In this episode of the Cancer Interviews podcast, host Bruce Morton hears from Melinda Bachini, who survived cholangiocarcinoma, a form of bile duct cancer. Doctors removed two thirds of her liver, but three months later, the cancer returned, and she was put on a chemotherapy regimen of gemcitabine and cisplatin. The chemotherapy had terrible side effects, and Melinda fought to get on a clinical trial of tumor infiltrating lymphocyte therapy. The clinical trial led to survivorship.
A paramedic from Billings, Montana, in 2010, Melinda began to experience shoulder pain and upper gastric pain. At first, she thought those were tied to the rigors of her job, but when the pain got worse, she sought medical attention and underwent a CT scan and an MRI. That led to a biopsy, which confirmed Melinda had cancer, but doctors could not immediately determined what type of cancer it was. Three weeks after her diagnosis, they concluded it was cholangiocarcinoma. Melinda said for many diagnosed with bile duct cancer, the cancer spreads from the liver. In her case, the cancer was confined to her liver, and she underwent surgery to have two-thirds of her liver removed. After the procedure, doctors confirmed the cancer was cholangiocarcinoma.
There is a high rate of recurrence for cholangiocarcinoma. Three months after Melinda’s surgery, a post-operative checkup revealed there were signs of tumors in her lungs, so the cancer had spread. That’s when for the first time she had heard the words, “Stage IV terminal.” At age 41 and the mother of six, she wasn’t ready to give up. The cancer soon spread from her lungs back to her liver, so doctors put her on another chemotherapy regimen, this time with a drug called taxotere. That didn’t work, either, so Melinda was ready to stop the chemotherapy because of its nasty side effects and just to live as long as she could.
Melinda had learned of a clinical trial at the National Cancer Institute, applied to be accepted in the trial and was accepted. Because the Maryland-based NCI is federally-funded, it covers all related expenses. The trial was called GI-TIL, which stands for Tumor Infiltrating Lymphocite therapy. She was the ninth person to enter into this type of trial and the first with cholangiocarcinoma.
As Melinda Bachini began the trial, she had tumors on both lungs and her liver, and figured she probably had only a few months to live. However, not long after the trial began, she thought it was working because a cough she had had, went away. She was in the hospital three to four weeks and she said it was an aggressive treatment. She said they surgically pull tumors. She said they grow T-cells into the billions, then put them back into her to fight the cancer. Melinda returned about 18 months later, and doctors had pinpointed which type of T-cells could best attack the cancer. The cancer started growing again, but the continued combination of GI-TIL therapy and a drug called pembrolizumab, kept the cancer at bay, and her final treatment was in March 2017.
Melinda has gone on to work to help others diagnosed with this rare cancer. She began as a volunteer with the Utah-based Cholangiocarcinoma Foundation, and is now its Chief Patient Officer.
Additional Resources:
The Cholangiocarcinoma Foundation: https://www.cholangiocarcinoma.org
TRANSCRIPT
Melinda Bachini…
Bruce Morton: This is the Cancer Interviews podcast, and I’m your host, Bruce Morton. We don’t hear much about bile duct cancer. It doesn’t get the attention of other types of cancer. But our guest on this episode has survived a form of bile duct cancer and devotes her energy these days to helping with those with similar diagnoses. She is Melinda Bachini of Billings, Montana. In addition to her story, she has lots of timely information. Here she is, and Melinda, welcome to Cancer Interviews.
Melinda Bachini: Bruce, I am so happy to be here and thank you for having me.
BM: Before we get into your cancer journey, Melinda, we would like to learn more about your life outside of cancer. So, if you would, tell us about where you are from, what you do for fun.
MB: I am Melinda Bachini from Billings, Montana. I am a Stage IV survivor of cholangiocarcinoma and the Chief Patient Officer with the Chlolangiocarcinoma Foundation. What do I do for fun? Being from Montana, I do a lot of things. We do a lot of outdoor activities. We have a boat, we do water skiing, we snow ski, snowmobile, anything outdoors.
BM: Because we don’t know a lot about bile duct cancer, before we get started on your cancer journey, tell us about how some symptoms that should let someone know that these could be symptoms of bile duct cancer.
