[00:00:00] Speaker A: Foreign.
[00:00:08] Speaker B: My name is Nancy Farrow, also known as Mama Lu, and I'm the founder of Epic Experience.
Epic Experience mission is to empower adult cancer survivors and thrivers to live beyond cancer.
I hope that as you listen to campfires of Hope Living Beyond Cancer, you find hope, healing and empowerment.
Through stories and education, we aim to guide those impacted by cancer and more importantly, offer love and support to anyone out there who needs it.
This is beyond Cancer.
Hello everyone.
This is Gail, AKA Sunshine. Today we have Dane Thorpe joining us around the campfire and he's going to share his story about being a cancer survivor slash thriver. So, so Dane, thank you so much for being with us.
[00:01:28] Speaker A: Oh, thank you for having me.
[00:01:30] Speaker B: So please start by telling us a little bit about yourself, where you're from, career, family, all that kind of stuff. And then if you can include one fun fact.
[00:01:39] Speaker A: All right, so I'm from San Diego, California. I, I grew up out here. I moved the east coast for a little bit and realized I don't really like leather and unfortunately weather seemingly followed me after I came back and now we're hot and humid again.
I got married in 17 and have two kids now. My, my first was born on September 9, 2019. That'll become relevant later.
And I. One fun fact about me. Let's see, throughout my 20s and early 30s, before kids, I, I used to travel up and down Baja and go fishing in like ever towns that no one's ever heard of and.
[00:02:20] Speaker B: Oh, awesome.
[00:02:21] Speaker A: It's, it's my, my hobby of choice is going fishing but now that I have kids I can't do that anymore to the same degree.
[00:02:30] Speaker B: Well, and yeah, living where you do, going to Baja is, is not a huge trek. I mean it's 45 minute drive, man. Awesome.
So I'm curious how you got connected with Epic Experience if you can tell us that story.
[00:02:44] Speaker A: Absolutely.
So I own limousine company and that
[00:02:49] Speaker B: could have been your fun fact. Also
[00:02:53] Speaker A: don't think stretch limo here. Think Black cars, blacks, SUVs, things like that.
At any rate, so I own limousine company and have a bunch of vehicles and one of my customers is Lucid Diagnostics. Now they, and I'm friends at this point now with a gentleman named Sean and he does a lot of organization for them.
I believe he's a CEO, coo. Don't hold me to that. And at any rate, so he scheduled me to drive everyone to him from the event they had down in Coronado and that South San Diego. At any rate, one of those people was Denny and he and I talked about his treatment, then my treatment, and that's. That's how I came to know about Ethnic Adventure. Yeah.
[00:03:42] Speaker B: Awesome. I love it.
Well, again, the connection being cancer. Right. Lucid diagnosis, diagnostics. You talked to Denny, AKA Stretch, about his. So I'd like to hear more about your diagnosis story when, how you were diagnosed, a little bit about your surgery and treatment, that whole thing.
[00:04:02] Speaker A: Sure. So I made note of when my daughter was born in September 9, 2019.
December of 2018. I noticed a bump on the top of my lip. And I. With Nela Nolma, it's typically accompanied with mole discoloration. Some. Something that's obvious.
I didn't see anything. And it's kind of funny and sad simultaneously. But I convinced myself that I had a cyst, thanks to watching a TV show called Dr. Temple Potter.
And I know I. I sat up late one night, couldn't stop watching. And the thumb hadn't gone away in three weeks. And eventually I went in. Doctor looks at me and says, you know what? I think you're right. We're gonna have the head and neck take it out.
Three months later, head and neck looks at it, head and neck says, you know, we can take this out, but honestly, maxiofacial should do this. So that way it's from the inside and we don't leave the scar.
So that's doctor number two. That's looked at it.
Three months later, head and neck. Excuse me. Maxia facial comes in and does biopsy, takes the tissue out, declares it a mucosal cell cluster at the time. That's June 10th of 2019. So three months before my daughter was born.
[00:05:16] Speaker B: A mucosal cell cluster being cancer or not?
[00:05:19] Speaker A: No, not being cancer. I'm sorry. That is when your saliva cells clog up in the tissue and they can't excrete saliva into your mouth. Okay.
And that's what he said at the time. Three days later, June 13, he calls me and he says, well, congrats. You're. You're like my third diagnosis of mucosal melanoma in 30 years.
And, wow. It's. It. Unfortunately, it's a very rare cancer.
It's around a thousand cases a year diagnosed in the United States, and it does not have good prognosis upon diagnosis, let alone if you get to stage four.
So that's how I found out. And point. Point of that is, is that happened two months before my daughter was born.
[00:06:05] Speaker B: And you started treatment after she was born. Did you do treatment, or did they just take it out?
