten through it and you have got to stay positive. Rely on your support people and don’t be afraid to ask questions. You have to be your own ambassador. No question is crazy to ask. You have to ask the questions that you want the answers to and be persistent enough to get the answers. You have to be your own person to empower yourself to get yourself through it. I did that and it was important to me.
BM: You have talked about being an ambassador for liver cancer, liver disease and you have shown that, Don, in the present and I suspect in the future, you will be an outstanding ambassador to the fight against liver disease and liver cancer, So, Don, we are going to wrap up now. We want to thank you very much for sharing your story, what you have done in the past, what you are doing and what you will do. Don, thanks very much for being with us on Cancer Interviews.
DM: Thank you very much, Bruce, for inviting me.
BM: We want to remind as we always do when we conclude, if you or a loved one are on a cancer journey. You are not alone. There are people out there like Don Melillo, organizations like the American Liver Foundation, that are ready to help. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
American Liver Foundation: www.liverfoundation.org
SHOW NOTES
TITLE: Don Melillo, Liver Cancer Survivor – West Chester, Ohio, USA
What began as stomach pains for Don Melillo became a 2012 diagnosis of liver cancer. To compound this bad news, Melillo was told his only life-saving option was that of a full liver transplant. He underwent the procedure, achieved survivorship and now leads an active lifestyle. This is his story.
Additional Resources:
Support Group:
American Liver Foundation: www.liverfoundation.org
Time Stamps:
02:20 Don’s cancer journey began with severe stomach pains.
03:42 He soon learned he had liver cancer.
05:35 His doctor explained treatment options.
08:08 Says a stigma is attached to those diagnosed with liver cancer.
10:03 Don says these days, there are more liver cancer treatment options than in 2012.
10:45 Reveals the toughest part of his transplant experience.
13:37 Shares when he felt his cancer journey was turning the corner.
14:39 Don describes life after his liver transplant.
21:00 Message for others diagnosed with liver cancer.
KEYWORDS (tags):
cancer
liver cancer
cancer interviews
hepatic artery
bruce morton
chemoembolization
don melillo
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