MB: One of the tricky things about bile duct cancer is that a lot of the symptoms can be passed off to more common symptoms. It is one of those cancers that gets diagnosed late because it is a silent cancer. It grows and grows and then all of a sudden, the symptoms are there and then it is diagnosed in a late stage. Some things to look for would be jaundice, the yellowing of the skin, the yellowing of the eyes that would mean there could be a bile duct blockage. Because of jaundice you will have itchy skin, so some people will think they have an allergy or reaction to something when they are scratching their skin and that could be a buildup of bilirubin. When the bilirubin is increased and the bile duct gets blocked, your stools can turn white, clay-colored and your urine can turn really dark. There are also a lot of reports of abdominal pain, and a lot of times the liver will defer pain to the back or to the shoulders. We also hear about heartburn and any kind of GI upset that could be signs and symptoms of bile duct cancer; but the big ones are jaundice and the lack appetite, the fatigue, and those are what usually get people to the doctors.
BM: Melinda, with one of the other cancers we deal with on our interviews, lung cancer, a difficult part of the lung cancer equation is that people are proactive about trying to get screened, they can’t get screened, then when they are diagnosed it is Stage III or Stage IV. For bile duct cancer, is it also difficult for one to get screened?
MB: No, at this time there are no screening diagnostic tests for bile duct cancer. We are hoping that will change further down the road. We hope there will be more research to diagnose these patients earlier because the earlier diagnosis, the greater chance for a good prognosis, but we are not there yet.
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 please give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the Subscribe button below and click on the bell icon, so you’ll be notified the next time we post an interview. And if you or a loved one are facing a cancer diagnosis, please click on the link in the Description and Show Notes below and check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
BM: For all of us who have survived cancer, there was that point in time when we noticed some outside our health that didn’t seem right. Whatever the problem, it eventually led to a diagnosis of cancer. Melinda, for you, what was the issue, and what was the chain of events that led to a diagnosis? Were any of the symptoms in line with the symptoms you just mentioned?
MB: No. I worked as a paramedic when I was first diagnosed. I had a lot of right shoulder pain, but I carried my equipment on my right shoulder, so I thought I was just getting old and it just starting to hurt my shoulder more, and I was really fatigued a lot; but I worked 24-hour shifts, so I thought my shoulder and my fatigue was just part of my job. Then I started getting some upper gastric pain and some GI symptoms. I happened to have been out of town at a conference with a bunch of doctors and was eating out for breakfast and lunch and started experiencing a lot of pain. A doctor said he thought I had gall stones. That made perfect sense to me because my mom and my sister had had them. So, I laid off the greasy food for a while. The symptoms subsided a bit, but thankfully when I went to my primary care doc, I mentioned that to him and he ordered an ultrasound, which found a large mass in my liver.
BM: And what happened next?
MB: Things spiraled really fast. I went in for a CT scan, and an MRI. They were really hoping it was a benign hemangioma, which women get quite often. But they did a couple of tests, a red blood cell study proved it wasn’t a hemangioma, so they ordered a biopsy. I remember that biopsy was done the day before Thanksgiving weekend, and it was so hard to wait through that weekend. I received a phone call the next Monday or Tuesday morning confirming that it was cancer, but they weren’t sure what kind of cancer. They ran all sorts of tests. I was scanned from my head to my toes looking for a primary because a lot of times, the biopsy sample is inconclusive. They sent it off to the Mayo Clinic. Initially I was diagnosed with unknown primary, which is quite common for bilirubin cancer patients as well. I was fortunate enough to be able to have surgery. With many bile duct cancer patients, the cancer has spread from the liver, but mine was confined to the liver. So, three weeks after my diagnosis they later assumed would be cholangiocarcinoma, I was able to have two-thirds of my liver removed. Post-surgery, they confirmed it was cholangiocarcinoma. Unfortunately, that wasn’t the end of my story.
BM: Melinda, I have a two-part question. First of all, how does cholangiocarcinoma differentiate itself from other types of bile duct cancer?