[00:06:11] Speaker A: So immediately they did two excisions. The first excision to cut it out was positive margins.
And I have a condition called perineural invasion, which means that the tumor had decided it was going to grow along with nerve. In my case, it's a trigeminal nerve that goes all the way through your skull and, well, it goes through your jawbone. Excuse me. Eventually it does go through your skull into your brainstem, which is not a great location.
[00:06:38] Speaker B: No.
[00:06:39] Speaker A: And, yeah, that's. So two surgeries, positive margins in both. And then I started standard of care, where I began doing keytruda, the standard immunotherapy for melanomas.
And immediately after the surgeries, I forgot to add that I did do a form of radiation called brachytherapy, which is a very intense, not enjoyable form of radiation.
[00:07:05] Speaker B: Oh, gosh.
And when did all of that finish in terms of surgeries, treatment? Everything.
[00:07:11] Speaker A: Everything I just described was around June. No, July 25th of 19 until, like September 30th, give or take. I'm close.
[00:07:23] Speaker B: And in that September period, you have a newborn.
[00:07:26] Speaker A: Yes.
[00:07:26] Speaker B: And this was your first or second? I'm sorry?
[00:07:28] Speaker A: First. That's my first.
[00:07:30] Speaker B: Wow. Yeah.
[00:07:32] Speaker A: My wife. My wife was eight months pregnant when I was diagnosed.
[00:07:35] Speaker B: Oh, gosh.
Yeah. I'm sure. I'm going to jump ahead and ask you what.
How did that impact parenting, your relationship with your wife? I mean, that. That's huge.
[00:07:49] Speaker A: It is.
Don't misjudge. My wife is wonderful. I love her very much. Nothing about that's changed.
There were moments in time when we hated each other.
[00:08:04] Speaker B: This is marriage. Right.
[00:08:08] Speaker A: Love them. But at the moment where I'm gonna say it's different is it's not because we hated each other. It's because both of us had this incredible anger.
[00:08:20] Speaker B: Yeah.
[00:08:20] Speaker A: That we had no direction for, like.
[00:08:23] Speaker B: Yeah.
[00:08:23] Speaker A: What do you do with that as young parents and I.
Yeah, yeah. I don't know how to describe it. Like, no, it was tough. We had wonderful moments and terrible moments. We didn't go anywhere. Obviously, time wise, it was right in the midd Covid.
[00:08:40] Speaker B: Oh, gosh. That's right. I didn't even make that connection. Oh, my Lord.
[00:08:44] Speaker A: So we couldn't go anywhere. We couldn't do anything. I wasn't allowed to go anywhere because I was being treated for a rare cancer. And so they're like, yeah, you can't go anywhere. I could go to the hospital at will. They take me there.
[00:08:56] Speaker B: Right. But that was it.
[00:08:59] Speaker A: That was it.
[00:08:59] Speaker B: So when was your second child born?
[00:09:02] Speaker A: Was after. After I was cleared of cancer after you were cleared.
[00:09:06] Speaker B: After Covid. The worst part of it.
[00:09:09] Speaker A: So the answer. The answer to your question is January 23rd.
[00:09:13] Speaker B: Okay.
[00:09:14] Speaker A: So after. She was. After everything.
[00:09:17] Speaker B: Okay. Wow.
[00:09:18] Speaker A: I cleared the cancer at that point entirely.
[00:09:20] Speaker B: Okay.
So your journey sounds convoluted and. And lots of steps and lots of uncomfortable procedures and all of the things. It also included multiple treatments and clinical trials. And I'm wondering what it was like navigating that.
[00:09:36] Speaker A: Okay.
[00:09:36] Speaker B: That uncertainty, you know, when you're trying to find answers. Because you said it was so rare. A thousand people in the US total a year annually.
[00:09:46] Speaker A: Yeah.
[00:09:47] Speaker B: So for. Let me ask that question first. So what was it like navigating that uncertainty, given all of that rarity?
[00:09:54] Speaker A: I'm gonna back it up slightly only to give you a better perspective of what I had to do to get there, because it's kind of important to your question.
So my initial oncologist. I was with Kaiser at the time. My initial oncologist, very nice guy. Unfortunately, he was getting ready to retire and. Yeah. So I.
Long story short, he had very big technical issues with using email and contacting me routinely. I know sounds silly, but it annoyed me enough that I ended up firing him and I moved on to a new oncologist. And to a point that it was. That was how it got me to a place where I could get treated for the. Answer your question.
So there. It also simultaneously gave me the ability to double dip because they accidentally sent an authorization for two different outside oncologists at the same time.
So I. I had nothing to do with that, to be fair.
But it gave me two people. It gave me Dr. Omid Hamid at the Angeles Clinic and It gave me Dr. Daniels at UCSD and the two of them coordinated together. And I asked to go to UCSD because I got sick of driving to LA because it's a two and a half hour drive.
