[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, you 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.
[00:01:16] Speaker A: Hello, everyone. This is Gail AKA Sunshine.
Today we are excited to have a repeat guest with us. Lana Bowes is joining us around the campfire. Lana, thank you so much for coming back.
[00:01:28] Speaker C: Thank you for having me back. I appreciate it.
[00:01:31] Speaker A: So just in case people didn't hear, the first episode that you were on, that one came out in fall of 2023 and it was called Getting my life back from cancer. So in case you listen to this one and you want to hear more from Lana, you can go find that one. But in case people haven't heard that one yet, can you tell us a little bit about yourself, just your background and include one fun fact?
[00:01:56] Speaker C: Yes, I was diagnosed with colon cancer in the fall of 2013. So actually about this time in 2013, I also have lynch syndrome, which is a genetic disorder that we found from doing genetic testing.
I'm married. I have a daughter who's actually going to vet school in Glassburg, Scotland.
[00:02:21] Speaker A: Wow.
[00:02:21] Speaker C: Could be my fun fact too. But yeah, it's a little crazy.
And I have actually just had a reoccurrence in May of this year.
[00:02:33] Speaker A: I think that has happened since we talked last time.
[00:02:35] Speaker C: It has. It did happen. It was a little bit of a shock. It was found in a screen, a normal screening of colon colonoscopy and just a normal once a year check. So no symptoms, no anything? Yes, yes.
And then my fun fact is I got a puppy on Sunday and I have forgotten how a puppy behaves. It's quite interesting.
[00:03:00] Speaker A: Yes. We did the same thing about four years ago and I can attest to the fact that you forget how adorable they are. But yes, yes, time consuming also.
[00:03:11] Speaker C: Yes. Guess very nosy. So it's been quite interesting, but it's exciting too.
[00:03:17] Speaker A: Oh, that's great.
So in terms of your diagnosis, you said the first time was December of 2013.
[00:03:26] Speaker C: October of 2013. October was with colon cancer.
[00:03:31] Speaker A: Okay. And at that time you did surgery, treatment or what order did you do?
[00:03:39] Speaker C: I did surgery the first time and did not have to have treatment. Actually, they got all the cancer the first time, but within a year it came back and so I had to do chemo at that time and then I would go into remission for a short period of time and then I'd come back out. So I came out of remission multiple times. I did multiple different treatments of chemo.
[00:04:02] Speaker A: And at some point during the reoccurrences and different types of treatment. I understand you did a clinical trial, is that right?
[00:04:11] Speaker C: That's correct.
[00:04:12] Speaker A: What point along your journey did that come into play?
[00:04:16] Speaker C: So in the summer of 2016, I had been on chemo for quite some time and we, we found that the chemo was no longer working.
And prior to that my doctor had been talking to me about different things. And there was actually a clinical trial that had came open. It was phase one of an immunotherapy trial, but in order to qualify for it, chemo had to stop working. So it was a double edged sword because, yeah, you don't want chemo to stop working, but you also don't want to lose the opportunity to have a clinical trial that you qualify for.
The type of marker I have is not that common. So to qualify for this trial, it was a little hard. So it closed on me.
It closed on me. And then.
[00:05:01] Speaker A: And you mean by that you didn't qualify like you missed the window?
[00:05:04] Speaker C: Yes, I didn't qualify because they were only taking 60 people and my chemo was still working at that time. That was in December of 2015.
And so about June of 2016, we were told that my treatment was no longer working and there really wasn't anything more that they could do.
I was getting transfused. Every treatment, I couldn't keep my blood counts up. I just, it was just a terrible time. And so I pretty much had accepted. And we were told that I probably wouldn't make it till the end of the year to Christmas to start preparing. Yes. And then right after that, my oncologist came to me and said, they're opening phase two of the clinical trial. They need 60 more people and you qualify.
So I had the initial qualifications, but even when you have the initial qualifications, you still have to pass a bunch of tests to be accepted into the clinical trial. With a clinical trial, they want everything to be the same. And so you have to go in with a baseline. And so even though my marker was there, which is what they needed, and they didn't have a lot of candidates for that, I still had to pass a series of tests. One, including my hemoglobin, had to be at least at a, I believe it was a 10 and I was getting transfused every chemo and barely getting into the eights and nines.
