DESCRIPTION
Those diagnosed with mucosal melanoma, comprise about one percent of all melanoma diagnoses. For Chris White of Dallas, Texas, his journey began when he noticed a lump on his rectum. He thought it might be a pimple or a hemorrhoid, and didn’t think to do anything about it. An active snowboarder, Chris was on a chairlift when he felt an increased level of discomfort. Then he noticed an additional lump on his inner right groin, also a source of pain. When it continued to grow, he decided it was time to seek medical attention.
In May 2018, Chris went to his general physician who put him on an antibiotic, a ten-day regimen. When that didn’t work, the doctor prescribed a second antibiotic, which also did no good. The doctor then sent Chris to a general surgeon who originally thought Chris had a femoral hernia and scheduled surgery for July. When Chris woke up, he was told the procedure revealed not a hemorrhoid, but a lymph node. The doctor said it looked like cancer, but he would have to first see the lab results. The next day, Chris got the phone call he dreaded.
Stunned by this bad news, Chris White was told he needed to see a specialist. In Dallas, he decided to go to relatively-nearby Houston and world-renowned MD Anderson. Their initial option was immunotherapy, a form of targeted therapy, administered via IV. It is designed to use one’s immune system to attack the cancer. The specialist said the cancer’s staging had to be identified before a treatment plan could be devised. They started with a PET scan, then moved on to lymph node dissection surgery. He was put on anesthesia and dye was shot through his lymphatic system to determine the location of the cancer. They pulled lymph nodes out of his right and left groin and melanoma was also found in his rectum.
Chris had heard the word metastatic attached to his cancer, which was daunting. Further tests indicated his cancer had metastasized from Stage 3C to Stage 4 in his lungs and around his lymphatic system.
Going forward, Chris White’s treatment took place in both Dallas and Houston. The immunotherapy in Dallas, while scans and surgery and radiation took place at MD Anderson. This regimen left Chris in a great deal of pain. He ended up taking the maximum daily amount of hydrocodone he could take. Recent clinical trials of TIL therapy showed it could shrink tumors in patients with advanced melanoma, which Chris to be part of. However, before Chris could go on TIL therapy, he learned the cancer had spread to his brain, and as a result, he cold not qualify for the needed TIL. Doctors were able to stabilize the brain metastasis, and insurance paperwork.
Chris flew to Colorado in January 2020, went on a week of chemotherapy depletion, then got his TIL therapy. He had his first followup scan six weeks later, and it showed the TIL therapy was working. Throughout 2020, Chris periodically returned to Colorado for additional scans, and nine months after the TIL procedure, it showed a complete metabolic response. Then on January 3, 2021, a PET scan confirmed a 100 percent metabolic response, and Chris says that since then he has been scan-free.
Chris says physically he can do all the things he did prior to his diagnosis, including his beloved snowboarding.
In terms of advice, Chris White says if you are diagnosed with mucosal melanoma, it is aggressive, so you must be aggressive in how you address it. As such, you need to find a care team that will share your urgency.
Additional Resources:
Chris’ website: https://www.mucosalmelanomasurvivor.com
Chris’ book: Killing Cancer With TILs
TRANSCRIPTION
Bruce Morton: Battling cancer is tough enough. Battling a rare cancer is even tougher. When our guest discovered a lump on his rectum, he thought it might be just a pimple. However, doctors eventually told him it was a rare form of skin cancer. This is the story of Chris White of Dallas, Texas, and what he encountered when he learned he had mucosal melanoma. Now let’s hear that story, and Chris, welcome to the Cancer Interviews podcast.
Chris White: Thank you for having me, Bruce.
BM: Chris, it is our custom to start out by learning more about our guests. If you would, tell us a bit about your life away from cancer. Where are you from, what do you do for work, and what do you do for fun?
CW: Absolutely. I am actually from Colorado Springs. In 1988, I moved out to Southern California, I grew up in Orange County and in 1996, I moved to the Dallas, Texas area, just before my freshman year of high school. After graduation, I got my historical studies degree from the University of Texas at Dallas in 2005. I worked in the service industry at a private golf club for like the next ten years. In between then I also worked in the oil and gas industry. After 2016, I got into new home construction and was doing that until about 2022. For fun, I snowboard, I skateboard, I visit with my nieces and nephews. I do this for a living. I am an inspirational speaker. I travel around, telling my story, so that is what I am currently doing for a living.