And eventually Dr. Hamid referenced one trial in particular.
Now, I asked to go to UCSD because I found a trial. I forget the website, but it's the government website.
[00:11:26] Speaker B: Yeah.
[00:11:27] Speaker A: And it was a trial for tumor. Tumor infiltrating lymphocytes, tills and short.
And unfortunately, treatment didn't work. A couple of them didn't work, but it got me to the person and the people that they found something that did.
[00:11:42] Speaker B: Okay.
[00:11:43] Speaker A: I did not find the trial that worked. The doctor on midhome did.
[00:11:48] Speaker B: That's great. I mean, to have people in your corner searching, find, you know, not giving out and looking and. Well, yourself included. Yeah, yeah.
What was the Physical and emotional impact of that whole period of looking for trials, going through them that don't work, finding one that actually is working, it seems like, at this point.
[00:12:11] Speaker A: So before you get to the one that works, because that was real rapid, and there's some guilt in that, I want to be clear.
[00:12:19] Speaker B: The.
[00:12:20] Speaker A: The ones that didn't work. I'll answer that first. And that one.
The.
The first one was tills. Tills is when they take a portion of the tissue out and they try to. They extract your white blood cells and they try to grow it in the lab. Unfortunately, my. I did the surgery. They took the tissue out, but the cells didn't grow in blood. So I was kicked off trial because there was nothing to treat me with. So it is what it is.
The second one was a treatment called Interleukin 2. I have to be careful because the number is so close.
Interleukin 2 in combination with it was either penro or amiibo. I can't remember, but it's an immunotherapy. Same thing.
And so that treatment was horrifically awful.
It is debilitating. You're in the ICU for a week for treatment. Oh, yeah.
[00:13:10] Speaker B: Oh, gosh.
[00:13:11] Speaker A: And you go to tolerance. And I learned that word tolerance is something you never, ever, ever want to hear in medicine.
[00:13:17] Speaker B: No.
Yeah, I can. I can imagine that. That's not tolerance.
[00:13:23] Speaker A: In short, tolerance means the next dose kills you.
[00:13:26] Speaker B: I was gonna say that's insurance.
[00:13:30] Speaker A: So you go to tolerance. I did that twice. And I. I literally, like, I remember getting home from that one. Actually, the first time, I don't even remember getting home in two days. Afterward, I ended up back in the ICU at Kaise.
That. I don't remember any of that. Have very little memory of any of that treatment. I just remember being, like, absolutely debilitated, exhausted, Unlike. Cannot move, cannot do anything. Sitting on my couch with my two and a half year old at the time running around. And I'm sitting there like, how am I supposed to watch her? And I can't even stand up.
[00:14:03] Speaker B: Yeah.
[00:14:03] Speaker A: And like, that's the kind of stuff that I was fighting with at that point. Then onto the one that did work was IL12. That's why I have to be careful on the numbers.
So IL12, it was.
I. I'm terrible at describing this because it was a trial, and they don't have drug names for a lot of this stuff.
[00:14:21] Speaker B: Right.
[00:14:22] Speaker A: So the technical name of IL12 was medi 1191. Off the top of my head.
[00:14:28] Speaker B: Oh, my God.
[00:14:29] Speaker A: Don't hold me to that. Yeah, I don't think I'd remember at any rate.
So the trial itself was a direct injection into the tumor with treatment and, and then 30 minutes later it was. They gave me an enough immunotherapy and there are a bunch of other things that I had to do that I didn't really want to do. But that's part of trials.
But yeah, that day one, I got the treatment and day two I looked in the mirror and at that point I had a tumor. I had a fishial which was just a hole on your face, or in my case it was my face. There's a hole somewhere. I had a fistula and the tumor had grown through the fistula. And well, long story short, I looked in the mirror on day two and the tumor on my chin that was sticking out, it literally visibly shrunk by like 10 to 15% overnight. And I, I wasn't, I wasn't positive of that at that moment time. Like did that happen or not? I really wasn't sure.
Then a couple of days go by, it continues. I can literally see it shrink.
[00:15:37] Speaker B: That is incredible.
[00:15:38] Speaker A: I call my oncologist, I tell him, he's like, well, congratulations. You've earned a one way ticket into my office every day. And I'm like, what do you mean? He's like, I've got to measure it. And I was like, you're kidding, right?
[00:15:51] Speaker B: You're the guinea pig now.
[00:15:52] Speaker A: Yeah, yeah, yeah. So I, I learned what not to tell your doctor. I mean you should. But right now I know it is immensely inconvenient. Don't tell them that. They can find out on a scan, but they didn't do scans on that treatment until the six week mark. So now where I said that I had some guilt in this.