[00:06:27] Speaker A: Oh, gosh, yes.
[00:06:29] Speaker C: And so I had to. I had to maintain. I passed all the other tests, but I had to maintain my blood count. And I said, there's no way I'm going to be able to do this. I haven't yet.
So we transfer. I got a transfusion after I passed all the other tests. And then we just waited.
And I had to. It had to last for seven days. And I just kept, you know, praying that it was going to make it for seven days. And it did. On the eighth grade.
Yeah.
But all I needed was those seven days, and I was accepted into the clinical trial.
[00:07:03] Speaker A: Wow. So how did you hear about the trial in the first place? Had your doctor told you about it? Or is it something you had found, like doing some investigation? How did you find out about it?
[00:07:13] Speaker C: So I didn't do an investigation because I. I mean, I was really going through it. I was. Chemo remission, chemo remission. So I was so sick that I wouldn't have even considered even thinking because I had pretty much accepted. I'm not going to make it. Mom oncologist, though, was always looking at plan A, B and plan, you know, B and C. And I go to a teaching hospital, and they also do a lot of clinical trials.
So she was the one that was watching for it. So she's the one that found out about in December and then watched it again for it to come open for me to have access to it.
[00:07:51] Speaker A: Okay. And in your case, it was perfect timing, unfortunately. Unfortunately, because your chemo stopped working, but fortunately, because they opened it up around the same time it stopped working.
[00:08:02] Speaker C: Yes.
[00:08:03] Speaker A: And so then it was just a matter of passing those other tests. And thankfully, it all worked out. So tell us about the trial itself. What. What did that involve?
[00:08:12] Speaker C: So the clinical trial was actually. I. I actually called it a kind treatment.
[00:08:16] Speaker A: Oh, wow.
[00:08:17] Speaker C: Yeah. I never got rid of my port just because I'm really weird about keeping things the same. And I never had any issues. And my veins were really bad, too, so I wanted to keep my port. And so we used my ports to. And it was an immunotherapy where with chemo, I was there from opening to close because of everything I had to do with this one. The keytruda treatment was just a half hour, so I still. Yeah, so I still had to get my blood. Blood drawn every time just to make sure I made the counts. And with keytruda back then, good thing 2015, it wasn't FDA approved. And so they wouldn't even get it out. They wouldn't order it until all my blood work came back. Because it was $50,000 a treatment? Yes. Oh, my, yes. And if they took it out, it would be wasted if I didn't make it. And so I got a treatment once every three weeks.
I never had to get another blood transfusion again.
I never went back in the hospital.
When I started my clinical trial, my CEA mark was in the 3 digits. It was like 140, 150, something like that. And normal is 0 to 3.
[00:09:24] Speaker A: Oh, wow.
[00:09:24] Speaker C: Yes. And so it was at the highest it's ever been.
And it was just going up with the chemo since the chemo had stopped working. So with my keytruda, I was still getting my blood test and I was still being checked every three months with CTs.
And they had told me that don't expect big things out of the first treatment or out of the first ct because sometimes it looks like it's grown. And I said, okay. So I had accepted that because I'm a worry ward, I stress myself out, but I knew that, okay, my CT is going to be bad, it's going to be okay. It's still working. And so I had a pep talk with myself.
But my CA marker started coming down immediately. It started cutting down half every single time.
And at the three month CT checkup, I actually showed a reduction in the cancer, even though they said that I probably wouldn't.
[00:10:12] Speaker A: That's incredible.
[00:10:13] Speaker C: Yeah.
[00:10:14] Speaker A: So how long? So it was every three weeks.
But how long did the whole trial go on?
[00:10:20] Speaker C: It was for two years. Okay, it was for two years. And the phase one had only finished six months ahead of me. And so when we were getting close to completing my clinical trial, they told me that I had to make a decision on am I going to continue the keytruda because they have no data to support. Do we stay on, do we go off or do I go off of it? Well, I didn't have any. Anything to go off of because at that time when we first started talking about it, no one had finished it yet. And so I had to just. I had to deal with that, like, trying to figure out what was the right answer. And of course, my oncologist wouldn't tell me, my husband wouldn't tell me.