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 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 when we release our next cancer 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 to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
Chris, all of us who are cancer survivors experienced that time when, physically, things seemed normal but changed to abnormal. For you, one with an active lifestyle, when did you first notice that things weren’t quite right?
CW: In the beginning of 2018, I noticed I had this little lump on my rectum. I didn’t do anything about it initially. I had heard about benign masses growing and moles in strange places and such, but it wasn’t painful, it didn’t bother me, and I didn’t do anything about it. Over the next couple of months, I recall snowboarding in March, sitting on a chairlift and thinking this was a little bit uncomfortable. Shortly after that I had an additional lump in my inner right groin, and that lump grew tremendously fast. That was when it finally clicked with me that I needed to get this looked at and see what was going on. That’s how it all got started.
BM: But you did decide to get this looked into, and when that happened, what happened?
CW: I initially went to my general physician around May 2018, and he gave me an antibiotic. It was a ten-day antibiotic. He said to take these and if there is no change, to come back and I would get a different one. I came back after ten days, said there was no change. He gave me another antibiotic and said if nothing changed to come back and he would have me sent to a general surgeon. After those ten days, I met with the general surgeon in June. He told me it might be a femoral hernia. He said it was extremely rare, but the only way to know was to do a surgery and find out. In that surgery, if it was a hernia, he’d repair it; if not, we would “go from there.” I ended up having my surgery on July 2, 2018. During that surgery, that is when he discovered it wasn’t a hernia; it was a lymph node. When I woke up, he told me about the lymph node and sent it to pathology. I had an appointment to see the proctologist to get the other lump looked at. That was on a Thursday of that week. The proctologist looked at it and immediately said it did not look like a hemorrhoid like I assumed it to be. That’s when he asked what was my pathology. My stomach sank, I said it hadn’t come back yet. That’s when he said, honestly, it looks like cancer, and that once I get the lab results to turn them over and we can go from there. Then the next day I got the call.
BM: With everyone, the equation is a bit different in terms of the severity of the diagnosis and the makeup of the patient, the equation is a bit different; but given the variables of your equation, what was your reaction?
CW: I was shocked, very much stunned. It was paralyzing because when they called me and told me that, yes, this is confirmed cancer, they said it was a metastatic form of malignant melanoma that is extremely rare. It is not skin cancer. They said I should make a phone call right away to see an oncologist. He said until I make my appointment to not research it or tell my family because it was going to call confusion and that they would have more questions than I have answers. I don’t recall researching it myself, but I did let my family know so I could have someone come with me. I was able to get an appointment for the following week. At that appointment they were able to tell me this was an extremely rare cancer, and they were trying to figure out exactly type it was. They told me I needed to see a specialist. MD Anderson was in Houston, I am in Dallas. The sense of urgency they had when I went in for that first appointment made me realize how extremely rare it is. Later on, I would come to find out that in makes up one percent of every melanoma, so for every skin cancer patient, there is only one of me. It was very humbling.
BM: Did you find that you had treatment options? Not all cancer diagnoses afford the patient treatment options. What about your case?
CW: There was no known cause for my cancer. When I got to MD Anderson, they had to reverse engineer or look at what has worked in other similar cases. The five-year survival rate is about 14 percent. They told me that the first thing we should do would be immunotherapy, which is a targeted therapy that is not a chemo or anything like that, but it is a treatment that is given to you via IV just like you would a chemotherapy treatment, but it doesn’t give you all the side effects. It is specifically designed to use your immune system to attack the cancer. By the time I got down to MD Anderson I had already gone through a second surgery. The specialist said once we identified staging, then we could move forward. I did a PET scan, and he said the first thing we should do is a lymph node dissection surgery. They put you on anesthesia, shoot the dye throughout the lymphatic system and it can show where the cancer has spread. They pulled some lymph nodes out of my right and left groin. There was a remainder of melanoma that was further up my rectum that they couldn’t see initially. They had these tubes sticking out of me and said the treatment options going forward would be targeted radiation and then a chemo plus immunotherapy or a combination of immunotherapies, chemotherapy, radiation or TIL therapy, but that is very specialized, and you have to qualify for it. But there were not any known treatments, and a lot of guesswork.