My cousin, he's a yacht captain and like he and I are very close. He obviously fishes. We can connect.
[00:16:21] Speaker B: Yeah.
[00:16:23] Speaker A: At that. Like a month prior to me starting this trial, he talk to the owner of the yacht that he is on and he's like, can I take my cousin out in his last fishing trip? And literally he had that conversation with this very, very wealthy guy that.
[00:16:38] Speaker B: Right.
[00:16:39] Speaker A: Is hired him to run his boat. The guy said, yeah, just pay for the fuel, that's all you got to do. And which is a lot of money, but either way not commensurate to what was given.
And so my cousin, my dad, myself, my brother, we put everything together, we went out for a couple of days.
That trip was scheduled like on three days after Dose two.
And I'm sitting there immensely guilty. Like, I, I think the treatment's working, you know, not working.
It's funny. I can laugh at it now. Right.
[00:17:15] Speaker B: Yeah.
[00:17:16] Speaker A: And obviously no one would have been upset by it at the time. You don't think about it like that. You'll think about it like, like they did all this for me and for me it's. Nothing's gonna happen. And that's. That. That was the thought. Obviously that's the wrong thought. You don't want to think that, but. Right.
No, it's the only person, the only person that knew was my wife at the time. And she was like, you don't need to. And I, I didn't unders. Like, I couldn't comprehend it.
[00:17:43] Speaker B: Yeah.
[00:17:44] Speaker A: So, yeah, that happened. That was one of those funny little things. Wow. After, after the second dose of that one, the doses are three weeks apart.
So at the six week mark, so first dose finish, second dose finished. Just before the third dose, they did the brain scan. And the brain scan was initially, before treatment, the tumor was 1.4 centimeters in my brain stem in an area called pons, which is where all your important things that you don't think about doing are done. Like heartbeat and breathing. Little stuff.
[00:18:20] Speaker B: Yeah, minor things.
[00:18:22] Speaker A: Minor things.
So that's where the tumor was when. At that point. And so Initially it was 1.4 after the second dose. Before the third dose, it had shrunk from 1.4 to 0.4 centimeters.
[00:18:37] Speaker B: Incredible.
[00:18:38] Speaker A: 66% reduction in six weeks.
They made the judgment call that, like, I can't go six weeks. Teen scans, they're doing it every three weeks because it's obviously doing something.
[00:18:49] Speaker B: Yeah.
[00:18:50] Speaker A: And at the nine week mark, it went from 0.4 to 0.1. And then at the 12 week mark is undetectable in migraine stem on scans.
[00:19:00] Speaker B: That is incredible.
[00:19:02] Speaker A: Yes. And the next part's the weird part because it's a conversation you do and don't want to have.
So I went into a clinic visit with my oncologist, Dr. Daniels, at the time, and he looks at me and he says, well, congratulations, you're officially outside of the guidelines of both science and medicine, we're guessing from here on out. And I, I said, well, what does that mean? He's like, well, yeah, really, we have no idea what to do with you because they're like, you're in a position that everyone wants to be in, but like very few make it. So it's not something that we think about and not something we encounter very Often. Now, he didn't say like that. I'm paraphrasing.
[00:19:40] Speaker B: No, I understand. But basically he's saying he didn't. They don't know what to do for follow up.
[00:19:44] Speaker A: No idea, right? No idea. They gave me two choices. They're like, well, here are your two choices. You have option A, which is stay on trial. Maybe it works. We had no idea. Now, mind you, I had big, giant tumor in my mouth at this point in time. Probably the size of a softball. Like, it was very large. Oh, yeah. No, I like the, it, it took over the entire. What you can't see. Like, you can see the outside of it on the inside. It goes all the way to the back.
[00:20:09] Speaker B: Wow.
[00:20:10] Speaker A: Everything on the inside, the entire mandible, all the teeth, all the guns, all the stone was tumor.
So, yeah, this, this surgery that you see, it literally goes to deck here on the inside. It's, it's extensive. It's the entire interior of my mouth.
So at any rate, I can either A, stay on trial, maybe it works. Who knows, right? Or D, we can cut out the only tumor that we know you got. And I said, well, if you were in my shoes, what would you do?
[00:20:40] Speaker B: What would you do? Yep.
[00:20:42] Speaker A: And I made him tell me, from a medical perspective of a guy that with you sitting where I'm sitting, what's he gonna do?
[00:20:48] Speaker B: Yeah.
[00:20:48] Speaker A: If you've got a melanoma that you can cut out, cut out a melanoma. That's exactly what he said to me.
[00:20:53] Speaker B: Yeah.
[00:20:54] Speaker A: I said, surgery.
[00:20:56] Speaker B: Yeah.