MB: Cholangiocarcinoma is a form of bile duct cancer. There is intrahepatic cholangiocarcinoma. That’s when the cancer begins in the bile ducts inside the liver. Then there’s extrahepatic cholangiocarcinoma, when the cancer originates in the bile that’s outside the liver and there are gall bladders cancers, which are a form of bilirubin cancer as well. All of those groups together make bile duct cancers. Bile duct cancer is just a lot easier to say than cholangiocarcinoma.
BM: And yet, cholangiocarcinoma, as you have learned, merits its own level of attention, which you have learned through the Cholangiocarcinoma Foundation, which we will get to; but the other thing I wanted to ask you is that the command center for this sort of thing is the liver. So, how does cholangiocarcinoma differentiate itself from liver cancer?
MB: Because cholangiocarcinoma originates in the cells of bile ducts, and that separates itself from primary liver cancer, which originates in the hepatocytes, the liver cells. We do see cases of mixed cholangiocarcinoma. It’s rare, but it does happen.
BM: When speaking to other people who have been diagnosed with rare cancers, even if the rare cancers are different, there is this connective tissue, namely that it is important to be seen by a specialist in that rare cancer, not some jack-of-all-trades doctor. Another two-part question: How important is it to find a specialist?
MB: It is so important to find a specialist. Again, I am from Montana. There are not a lot of cholangiocarcinoma specialists in Montana. You need to find somebody when you are diagnosed, somebody who sees a high volume of cholangiocarcinoma patients. The majority of cholangiocarcinoma patients are diagnosed in a community settings; we want to these patients to be seen by a specialist who has seen bile duct cancer patients and understands the research in this area and understands the importance of biomarker testing and a treatment pathway, but mostly the importance of clinical trials in this disease area because it is a rare cancer, we need to participate in clinical trials that help improve the treatment options to help improve the prognosis of this disease.
BM: The second part of my two-part question is, here you are in Billings, the largest city in Montana, and yet I am thinking it may be difficult for you to find the kind of specialist you have referenced. How hard is it, from where you are, to locate the specialist you need?
MB: I did end up traveling. Again, I worked as a paramedic, so I felt pretty comfortable with the medical team here, but I did get a second opinion at the Mayo Clinic in Minnesota. For personal reasons, I chose to stay home and have the surgery here. Unfortunately, the cancer returned three months after the surgery. Again, I sought a second opinion at the Mayo Clinic for treatment to see if they had any clinical trials to offer. Ultimately, I ended up doing a clinical trial at the National Cancer Institute in Bethesda, Maryland, so I did do some traveling, which was not an easy feat from Montana.
BM: I suspect not, but it sounds like you felt you were in good hands with the people who treated you for the first diagnosis and the second diagnosis. You had mentioned the surgery. In terms of the entire package, what was the toughest part?
MB: There is a high recurrence rate for this kind of surgery, so after surgery, you feel a sigh of relief. After my first surgery post-operative checkup, there were signs of tumors in my lungs, so the cancer had spread. When we confirmed that it had metastasized to my lungs, that was the first time I had heard, “Stage IV terminal,” and at 41 years old and the mother of six, I definitely wasn’t okay with that. I had done enough research to know that if we wanted to find a way to beat this, we had to find something new. So, I was really interested in being part of a clinical trial. I asked my local oncologist if he would be proactive and aggressive about seeking a clinical trial, which he did, and he found one, but in 2010, my insurance would not cover the standard of care to participate in a clinical trial. I didn’t know that option could be taken away from me. Because I didn’t want to put my family in financial distress, I chose not to enter that clinical trial and I went on the standard of care chemotherapy. That was my first taste of being a patient advocate. I went with a couple of other cancer patients to the state capital in Montana and told our stories and we were able to get a law passed that said insurance companies in Montana had to cover the standard of care costs so that patients could enroll in clinical trials, if they chose to. That was the first time I realized that if I share my story it might make a difference.
BM: Let’s talk about your chemotherapy. What sort of cocktail were you put on as part of this regimen?
