[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.
[00:01:14] Speaker A: Hello everyone. This is Gail, AKA Sunshine.
Today we have Edie Harrison joining us around the campfire. Edie, thank you for coming back. Edie was here with us back in April or March Rather, of 2000 and 2020 23. So welcome.
[00:01:29] Speaker C: Thank you. It's good to be back. I'm happy to have this opportunity when you reached out to me about clinical trials. So thank you for having me a second time.
[00:01:37] Speaker A: Perfect. The first time we did hear more about your diagnosis around colon cancer because we talked during colon cancer awareness Month. Right back in March.
[00:01:47] Speaker C: Correct.
[00:01:48] Speaker A: So why don't you tell, for those who didn't listen to that episode, maybe give us a little bit of background about you and include one fun fact.
[00:01:56] Speaker C: Okay, so just general about me or cancer first.
[00:01:59] Speaker A: Yeah, let's, let's general.
[00:02:01] Speaker C: Okay. General is I still live where I was living before, which is Chesterbrook, Pennsylvania. It's a suburb of Philadelphia. I still work for the same organization doing the same job. I'm the director of a birth 2, 3 home and community based early intervention program.
But I am set to partially retire at the end of next year.
[00:02:21] Speaker A: Congratulations.
[00:02:22] Speaker C: Thank you so much. So just a little over a year to go. I've been with the agency for 27 years, so giving them a lot of time. So I'll do a stress free job just for health insurance and then go from there.
[00:02:35] Speaker A: Very nice.
[00:02:36] Speaker C: My daughter, I think had just. She was in her freshman year at college last time and now she's a junior at University of Delaware studying wildlife, ecology and conservation.
And as you said, I did attend camp. I've also done regional outings both as a guest and also organized a few.
[00:02:53] Speaker A: So.
[00:02:54] Speaker C: So love that experience.
[00:02:57] Speaker A: Well, awesome. That is wonderful. So your diagnosis. Oh, did you tell me your fun fact?
[00:03:01] Speaker C: I didn't tell you my fun fact. So my daughter and I would love to see every state in the United States, like preferably from the ground level, from car.
So we've done like a good three quarters, I think of the states.
[00:03:14] Speaker A: Awesome.
[00:03:15] Speaker C: So this coming summer we're going to do the northwest of the country, which I have not Done yet. Washington, Oregon, all the way over to south and North Dakota and back.
[00:03:24] Speaker A: Oh, how fun.
That is very cool. I have not totaled how many states I've seen, so. Good for you. That's a fun thing to do together too.
[00:03:33] Speaker C: We do. We travel well.
[00:03:35] Speaker A: So I've mentioned colon cancer. So give us the. The abbreviated version of what happened. And then I know you did a clinical trial. That's the whole reason we're talking about this. So go ahead and tell us about that as well.
[00:03:48] Speaker C: Okay. Well, I mean, I had no clue that cancer was even on my Horizon. I turned 50 and did first a cologuard, and then that came back pos. So just part of the routine thing that my doctor recommended.
No risk factors, no history, no real symptoms. But after the colonoscopy, I woke up and was informed that there was a big mass. So lots of tests, lots of scans. Ultimately, it was 3B. They classified it as rectal cancer because it was right on the border.
And because of that, I had the chemo and the chemo. Radiation. First to shrink the tumor as much as possible, then the surgery. Okay, so that all went well. And so I basically was treated for just one full year from March of 2021 till March of 2022 with my last surgery, which was a reversal of my ostomy.
But the tumor, which I named Lumphre, if you don't remember, I wanted to give it a funny name.
Scary to talk about. So Lumphre was removed January of 2022. So since then I've been considered Ned. No evidence of disease.
[00:04:52] Speaker A: So wonderful. That's great. And in case you're wondering, so the. The episode that Edie did before was in March 2023, and it has the title of being saved by an at home screening. Right.
[00:05:06] Speaker C: Y.
[00:05:07] Speaker A: So again, please don't.
[00:05:09] Speaker C: Sorry. My dog is snoring.