BM: Chris, you mentioned immunotherapy, chemotherapy, but a few minutes ago, you brought up a word that really struck a nerve for me: malignant. From the emotional piece of all this, how daunting was that, knowing that your cancer battle may not be confined to your rectum?
CW: That’s a very good question. I admit I didn’t know the meaning of the word malignant when they told me that, so I was oblivious, to be honest. The only thing I had known about cancer was just what I had learned from watching movies. I didn’t learn much about cancer until 2020, about a year after I concluded my treatment. Chemo, they told me from the get-go would be the last option on the list. It would be a bandaid. It would be something used to stabilize or to kind of keep it at bay, but chemotherapy was never going to cure this type of cancer, it was never going to go to remission. It was so aggressive that chemotherapy was a last-ditch choice. Immunotherapy was always the go-to. I was kind of ignorant, to be honest, I just went with the flow.
BM: Because this was a rare sort of cancer, there might be some innovative or creative ways of dealing with it. Was the prospect of something new and different, like a clinical trial, something that entered the equation?
CW: You know, it did, but since I got down to MD Anderson, the clinical trial that might have initially done would have been the one I eventually did do. At the time, though, I didn’t have visible metastasis anywhere, so in order to do the treatment I actually did, you have to have more than one tumor of a minimum size so they can extract and monitor the other. When I got down to MD Anderson, I had my primary tumor removed from my rectum, then my secondary tumor removed from my lymph node. It was that subsequent surgery that they pulled the remainder of the lymph nodes. So, the clinical trials that were going down there, were a mix of the immunotherapies with a chemo, or an immunotherapy with radiation, so that was considered a clinical trial. I actually did some of those as well, but the first time I went to go do my staging for that third surgery, I did a PET scan to find out where we are at, I was supposed to get a chemotherapy/immunotherapy clinic trial, but that’s when they discovered it had metastasized from Stage 3C to Stage 4 in my lungs and elsewhere around my lymphatic system.
BM: And how daunting was that to learn your cancer had spread to other parts of your body?
CW: I was even more shocked and that’s when it really hit home because when I went in for that meeting to go over my scans, I thought there might have been some cancer that was left over in my groin. I had seen some lumps that looked like sunflower seeds. I had done an ultrasound right before my meeting. I had confirmed that there was a little bit in my groin, so I was thinking to myself that maybe there is a little bit, we’ll attack this hard; so, when they told me it had spread everywhere, I was completely shocked. It threw me to the ground in a sense, but I was immediately able to pick myself back up and ask what was the plan, what are we going to do? I told them let’s not do this tomorrow, let’s do it today.
BM: You, Chris, are in the Dallas-Fort Worth metroplex. MD Anderson is a world class facility in relatively nearby Houston. Now that you have gone through this experience, now that you have been a public speaker and learned about the experiences of others, do you have a sensitivity for others who have been diagnosed with rare cancers, rare diseases, who are not geographically close to a source of care?