[00:20:58] Speaker A: I had some insurance issues at that point in time, because now, mind you, he was at UCSD and I was a Kaiser patient. And so I had to learn how to circumnavigate the insurance denial side of things. And that was, that was interesting.
However, I, the only upside to this was, is the guy that had to do the injections for the trial, he was a head and neck surgeon. And so I, I literally went to him and I said, hey, can you take my case to tumor board and at ucsd, see what they say? Because Kaiser declined it. They declined to do surgery. And he said they did. And I said, yeah. And that was on a Friday at like 5:00pm I, I, I think I sent in a text. I can't remember how I did it, but it was, I, that's who I talked to. And By Monday at 6:00am, he said, I'm gonna have my assistant call you this morning, and you're, you're approved for surgery with ucsd. I sent that off to Kaiser. Kaiser Said, no, no, no, no, we're not going to pay for ucsd. You can do that here. And so my head and neck surgeon at Kaiser called me later that day. He's like, yeah, I was on the UCSD call. I knew that they were going to do this. I was helping you get it approved there so we could force.
And so he.
So to be clear, I was very proactive with both sides of this. I was kind of playing everyone at the same time. And that's what I mean by I had to learn how. Like, I didn't know I needed to do that. Now I do. And.
But yeah, it was 30 days later, I did the surgery. The surgery, in short, is called a mandible fibula. Free flap to translate that. They took my mandible from there to there.
[00:22:40] Speaker B: Yeah.
[00:22:41] Speaker A: And they replaced it with the fibula from my right leg in this case.
And with that comes the vein and soft tissue. As you can probably see, the vein can't, but the soft tissue, can they? And yeah, five days later, the, the head neck surgeon, his name's Dr. Nolan, he came in and he handed me the pathology report. And I wanna, I wanna clarify. He was a Padres hat, board shorts, Hawaiian T shirt and flip flops. He did not come.
[00:23:12] Speaker B: California guy.
[00:23:13] Speaker A: He is, he actually is. He is born and raised here in the military. He's become a friend at this point and.
But born and raised here. But point being was he came out of this way to come give that to me because, yeah, it was, it meant a lot to him as well. So some of the battle that you have is who you aren't working with and yeah, tough, but yeah, not.
[00:23:36] Speaker B: And that pathology report said, oh, I
[00:23:39] Speaker A: got clinical negative margins of 1 cm or larger in all areas including nerve dome and soft tissue.
So it left me with a diagnosis of stage 4 mucosal melanoma with no evidence of disease.
[00:23:52] Speaker B: Wow. And that was when. When did you actually.
[00:23:55] Speaker A: That date of that. That would have been October 4th, 2021.
[00:24:03] Speaker B: Wow. So at that point you have eventually. This has now been a two year basically, right?
Two year process.
[00:24:11] Speaker A: 18, 20 months somewhere in there.
[00:24:12] Speaker B: Yeah.
I'm sure all along the way there were points of uncertainty. It sounds like, I mean, the major surgery and all of that. What kept you going? I mean, what, what was the thing that kind of kept you going?
[00:24:24] Speaker A: It's obvious. I mean, there's no sugar coating it. I was diagnosed right when my daughter was born and she's still the highlight in my life and both of them are now.
But yeah, I, I, every day I made videos trying to tell her about the future and that I'm not there and try to give her advice. And I hated making those videos. I genuinely hated it. I still haven't deleted them. And I really want to, but I don't. I can't just because I had no idea what the future has. But aside from that, I like that having to do that and the potential of not being there is what set me off. Like, I couldn't get up and I never did. And it was, it was terrible making those videos. I, I and I have not been able to watch a single one since.
[00:25:18] Speaker B: That's what I. So you still have them all?
[00:25:20] Speaker A: Oh, yeah.
[00:25:21] Speaker B: You haven't watched them? Has your wife watched them? Nobody's watched them.
[00:25:24] Speaker A: No one's watched them.
[00:25:25] Speaker B: So they're there. But wow.
[00:25:27] Speaker A: She could access them very easily. That would not be hard. She's never asked. I mean, I, she's watching naked, majority of them. It's not like she's not aware.
But yeah, it was, wow.
[00:25:41] Speaker B: Well, and your journey didn't even end there because as I understand you include you experienced an opioid dependency that became more apparent toward the end. So I'm wondering if you can share what you feel comfortable sharing about that whole experience.
[00:25:57] Speaker A: So I'll treat that as I'll go kind of back to the beginning to skip all the cancer side of it, all the treatments. I had several different things that caused unbelievable amounts of pain and something that, that a head and neck cancer patient oftentimes will have. If they get radiation, they'll get something called mucositis.
And mucositis translates to the swelling of the mucosal tissue in your mouth or throat. It can be esophageal, it can be oral, it can be a couple stops.