And then a couple weeks before I had to make the decision, it got FDA approved.
[00:11:03] Speaker A: Oh.
[00:11:05] Speaker C: So that was the good news because I said, well, even if I stay on it, I can't afford $50,000 a treatment, right? That's gonna work. But it got FDA approved and then the results started coming in and. And all but two people of that 60 had stayed cancer free for their two years.
And so I actually made the decision over. It was probably an hour visit and I changed my mind 100 times, said, I'm done. I need off this roller coaster. I've been coming here for so long, I need a break.
Final answer, I want to complete my treatment. And so that's what we did. I stopped treatment in June, June of 2018.
[00:11:45] Speaker A: Today's episode is brought to you by Lilly. Cancer changes lives. Clinical trials can change cancer. To learn more, visit cancer clinical trials lilly.com that's cancerclinicaltrials. Lilly L I L L Y.com so that was the end of the trial. And so between June of 2018 and just this last May, have you done any treatment? What kind of follow up have you done?
[00:12:16] Speaker C: So with a clinical trial, you're in it for 10 years, basically, and it keeps extending. So their fault, they've been following me this whole time.
And it seems like once a year I have to fill out more paperwork for things that they changed or added or learned. And so I was going every three months, even once I was finished. And then I graduated, I want to say at two years, I got to start going every six months. So I was very excited about that.
[00:12:39] Speaker A: And.
[00:12:40] Speaker C: And they still wanted to do a year, every year, colonoscopy, but I didn't want to do that because it was so hard. So I had actually negotiated every two years.
And then last year I had polyps and so my negotiations went out the window. Thankfully it did.
[00:12:56] Speaker A: Right.
[00:12:57] Speaker C: As in the routine colonoscopy is where they found the new cancer actually was a new cancer. It was not colon cancer. It was rectal cancer.
[00:13:04] Speaker A: Oh, gosh, yes.
[00:13:06] Speaker C: Which they said was a good thing.
They did that new cancer is a good thing, which means the keytruda was still doing its job.
[00:13:13] Speaker A: Oh, good.
[00:13:14] Speaker C: Yes, yes. And so I had surgery in May and I. They weren't able to get all the cancer because it was too deep, even though it was early stage. So I had to go back on treatment and I got to go back on keytruda.
[00:13:30] Speaker A: So currently, right now as we speak. So that was, what, not even eight months ago.
So now you are currently still on keytruda.
[00:13:42] Speaker C: I am, I am. I have one more treatment I should have finished in October, but I was having a lot of complications from it and the surgery. And so they had to hold me for almost 12 weeks.
[00:13:53] Speaker A: Okay.
[00:13:54] Speaker C: Then it came down to, do we even finish the treatment because of all your complications? And I said, I can't not finish treatment. I can't go through this again, and I have to finish.
So my final treatment is December 2nd, but they've actually already done some initial screening, and they show that the cancer is completely gone.
[00:14:14] Speaker A: Oh, that's amazing.
[00:14:15] Speaker C: Yes, yes, True. To continue to work.
[00:14:18] Speaker A: So because this was rectal cancer, did you have to meet a whole new series of tests in order to still qualify for the keytruda?
[00:14:29] Speaker C: No. It's actually a good question, because the reason I qualified for the clinical trial wasn't because of the colon cancer, because colon cancer wasn't receptive to it. It was my lynch syndrome and the type of biomarkers that I had.
[00:14:42] Speaker A: Oh, interesting. So really, it was this completely separate condition that has allowed you to go use this trial for two different kinds of cancer?
[00:14:50] Speaker C: Yes. Yes.
[00:14:52] Speaker A: And it's bruising. Effective.
[00:14:53] Speaker C: Gosh, that's amazing. Yes.
[00:14:56] Speaker A: With.
So with the reoccurrence, did you do any other kind of chemo or anything like that, or was it just the surgery and then keytruda?
[00:15:04] Speaker C: No, I won't ever go back on chemo again. I had multiple chemos, and personally, I just. I can't do chemo again. I just do it.