CW: The rarer it is, the harder it is to find both a facility that can treat it, a doctor that is familiar with it, let alone a patient that can advise you about it. All of that comes into consideration. When I was first looking up mucosal melanoma, there was almost nothing out there that was positive or anything. It was all out of date, and it was very grim. You really have to get into your recruiter type mindset of searching and tracking down where these facilities are at, but a lot of the barriers are that nobody’s talking about it and nobody’s going to hear about it. The internet has these algorithms and so it depends on what you are searching for, but there is only a handful of places that are actual specialists. There are now a lot of doctors that deal with melanoma, you can find them anywhere, but when it comes to specifics for mucosal melanoma, you don’t want to have somebody who is a jack of all trades and master of none, you want a master of one, you want somebody who specifically deals with it. So, you just start reaching for referrals. Some of these facilities require you do an initial consult in person. Some you can do online. You might have to do some local examinations. I was fortunate enough when I went down to MD Anderson, which is about a four-hour drive for me. I did all my systemic treatment, immunotherapy and such, here in Dallas. I would go down there and do my scans and did my surgery down there and my radiation down there. I was able to get my oncologists in Dallas and Houston to communicate, and that right there is one of the bigger challenges because not all doctors everywhere are familiar with this process and are open to doing it. There are insurance barriers if you are out of state. If insurance cannot figure out how to bill, then you cannot have a consult. Some people literally had to cross state lines so they can do a Zoom call from their phone to do a consult. Another barrier can be financially-related. Since these are specialists, insurance oftentimes can deny or delay coverage of what your oncologist is prescribing, so I always tell people to always do a peer review if there are any hang-ups on anything. When you are trying to get insurance approval, it is literally somebody sitting at a desk with a chart that is not familiar with your type of cancer and uses that lack of familiarity to deny coverage when the doctor says the procedure or medication deserves coverage.
BM: As we hear your story, Chris, you are sounding pretty upbeat so far, but it sounds like what you went through was so scary. What was the toughest part of the treatment as you look back?
CW: When I metastasized early on in my journey from Stage 3C to 4, shortly after that, I ended up having a lot of cancer-related pain. So, I was put on what I would later come to find is called a ‘comfort pack’ of pain medication. I would tell people to imagine how high they can fly when you feel like Superman, but I was on a fentanyl patch, I was on the maximum amount of hydrocodone you could take per day. I was pretty lit for the majority of the time I was going through everything. My whole mindset was, if I am going out, I am going out swinging. I didn’t want people to remember me as being all doom and gloom. I also got some energy from the pain meds, so I was ready to advocate for myself with a sense of urgency when it came to appointments, sense of urgency when it came to treatment. I was not willing to settle for wait and see, I was not willing to settle for waiting for tomorrow. I reminded myself I am the patient here. The doctor is working for me. I wasn’t going to let any kind of doctor’s ego get in the way of what I needed. This is my life. I was not going to sit down and let my care fall to the side into the hands of somebody else. It took about a year after I metastasized when I got into the clinical trial that did save my life. They extract the tumor, send it to a lab and they take that specific tumor for examination. You wait about two weeks to get it back. In the meantime, you go through chemo for about a week to bring your white cell count down to zero, so when they execute TIL therapy, it is like Pac-Man. It goes throughout your body, and it eats up all the cancer. Right after they give you the TIL, they give you interleukin, and they give you six doses. All told, it was a two-week deal on average, maybe more, but from sign-and-consent to your surgery for your extraction to waiting for your TIL, it is at least a month-long process. So, right before I actually entered the hospital for what turned out to be my third surgery, I was clinically declined. I thought I had a cold, so I went in to the doctor to ask if I could get a Z-pack or steroid shot or anything. They told me I was getting into a clinical trial, and they could not do anything for me. Under the clinical trial, there are very strict rules, and we cannot alter your system. I did my baseline scans and went in for my surgery and at that appointment, they told me I had a brain metastasis, so it kicked me out of the trial. Things were looking very grim. I was not looking good. They told me that to call hospice and settle my affairs might be a better option for me. This was in Dallas. They said that they had talked to the clinical trial coordinator in Colorado, where I was going for my clinical trial, and that the only way to get back into the trial was to stabilize the brain metastasis to show it to be stable or in reduction. The clinical trial was closing. It had an end date. They were not going to wait for me and hold the door. So, I had to make it into this trial, and the baseline scans were also on a timeline. They said I needed to do targeted radiation to the brain metastasis, but I had to get insurance approval. We started making the calls. I went ahead and had a visit with the radiologist. The radiologist said we have to do five sessions but couldn’t do it until they had insurance approval. I was told this information on December 10, 2019. It took six days to get my insurance approval. Right after that is when I got my mask made for the procedure and the following day, I got the radiation treatment. I got all five sessions completed. The very last day for me to get my scan was on December 24th, and I got scanned on Christmas Eve. Then I had to wait to get back to Colorado for my clinical trial appointment on January 3, 2020. Between that time, I was filling out my will and everything that goes along with that, and really trying to keep the vibes as positive as possible around Christmas time and believing that I was going to make it. I flew out to Colorado on January 2, and met with my oncologist the next day and she told me what was probably the best moment of my life ever, which was that the radiation had worked, the brain metastasis had been considered stabilized. I was admitted to the hospital on January 8, 2020. I did my week of chemo depletion, then got my TIL on January 15, 2020, and followed up with six doses of IL-2 and was let out of the hospital on January 20. I had my first followup scan six weeks later at the end of February. It showed that things were working. Throughout the year we continued to come in. It went from every six weeks to every three months. About nine months later, I ended up showing a complete metabolic response. Then on January 3, 2021, we did an additional PET scan to confirm 100 percent that I did have a metabolic response, and I have been scan-clear ever since.