[00:05:10] Speaker A: If that's. You hear, no problem.
Don't discard or discount. I should say the importance of doing at home testing.
So.
[00:05:20] Speaker C: Yep. Oh, I. That's my soapbox for everyone. And especially colon cancer. And colonoscopy can be such an uncomfortable subject. But we've got to talk about it because people younger and younger are getting it, and some insurances let you get screened at 45. So talk to your insurance.
[00:05:37] Speaker A: Yes, exactly. Okay, so can you tell us a little bit about the clinical trial you were on when you found out about it, how you found out about it, what it entailed, all that kind of stuff?
[00:05:49] Speaker C: Sure.
I'm a researcher for things. When I found out I had cancer I kind of, in a way, went too far sometimes on the Internet looking up things. So I learned not to look up the medical things of my particular diagnosis. But I found some good support groups on Reddit and Facebook and learned lots of little details on there, including about this clinical trial. People kept talking about signatera.
So when I asked about it, it's something called a liquid biopsy where it's created from your particular tumor cells. And then they test your blood at regular intervals to look for those tumor cells, which would let them know that your tumor is still there somewhere, shedding cells. And it might be too small to pick up on a scan, but a recurrence is coming.
So that sounded good for me. So I was being treated at the Abramson Cancer center, so I asked my oncologist if they were participating in.
So I did the steps I needed to do. They did blood work. I had this right kind of cancer for it, Stage three colorectal cancer.
They also have similar liquid biopsies for lung cancer and breast cancer, just so people are aware of that.
So once they took lump free name of my tumor, they did the removal. They took some lumphrey cells and sent them to Natera company, which is the one that did Signa Terra, and they created a test just for me. So when they tested my blood, they would look for lump free bits.
[00:07:21] Speaker A: Right.
[00:07:22] Speaker C: Bloodstream.
So that was.
So I had my surgery in January.
We had some hiccups along the way in getting the first results. So I'm not sure if you want to go there yet or if we're still talking about just the first results.
[00:07:39] Speaker A: From your surgery or from the.
[00:07:41] Speaker C: No, from the signature results.
[00:07:42] Speaker A: Oh, yeah. So let me. I just want to make sure. I understand. So you are actually doing this research before you ever had surgery.
[00:07:49] Speaker C: Right.
[00:07:49] Speaker A: You had already. So once you had surgery, kind of the information for doing this trial was already in place.
[00:07:56] Speaker C: Yes.
[00:07:57] Speaker A: And they were able to go ahead and do it. Okay.
[00:07:58] Speaker C: Yep.
[00:07:59] Speaker A: So, yeah, go ahead and tell me about the complications at first.
[00:08:03] Speaker C: Yep. And even if. Even if I had already had the surgery, I mean, they save some of your tumor, so they would have had some to send anyway. But so I've learned with clinical trials, and this is something I have for later life. I have a tip that I've learned from my experience, but they just really didn't have it together. It's only as smooth as the place who's running it. Because Signatera.
Because the body that governs it, but each oncologist who does it. So they didn't have a really together team that did it.
So it's supposed to. The first results are supposed to take like two to three months because they.
They have to create the test first.
[00:08:47] Speaker A: Right.
[00:08:47] Speaker C: So after the surgery, I'm waiting with bated breath because I couldn't really feel like I was no evidence of disease until I saw a negative result. So I didn't want to get too complacent and happy first. So after two months, you know, I finally called around and somehow my blood or the sample just got like lost in the sauce somewhere.
[00:09:09] Speaker A: Oh, no.
[00:09:11] Speaker C: Something either the, the tumor or my first blood test got lost in the sauce. So I had to do it all over again and wait like another two months.
But finally, finally got the results and they were negative. So that was just.
[00:09:24] Speaker A: So do they keep doing this? No. So they have lump free bits, they.
[00:09:27] Speaker C: Have lung free bits.
[00:09:29] Speaker A: So every time.
How often are you getting tested?