But it is outrageously painful, and it's widely regarded as like, one of the most painful things you can go through. And I, I ended up doing 3D rounds of radiation. And yeah, I, I didn't know the timeline of how fast the physical addiction of opiates kicks in, but it's 30 days, give or take.
[00:26:52] Speaker B: Really?
[00:26:53] Speaker A: Yeah, give or take. But it's different for everyone. Everyone's now slightly differently, but ballparking it, it's 30 days now. You might be on a small dose of opiate. That's fine. It's not that hard to get off the small. It's not gonna be fun, but it's not that hard.
Unfortunately for me, my initial radiation was right at diagnosis, after surgery. So I went from surgery to surgery to radiation. I never was off of them in that period of time.
And as time had gone on, when you stop taking them, when you have a physical addiction, you have this pseudo pain that kicks in and you don't. You think you're in pain and you may or may not be. I don't. Like. It's different for everyone. You get cancer. It's complicated. So you don't know. And I didn't know back then that that pain may not have been nearly as bad as what my body was telling me it was.
[00:27:47] Speaker B: Yeah.
[00:27:47] Speaker A: So I didn't stop.
And that continued for the entire treatment cycle. And simultaneously, palliative care was looking at me as a stage 4 mucosal melanoma patient, which prognosis is horrific. It's under, like, 3% survival rate.
It's really bad. And they weren't concerned about having to get me off because I had virtually no chance of survival.
[00:28:18] Speaker B: Wow.
[00:28:18] Speaker A: And so they.
They just gave me whatever I asked for. And was it necessary?
Probably to some extent. To the extent that it was given.
Questionable. I don't know.
[00:28:33] Speaker B: Yeah.
[00:28:33] Speaker A: Like that's. That's a complicated answer. And there is no right answer to that either. Yeah. Fast forward that to the end. I find out that I. First of all, I was in the hospital for a month after that surgery. So I was still getting ops.
Fast forward me getting out of the hospital. I'm at home. It's around.
What's it called, Halloween of 21. And I don't try to get off him right away because I just wanted to be home for a little bit and, like, recover.
So I stay on for a little bit. Come about Thanksgiving of that fall, I decide, okay, it's time to start whittling down. I tried to stop taking them immediately. The withdrawals weren't. Now, I gotta clarify. My dose wasn't a standard dose.
My dose was immensely high because I built it up. The tolerance over the years and the dosage that I was at by the end, I was taking 500 milligrams of Dilaudid a day.
It's an incredibly high dose. And. But that. That was over a year and a half to get there. It did not happen quickly.
I tried to stop taking that all at once. And that was a mistake.
[00:29:46] Speaker B: Cold turkey, you just.
[00:29:48] Speaker A: I lasted about maybe 26 hours.
The think of the worst flu you could ever have hitting you all at once.
And. Yeah.
And literally all that fixed, it was a till they'd all go away. And that's. That's the biggest Issue with it is that you can, you can you get hit in the face of those withdrawals and they're, they, depending on the person, it can be severe of the dosage, it can be super severe like it was for me, or it can be mild. And yeah, you get, you get punched in the face that. And until it makes it go away and it, it sucks. It really does. Because you have to overcome the mentality of like, I can just go take something and they go away now.
[00:30:38] Speaker B: Right.
[00:30:38] Speaker A: To be clear, I had to. At that point I didn't know what I was going into.
[00:30:42] Speaker B: Right.
[00:30:42] Speaker A: Contacted palliative care, told them what was going on and they said, okay, you've got withdrawals. I didn't even know that it was withdrawals at that point.
[00:30:49] Speaker B: Oh, interesting.
[00:30:51] Speaker A: It hadn't dawned on me that that was what I was going through.
And they, they said, okay, we're going to taper you down slowly. Okay, fine. What does that mean? And they're like, well, we're gonna try dealing like. So a dilaudid pill is 8 milligrams on the highest dose that they can get you at home.
And so we were like, let's just take you down 8 milligrams every three weeks. Okay, fine, I try that. Now. Don't get me wrong, I didn't have nearly as severe of withdrawals.
I had withdrawals the entire way through. So every three weeks I was dropping down between 4 and 8 milligrams. It was a ballpark number.
Eventually I got to the point, I want to say it was around May or June of 22. I got to the point where I was, I think it was 14 milligrams off the top of my head.
And I, I was like, I'm so sick of this, I'm done. And I just stopped. And I like to clarify, I should not have done that, that was a mistake.
But I did. And it, I, I didn't have. And I, I stopped entirely. I didn't go like, had a dose to go away through a day. I was done at that point in time.
I did not feel like myself for six to eight months after that.
[00:32:08] Speaker B: Wow.