So I immediately. As soon as they told me that they think that the cancer's back, I immediately messaged my clinical trial nurse, can I go back ontruda? And my oncologist said, hold on, let's see. You're not. You're going to. You're too far ahead.
And so they immediately. There was no issue, no new paperwork. It was just tracking again to include this in the things that they already know.
So I was very fortunate to be able to go back on it and for it to work because, again, there was no. They had no information about us. They didn't know if it was going to keep working.
But Katrina stays in your body for quite a while.
[00:15:50] Speaker A: Wow. So it sounds like this has been a physical roller coaster, but I'm sure it has been a mental and emotional one as well.
[00:15:58] Speaker C: Yes.
[00:15:59] Speaker A: When. When you got the news that you had a reoccurrence, what. How did you respond?
[00:16:05] Speaker C: I'll be honest. I had got to the place of, you know, I was five years cancer free, and so I'd gotten to the place of, I don't have scan, anxiety, more I don't have anything.
So going into the colonoscopy, I still had no, nothing to worry about.
But when he coming out of the colonoscopy and I asked how, how was it in his face? And the things he said immediately shut down.
And then we went on vacation and I said they wouldn't. They said they weren't going to call me while I was on vacation. And then when we got back, my husband called because I couldn't even deal with calling.
And he told me that my cancer was back. And I went into a state of depression. Honestly, I just, I completely shut down. I just felt like this was it. I had been given my time and even though my mind knew better, it was just. I couldn't wrap my arms around it. And I stayed in bed. I cried a lot. I didn't see anybody. I didn't talk to anybody to the point that my husband started getting worried. I, I talked to my oncologist. She actually doubled my Paxil medicine to at least try and help with the depression some. And then my husband talked to the leader of my survivors group and she said, you know, I'm really worried about Lana. She's not right. There's something wrong. And he's like, there's something really wrong. And she said, can, can, can I come over and I. Can I bring somebody? And he said, yes, you can bring the whole group if you want. And she said, no, no, no.
Overwhelmer. But two people came and we had a really frank conversation and I was brutally honest about it on how depressed I was, and they helped me through it. And I started talking about it and asking for the help and just really trying.
So it's not to say it's been easy because it's the worst thing I've gone through in, you know, quite a while. And I did. I just, I just felt like, what's the point in all of this? You know, I'm having complications and. But I'm alive and I'm trying to think of that and I'm doing better. I'm not as doing as good as I should do, I guess, but I'm doing much better. So I take it as one day at a time. And that's a. My oncologist says to. I no longer stay in bed. I no longer cry. So I'm doing much better.
[00:18:23] Speaker A: In that aspect with having that support group, was it just the act of talking to someone and being open?
What was it that has given you that, what you needed to get out of bed and to do better?
[00:18:39] Speaker C: I think it was recognizing, you know, when they, when they were talking to Me, they said, this isn't you, Lana. You know, you've been the big cheerleader in our group. You've helped other people and we want to help you. What can we do to help you?
And having the conversation and then taking myself out of it, kind of saying, you know, giving me my words back at me almost for when someone else has had a reoccurrence and, you know, talking about the depression and it's okay and talking about medication.
And so I did the things I committed to do and it was just.
They understood, I guess, or my husband wasn't that my husband didn't understand. He understood in a different way. But to talk to people that actually got it and have been there on the journey with me, I think it just helped. And it wasn't like I got out of bed and I did everything right, right away.
[00:19:30] Speaker A: Right.
[00:19:30] Speaker C: But I started talking more about it and I started. Stopped avoiding things. And that helped. And I think that's one of the biggest things. People don't want to admit that they're depressed or that they're help. And I knew, I knew something was wrong, but I didn't know how to pull myself out of it. I just didn't know what to do.
And I just didn't even want to live. I just didn't want to go through it again. And I didn't know what to do. And I was just getting worse.
And so to face that head on with two people that I'm very close to helped me so much in recognizing I'm here for a reason and I can do this. I just gotta do one little baby step at a time. And so it took me a little bit, but I'm in a much better place. I can actually go into the doctor office and not cry, you know, because that's what it was in the beginning. Couldn't even talk to me. I would just start crying because I couldn't function.