[00:09:31] Speaker C: Yeah, so it was. Well, it's over now. It was a two year clinical trial, so I started in 2022, so it just ended earlier this year. But every three months, a nurse would come to my home and draw my blood. They would send me a little kit in the mail that had the vials and the cold pack and everything would come and take my blood. And then about a couple of weeks after that, I get the results. But, you know, each time with this particular team, I would have to kind of call around and sometimes paperwork needed to be done. Like, I was the one that had to push each step forward.
So that was frustrating, but I did it.
[00:10:07] Speaker A: Yeah.
[00:10:08] Speaker C: So I had. Because one negative liquid biopsy is great, but it could maybe just have gotten blood that didn't have the cells in it and they were circulating somewhere else in your body. So I had ultimately eight negatives in a row, which is pretty definitive that it's gone. I mean, that's lump free is gone. It doesn't mean that, you know, some other cancer, but I put that on the back burner. Like, lump free is gone.
[00:10:33] Speaker A: Lump free is gone. So this is a different clinical trial in the sense that it wasn't a treatment. It was more of a way to kind of monitor and make sure that lumphrey was not making another appearance somewhere in your body.
[00:10:48] Speaker C: Yeah.
[00:10:48] Speaker A: Is that right?
[00:10:48] Speaker C: Exactly correct.
[00:10:50] Speaker A: So every time, like. Well, first let me.
When you thought about doing the trial, did you find it stressful, hopeful? Like, what was your kind of mental state going?
[00:11:02] Speaker C: Oh, I was like hopeful, excited and chomping at the bit. I couldn't wait, like, because during the treatment, I had certain tests that were showing me that the treatment was working.
So this is going to be, like, a way to show me that the treatment worked, so.
[00:11:17] Speaker A: Exactly.
[00:11:18] Speaker C: I couldn't wait. And, you know, there wasn't much I had to do. I just had to, like, get my blood drawn. That's it.
[00:11:23] Speaker A: Well, yeah, in your case, we've. This is part of a series, and we've been talking to other people who had to have a whole bunch of things line up.
You alluded to the fact that you had colon cancer, colorectal cancer, and that it was stage three. So was that part of the prerequisite?
[00:11:38] Speaker C: Yeah, I can't remember the specific, but it was. Yeah, it was stage like 2 and 3, I think. Okay.
Yeah. But there were a few there, and then I'm not sure what they were looking for in the blood work, but whatever that showed, I was a good candidate.
[00:11:53] Speaker A: Today's episode is brought to you by Lily. Cancer changes lives.
Clinical trials can change cancer. To learn more, visit cancer clinicaltrials.lilly.com that's cancerclinicaltrials.lilly l I L-L-Y.com Right. And then they already had lump free, so they already had that. So then after that, it was just a matter of getting your blood test. So did you have. We. On the podcast, at different times, we've talked about ganxiety in terms of. Right before you get your skin, did you have that every time you got your blood test?
[00:12:26] Speaker C: Yes, yes, I did. Yes, I did. Especially the first one, because I just prepared myself and of course I'm doing research, like, if it's positive, what's out there? So that was kind of good because I learned of another clinical trial for like, a vaccination kind of thing for people in that situation. So I had that on the.
[00:12:47] Speaker A: So really, you. It was you doing your own research, and had it been positive at any step, you would have had the information to go to your oncologist and say, hey, I read about this.
[00:12:57] Speaker C: Yeah.
[00:12:58] Speaker A: Trial. Yeah, good for you. There's something to be said for being your own advocate, right?
[00:13:03] Speaker C: Yep. What surprised me, though, is something with the clinical trial is people on the message boards, some of them, like, at least half of them said their oncologist said they wouldn't do it. It wasn't, you know, because there's nothing they could do even if they saw it. So it, you know, it wouldn't change anything. So I just. I can't understand that. If my oncologist had said that, I would have Found a new oncologist.
[00:13:23] Speaker A: Yeah. Well, and that's interesting. They say there's nothing they could have done, but had Lumphrey shown up, you just said that you had found another clinical trial. I mean, had you and your oncologist talked about that, what would happen if it was positive?