[00:32:09] Speaker A: It took, it literally. Felt the closest description I can give to it. It kind of felt like an out of body experience for like six to eight months. I don't, that's not right.
But it's the closest explanation I can give to it. And yeah, it, I, I did not feel like myself. Apparently my wife thought I was always angry. I wasn't, I was miserable.
[00:32:32] Speaker B: Right.
I mean, were you still having any kind of pain?
[00:32:35] Speaker A: No, no.
[00:32:37] Speaker B: So it was all the withdrawals, it was all the withdrawal symptoms.
[00:32:40] Speaker A: It was a hundred percent withdrawals. I am missing the trigeminal nerve on my left side. I feel nothing on that entire side of my face.
I have no feeling whatsoever. And so no, I. I couldn't have been in pain. It was physiologically impossible.
[00:32:56] Speaker B: Wow.
[00:32:57] Speaker A: So no, no, no pain at all. Did I have body aches? Did I feeders, chills, vomiting, diarrhea, you name it. Yeah, had all of that. And it was all the opiates that caused it and the urban withdrawals, I should say, not the opiates.
[00:33:12] Speaker B: Right, right.
[00:33:14] Speaker A: And yeah, it was, it was, I think about a year in total from deciding that I was done until I finally felt like a human being again.
[00:33:26] Speaker B: And so that would have been when, I mean, so now we're in what ballpark again? It would have been 26.
[00:33:33] Speaker A: July. Oh, you mean from the opium.
[00:33:35] Speaker B: Yeah, from like. So how long ago was that?
[00:33:37] Speaker A: Oh, that was, that would have been like November, December 22nd.
[00:33:43] Speaker B: Okay.
And since then any. Are you doing follow up? Do you have any?
[00:33:51] Speaker A: Oh, yeah.
[00:33:51] Speaker B: Like where do things stand now?
[00:33:54] Speaker A: Okay, so follow up for me consists of. I mean, I was a terminal stage four patient, so.
[00:34:00] Speaker B: Right.
[00:34:02] Speaker A: For the first two years, two and a half years, I was doing PET scans, MRIs every three months.
And yeah, they, they kept a very close eye on me for a little while. Now that being said, Dr. Daniels, at the time of after surgery, I. I walked into his clinic cancer free, effectively, as far as everyone knows.
And he looks at me and he says, if you make it six months without any re. Reoccurrence, I think you're fine. Now to clarify that from a non clinical perspective, I did a ton of genetic testing on the tumor. And like every doctor that saw me wanted to do genetic testing. So I had like five different panels.
[00:34:46] Speaker B: Right.
[00:34:47] Speaker A: And every single one of them came back with one key thing, which was my cell growth rate. And the cell growth rate for the tumor that I had was in the 99th percentile.
Wow. So if it was going to come back, it was going to come back really fast.
[00:35:02] Speaker B: Right.
[00:35:02] Speaker A: And so he said, you make it six months, you're probably in the clear.
[00:35:06] Speaker B: Oh, I see. Okay.
[00:35:08] Speaker A: And. And that was the apprentice, the conversation. And I said, okay, so at three months, no evidence, at six months, no evidence. And that's multiple PET scans. Like they did a PET scan and then they repeat it an hour and a half later to see if there's any difference. Between two and.
[00:35:23] Speaker B: Wow.
[00:35:23] Speaker A: Yeah. No, I was doing like two PET scans in one visit and an mri.
[00:35:30] Speaker B: That's some serious follow up.
[00:35:32] Speaker A: Yeah. So I did that for the first two and a half years and then he migrated me to every six months. So that's where I'm at now. And I officially, in. What is today, the 15th? Today is. So I will go into clinical remission in about 45 days.
[00:35:51] Speaker B: Wow.
[00:35:52] Speaker A: So that's amazing on ballparking, the number non
[00:35:57] Speaker B: clinical remission being five years.
[00:35:59] Speaker A: Correct. Right, yeah.
[00:36:01] Speaker B: Congratulations. I mean, that is amazing. I mean, I know it hasn't been easy. I know it has.
But. Wow. That is.
[00:36:12] Speaker A: He. He scheduled his final visit with me on October 1st.
[00:36:16] Speaker B: He did.
[00:36:17] Speaker A: Wow.
[00:36:19] Speaker B: Well.
[00:36:20] Speaker A: Wow.
[00:36:21] Speaker B: I'm wondering if there's anything I haven't asked you that you would want to share with someone listening about any stage of your journey.
[00:36:31] Speaker A: So we touched on it and it's hard to describe the answer to your question without having gone through any. Something. Anything medical. So I'll get it. And it's. People have to interpret it in their way.