MB: The first go-round was gemcitabine and cysplatin. I was one of those patients who probably experienced every kind of side effect one can experience. I definitely didn’t agree with chemo. Not many people do. I was able to stay on that regimen for about six months until the toxicity built up. Then they took the cisplatin away and left me on the gemcitabine alone, which didn’t do a whole lot for me, either. The cancer spread from my lungs back to my liver. At that time, they tried a drug called taxotere. There really wasn’t anything out there for cancer patients at that time. There was just the gemcitabine and cisplatin, and it was palliative treatment only. They tried that, and that didn’t do a whole lot, either. It was at that time, almost two years into my diagnosis that I chose to stop all forms of treatment because my quality of life was not very good and I wanted whatever time I had left with my family to be better quality, even though it was the hardest decision I ever made. Fortunately, three weeks later, I stumbled across a clinical trial at the National Cancer Institute. I read it, it had initial chemo to clean out your immune system, but after that it was your immune system doing the work. I just remember looking at my husband and saying we should give this a try. If it had been a clinical trial with other chemotherapies, I would not have done it because I was done with chemo at that time. So, we did all the work. We called out there, we enrolled, we were accepted into the trial, and the great thing about the National Cancer Institute is because it is a federally-funded facility, they cover all the expenses if you enroll in a clinical trial, which made it financially affordable for my family to participate in this trial. It covered all the medical costs and my travel, which made all the difference in the world.
BM: Melinda, we have listeners and viewers who would like to know more about that clinical trial in case they reach that point in their journey. Is there a specific name for that clinical trial?
MB: At the time I entered in, it was called the GI-TIL trial, which stands for Tumor Infiltrating Lymphocite therapy, and now they are doing this work in many different institutions for all different types of cancers. I happen to be the ninth person to enter into this type of trial, the first one with cholangiocarcinoma and the first one to have a response, so it was pretty incredible. I had tumors all over both lungs and all over my liver when I entered this trial and I know that I probably only had a few months left to live. I knew right away that it was working because my cough went away. I had a three-to-four-week stay in the hospital and it was a pretty aggressive treatment. First, they do surgery and pull tumors. Then they grow the T-cells into the billions, then put the T-cells back into you to fight the cancer. At the end of that first treatment, I could tell the cough went away. Then I had a good response for about six months, then the cancer stayed stable and then it started growing again. However, in that 18-month timeframe, the research scientists that were studying my T-cells were able to pinpoint those T-cells that were reactive to one of my mutations for my cancer, and they were able to treat me again with a more personalized group of T-cells to attack the cancer. So, I went back a second time about a year and a half later and had an even bigger response. Tumors were shrinking really well for three years. No other treatment, great quality of life, things were good, and then it started growing again. Unfortunately, cancer thinks it is smart and threw out a protein to try to block that immune system from recognizing the cancer. So, they gave me a drug called pembrolizumab, and after two doses it allowed those T-cells to recognize the cancer again. I only had a total of eight doses and that was the last treatment I ever had, and that was March 2017. So far, so good, and my immune system is keeping the cancer at bay.
BM: And how exciting is that point at a time in which your care team was including the word “palliative” with your regimen. How exciting was it to get to this point?
MB: It was so exciting. I truly do feel like a miracle happened. I absolutely remember when I was diagnosed, asking God to let me hang on for five years so I could so my kids get a little bit older, to have hit that five-year mark and begging God to let me be a grandma, and now I am a grandma twice over and twins on the way. I just wake up every day being so grateful and fortunate and blessed, and that’s why it is so important to me to be able to share my story, educate about clinical trials, bring awareness to cholangiocarcinoma and help patients navigate this diagnosis.
BM: Well, Melinda, that is a perfect segue into the next subject we want to address, and that’s your involvement with The Cholangiocarcinoma Foundation. Would you tell us how all that started?
MB: The Foundation was started in Salt Lake City by Stacy Lindsay. She had lost her 38-year-old brother to cholangiocarcinoma. When he was diagnosed, he was in good health. It was a big shock for their family. They did a lot of work looking for resources because there just weren’t resources. Her brother, Mark, said he knew he wasn’t going to make it, but he wanted them to start this foundation for the patients that came after him. So, they founded the Foundation in 2006. I was diagnosed in 2009, and stumbled across the Foundation, and they had a discussion board online. I was able to connect with patients and caregivers back then and ask questions. It was an invaluable resource for me after I was diagnosed. After I went through my cell treatments, I started volunteering with the Foundation as a moderator on the discussion board, interacting with patients and caregivers. Then I became a patient advocate as a volunteer and volunteered for about two or three years before coming on as a fulltime Patient Advocate and leading the advocacy group. I am now the Chief Patient Officer with the Foundation and I have the privilege of speaking on many national panels. For me, I just want to bring the patient voice to the table where it is important so that the cholangiocarcinoma patents’s voice is heard when it comes to designing clinical trials or fundraising for clinical trials and do whatever I can in that way, but the best part of my job is that I get to speak every day with patients and caregivers and help them find the support and tools and resources they need so they can advocate for themselves after this diagnosis.