BM: I want to turn this in a more positive direction and ask you if were physically 100 percent prior to your diagnosis, these days, how close are you to 100 percent?
CW: I have been 100 percent since that date I just mentioned to you, January 3, 2021.
BM: So, you are back out snowboarding now.
CW: Yes.
BM: Chris, I want to ask you about one more thing before we conclude. You have talked about public speaking engagements and such. If somebody wanted to go to the internet to find out more about what you do, where would they go?
CW: Absolutely. My website is www.mucosalmelanomasurvivor.com. My social media handles are @mucosalmelanoma or @mucolsalmelanomasurvivor.
BM: Excellent, Chris, and our final question is the final question we ask of all our survivor guests. If you encountered someone who had just been diagnosed with mucosal melanoma, you might have lots of things to say to them, but there was one point you wanted make sure you drove home to that person, what would it be?
CW: Sense of urgency. This cancer is extremely aggressive. Do not take it for granted. That mindset is your worst enemy, so be extremely aggressive with whoever you talk to. If they have that same sense of urgency, you are in the right place. If not, you need to go find somebody that is.
BM: Chris White, Dallas, Texas, thanks so much for sharing your story. Thanks for being with us on Cancer Interviews.
CW: Absolutely. Thanks for having me on. Appreciate it.
BM: And as we always do when wrapping up, we want to remind you that if you or a loved one are on a cancer journey, you are not alone. There are individuals like Chris, that have a great deal to say that can be informative and/or inspirational. So, until next time, we’ll see you on down the road.
Additional Resources:
Website: www.mucosalmelanomasurvivor.com
Chris’ Book: Killing Cancer With TILs
SHOW NOTES
Chris White: Mucosal Melanoma Survivor – Dallas, Texas, USA
When Chris White noticed a bump on his rectum, he thought it was nothing more than a pimple. Not only did the bump turn into a diagnosis of a rare type of skin cancer, but the cancer metastasized to his brain. In addition, to get the treatment he needed, Chris faced barriers from his insurance carrier and the windows for the much-need clinical trial, but he overcame everything in his path. He has resumed snowboarding and skateboarding and travels the country as an inspirational speaker.
Additional Resources:
Support Group: www.mucosalmelanomasurvivor.com
Chris’ Book: Killing Cancer With TILs
Time Stamps:
03:30 Chris noticed a bump on his rectum.
05:37 A surgical procedure revealed a lymph node, which led to his diagnosis.
09:40 Went on an immunotherapy regimen.
10:45 Lymph nodes were removed from his groin.
13:30 Chris considered participation in a clinical trial.
15:05 Learned his cancer had metastasized.
16:40 Challenges faced by those diagnosed with rare cancers.
20:37 The toughest part of his treatment.
22:20 Chris describes the clinical trial procedure.
24:00 Discovery of cancer spreading to his brain.
26:33 After being told to fill out his will, Chris got fantastic news.
28:03 His health has been at pre-diagnosis levels since his metabolic response was confirmed.
KEYWORDS (tags):
cancer
mucosal melanoma
cancer interviews
skin cancer
bruce morton
immunotherapy
chris white
radiation treatment
chemotherapy
TIL therapy
targeted therapy
chemo depletion
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