[00:20:26] Speaker A: Good for you. For admitting that you needed help, for being willing to talk to those people. And the thing that comes to mind is that you shed a light on what you were feeling rather than keeping it hidden. And in shedding a light on.
Provided the opportunity to take one step at a time. Right. And to not stay kind of hidden.
Thank you, really, for being vulnerable and for sharing that. That is.
Yeah, that's great. I'm thankful for the people who. We're there for you and I'm so thankful.
[00:20:59] Speaker C: Absolutely.
[00:21:00] Speaker A: Yeah. Is there anything that you would want to share with people listening that I haven't specifically asked you about.
[00:21:08] Speaker C: I think that my journey was a little different with the clinical trial. So, yes, the first thing I would say is I strongly encourage anyone that's never had their biomarkers tested to get that done. Because I did that. My oncologist knew what my markers were, so she what to look for in the clinical trial for me, because, you know, with the biomarkers, they have an idea of what's going to work and what's not going to work versus going through all the different treatments. And the other thing I would say is don't wait. You know, if it wasn't for the trial that I was in, I wouldn't have qualified for any trials because I was too sick. You still have to pass physical tests. And so you might have the biomarkers, but because your liver shot or your, you know, your, your blood, whatever it is, is. Is not meeting the numbers, you're not going to make it into that trial. So you can make the initial qualifications, but if you don't make that physical part, you're not going to do it. And the longer you're in chemo and the. And the more your body is breaking down, the less likely that you're going to qualify physically for that clinical trial. And so strongly encourage people that if they have an oncologist that's just doing the same thing over and over again and nothing's changing and everything's by the book. Be your own advocate. Look for yourself. Find out what clinical trials are out there. And there's so many resources out there to look up clinical trials and go meet with them, get a second opinion. And that way, these doctors that are doing these clinical trials, if they have one come open, they think about you. They say, you know what? I remember Lana had this marker, and I talked to her, and I think this one would help her. And I think having that extra relationship would help, because you don't want to be in a position that you qualify for clinical trial, but you can't do the clinical trial because you're not healthy enough to do so. And so I just, I strongly encourage people, when they ask me, get that biomarker testing done immediately and be your best advocate. Don't wait on somebody else to.
To look for you. You know, I was so fortunate to have the oncologist that I have, like, she has kept me alive, and she's amazing. But not everybody has a good oncologist. I mean, let's be honest.
And they do standard care. So I just. I just want people to be more of an advocate. As well as look for people like me or anybody else. You know, don't be afraid to contact somebody. You know, I had people contact me across the country. They would look up the words katruda and they looked up other keywords and they would reach out to me and I'd say, well, how did you even find me? Well, because of your. You're. Because you're in. You're on the. In Google and I am. Wow. Multiple things. Because of my such a success story. And, you know, so don't be afraid because everyone's willing to help. We're like this family, a family that we don't want to be in been in any other situations, but we are. And I know I'm always willing to help somebody else and talk them through it.
[00:24:01] Speaker A: Well, thank you. And if anyone is listening and has questions for Lana, please go ahead and contact us through Epic Experience and we will get your information to Lana. Yeah, well, since you've been on before, I'm going to switch up the last question because I already, I already asked you about marshmallows over a campfire. So it's related, though. It's not that different. Okay, so if you were to make a s' more milk chocolate or dark chocolate on your s' more.
[00:24:27] Speaker C: Oh, no, it's all chocolate for me, so. Oh, goodness.
You know, I've never had a dark chocolate s' more, so maybe I should say that to try something new. But there's no wrong chocolate on a s' more.
[00:24:39] Speaker A: I have to agree with you. Definitely. Well, Lana, thank you so much.
I really appreciate you coming back and for being so vulnerable and talking to us about your experience with clinical trials.
[00:24:51] Speaker C: Absolutely. Thank you.
[00:24:53] Speaker A: Until the next time we gather around the campfire, keep Living Beyond Cancer.
[00:25:03] Speaker D: Thank you for listening to this episode of Campfires of Living Beyond Cancer. For more information about Epic Experience and our programs or to donate, please visit our
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[00:25:45] Speaker A: We will rise once again.