So the biggest lesson that I learned in all this, whether it had been the fighting with insurance or the dealing with doctors, is that I had to learn on the fly everything that I was going through. And it's not easy doing that. And you have to be able to go to your doctors and tell them why you do or don't think that treating X, Y or Z is right for you and know why and be able to articulate to them that standard of care may or may not be the right choice for you.
And I learned that at the point in time when I ended up firing the first oncologist. And it finally caught, like, I ended up being transitioned to a oncologist that dealt with clinical trials. And she, she effectively told, she taught me a lot of this that I didn't know I could do it and say, I want to go here and get this trial. I literally. So for that, when I got the trial, I handed her the paperwork, said, here, I want this trial. And she said, okay, no problem. I was like, what do you mean, no problem? It's at ucsd. She's like, yeah, that's no problem.
Okay, well, what do I have to do? Like, I didn't know any of this. So learning how to become an advocate for yourself and, and learning how to get your doctors on your side. And they're always on your side, but they're, they don't necessarily like each doctor seeing what, 30 patients a day, whatever the number Is now why are they incentivized to go above and beyond for an individual if the individual doesn't care any more than they do? And it, it took me firing my oncologist and then figuring out that, like, I show her the clinical trial and she says, yes, that was the spark. That was like, oh, wait, I have way more control over this than I thought I did.
And yeah, the lesson is that the patient has all of the control and it unfortunately can take too long to learn it.
And learning how to be an advocate sucks. It's not fun, and it's not a fun process, but it's necessary. And yeah, it's a lesson that I wish I could describe to somebody that it's impossible if you haven't gone through something to understand, like the dare you're running into.
[00:39:15] Speaker B: Well, even then, what you've said in terms of being an advocate, learning that you can ask for it, I mean, you know, you don't have to wait for them to offer it is a huge lesson. And I think that's great. To describe her reaction of. Yeah, like, it's no problem.
[00:39:31] Speaker A: That's exactly what she said.
Okay, here you go.
[00:39:35] Speaker B: That. That is. That's excellent.
Well, Well, I always end with a light hearted note, so I'm gonna do it. Marshmallows over a campfire, slow and steady or flaming crispy?
[00:39:48] Speaker A: Oh, at this point, because of my mouth, I. I'd have to go slow and steady. I can't do Christie anymore.
[00:39:54] Speaker B: You can't do it? Yeah.
[00:39:55] Speaker A: I'm in reconstruction right now on my mouth, so hopefully in the next year. So I'll get my.
[00:40:00] Speaker B: You'll get to flaming crispy?
[00:40:02] Speaker A: Yeah.
Yeah.
[00:40:03] Speaker B: How long do they expect? Well, since you brought that up, how long do they expect? Like, do they give you a number of surgeries? Do they give you a number of years? Is it just kind of like we're going to wait and see? Like, how do they even gauge that I'm on.
[00:40:17] Speaker A: It's complicated.
I'm on surgery 23.
[00:40:26] Speaker B: Oh, my.
[00:40:27] Speaker A: Don't hold me to that. I can't remember. I can figure it out.
[00:40:29] Speaker B: Surgery 23, just of the reconstruction phase.
[00:40:33] Speaker A: It's been complicated.
Long story short. Yes. Long story short is that I, I, they have to redo part of it because something was not done correctly. And so that original surgery that I did, that fibula free, Fluffy, I. Unfortunately, I got to do that again.
Yeah. The dome is no longer usable, so they have to take my other dome from the other leg to fix it. And it is fine. Like in the grand scheme of things, like, I'm fine. This is reconstruction. Is it fun? No, but no. Yeah, I'm not dying. Like, I can schedule it and there are upsides to it as well, so don't.
[00:41:16] Speaker B: Misch.
[00:41:16] Speaker A: Like, I. Yes, it's okay. But it was complicated because just complications came out, issues came up and yeah, it had to happen that way. So hopefully the answer to your question is two or three more surgeries.
Hopefully. That's my hope.
[00:41:32] Speaker B: All right, well, then after that, maybe you will be able to have the flaming crispy marshmallow. Yes, that would be a fitting end.
[00:41:39] Speaker A: I agree.
[00:41:41] Speaker B: Dane, thank you so much. I appreciate your.
[00:41:43] Speaker A: Thank you.
[00:41:44] Speaker B: Your vulnerability, your honesty about the whole thing about the opioid dependency and your charge to people to, to take control, you know, to be their own advocate because you're. You're living proof that it. It can have a huge impact. Life changing. Life saving.
[00:42:02] Speaker A: Life saving. Yeah. 100 so.
[00:42:05] Speaker B: Well, thank you so much. I really appreciate you being here.
[00:42:08] Speaker A: Thank you to those.
[00:42:09] Speaker B: To those of you who are listening, until the next time we gather around the campfire, keep living Beyond Cancer.
Foreign.
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