BM: We have heard about your foundation, Melinda, and if somebody watching or listening would like to find out more about it, what is its web address?
MB: The web address is https://www.cholangiocarcinoma.org.
BM: And if somebody goes to the website, what are some of the services it can provide?
MB: There are all sorts of services. We have a specialist map to help that second opinion. We can help search for clinical trials. We can give you information on the importance of biomarker testing. We can connect you to virtual support groups. There is a nutrition resource. There are questions to ask at your doctor’s appointment. There is information for providers and professionals as well. We have an international cholangiocarcinoma research network. All sorts of information is there, so please check it out.
BM: Wonderful. We are going to conclude now, Melinda, and we will conclude with the question we ask of just about all of our guests. If you encountered somebody one-on-one, someone freshly diagnosed with cholangiocarcinoma, if there were one thing you really wanted to impart to this person, what would it be?
MB: Just don’t lose hope. There is more research being done than has ever been done before regarding this disease, just don’t lose hope.
BM: Outstanding. Melinda Bachini, Billings, Montana, thanks so much for sharing a lot of information about a disease that doesn’t get a lot of attention, bile duct cancer. Thanks so much for being with us on Cancer Interviews.
MB: Thank you so much for having me. I appreciate it.
BM: This will wrap this episode of Cancer Interviews. We want to remind you as we always do, that if you or loved one are on a cancer journey, you are not alone. There are people out there like Melinda and organizations like the Cholangocarcinoma Foundation that are there to help. So, until next time, we’ll see you on down the road.
Additional Resources:
The Cholangiocarcinoma Foundation: https://www.cholangiocarcinomafoundation.org
SHOW NOTES
TITLE: Melinda Bachini, Bile Duct Cancer Survivor – Billings, Montana, USA
An ultrasound revealed a large mass in Melinda Bachini’s liver, and that led to a diagnosis of cholangiocarcinoma, a form of bile duct cancer. Doctors removed two thirds of her liver. Unfortunately, her cancer returned three months. Melinda was hoping to take part in a clinical trial, but when insurance wouldn’t cover a clinical trial, settled for a chemotherapy regimen. When the chemo didn’t help but left her with a bunch of awful side effects, she decided to end the chemotherapy treatment and live as long as she could. Then she and her husband found out about another opportunity for a clinical trial, pursued it, qualified for it. The trial led to her achieving survivorship.
Additional Resources:
The Cholangiocarcinoma Foundation: https://www.cholangiocarcinomafoundation.org
Time Stamps:
02:24 Melinda names the symptoms of bile duct cancer.
04:02 One cannot get screened for bile duct cancer.
05:20 Her journey began with right shoulder pain.
06:22 Recalls what happened when an ultrasound revealed a large mass in her liver that led to a cancer diagnosis.
07:52 Describes post-diagnosis surgery to remove two thirds of her liver.
10:15 Melinda discusses the importance of finding a specialist to treat a rare cancer.
11:25 It’s not easy to find a cholangiocarcinoma specialist.
14:06 Names the meds on her chemo regimen.
15:49 Pursued a clinical trial as an alternative to chemotherapy.
17:33 Melinda describes her clinical trial regimen.
19:12 Recalls the excitement of achieving survivorship.
KEYWORDS (tags):
bilirubin
hemangioma
cholangiocarcinoma
intrahepatic cholangiocarcinoma
extrahepatic cholangiocarcinoma
hepatocytes
gemcitabine
melinda bachini
cisplatin
taxotere
bruce morton
tumor infiltrating lymphocyte therapy
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