[00:13:38] Speaker C: Yeah, I mean, it would just be really close monitoring. I think the most benefit it would have been is instead of maybe if I had a scan coming in six months or three months and they saw a positive, they would do a scan much sooner intervals until they saw enough to be able to do treatment.
[00:13:53] Speaker A: Yeah. So once the trial began, really, the impact on you was blood test analysis.
[00:13:58] Speaker C: And tracking down all the steps. That ended up to be my job.
[00:14:02] Speaker A: Which ended up being a bigger job, probably thought it would be.
And so in that sense, it was a lot different from going through chemo and radiation and all those things, because this really was a monitoring trial as opposed to.
It's amazing to me that they could create a test specifically for lump free for your situation. To me, that's amazing.
[00:14:23] Speaker C: Yeah.
[00:14:24] Speaker A: Is there anything that you wish you would have known beforehand? Even though this wasn't a treatment clinical trial, it still had obviously some complications along the way. Is there anything that you wish you would have known beforehand?
[00:14:39] Speaker C: Yes, I wish I would have known that clinical trials are only as smooth as the person running them, because my dog is actually in a clinical trial right now for a drug that's supposed to maybe help dogs live longer. It's called Loyal.
But there's no vets within an hour of me doing it. So there are two vets about an hour away. So the first one I called, the woman, like, had no clue what this clinical trial was. She said she put me through to someone who did and kept hanging up on me. So after the second hang up, I'm like, no. What? I'm not going down. Never mind.
So I called the other vet, which is another half hour farther, but they knew just what I was talking about. They had the steps laid out, and so it's very. Been nothing but smooth, so.
[00:15:24] Speaker A: Well, I would have never guessed that there was a trial, but thankfully, your own experience has helped Dog also. Wow.
Is there anything else that you would want to share with someone listening who's considering a clinical trial or just going through cancer in general?
[00:15:42] Speaker C: But, yeah, yeah, well, for me, going through cancer in general, like, knowledge really was power. Like, you have to be careful. Don't look up every term in your report until your oncologist can explain it, because I scared myself silly times.
[00:15:57] Speaker A: Dr. Google can do that to you.
[00:15:59] Speaker C: Yeah. But I highly recommend support groups online. I mean, colon cancer has a whole like, it's called colon town. It's a whole Facebook thing. And there are many groups for every aspect from your stage to neuropathy to everything you can imagine. And yeah, so they know things that, you know, your oncologist might not have heard yet. Yeah, like my oncologist hadn't heard of this clinical trial and it was happening right there at Penn.
[00:16:24] Speaker A: Wow.
Yeah, anything for, for someone with a clinical trial that.
[00:16:30] Speaker C: Yeah, go. I would say go for it.
One, you know, it can help yourself. But also now signatere is becoming more of a routine follow up part of care, so.
[00:16:41] Speaker A: Oh, really?
[00:16:42] Speaker C: Yeah. Yeah.
[00:16:43] Speaker A: So that again, you. You mentioned lung cancer and breast cancer in particular, where they're doing the same thing. They're testing the tumor and then your follow up includes blood tests to look for that.
[00:16:54] Speaker C: So CT DNA. It's all about circulating tumor DNA. That's what all the different tests are looking for.
[00:17:00] Speaker A: That's amazing that they're able to do that.
Well, good for you for being your own researcher and advocate because I am sure that even though each blood test was stressful, at the same time, getting eight negatives gives you huge peace of mind. And again, you said it. You don't know what's coming. But for right now, you can be confident that there is no evidence of disease.
[00:17:25] Speaker C: Yes and no. Like whatever comes down the pike, there are people researching it right now and coming up with things that they're testing out.
[00:17:33] Speaker A: So that's awesome.
Well, thank you so much for sharing that. Now, since you have been on the show before, I have already asked you about marshmallows over a campfire, so I'm going to change it just a little and ask you about s' mores, a delicacy at the campfire.
If you were to make a s' more, Is it milk chocolate or dark chocolate?
[00:17:55] Speaker C: For now it's. It's dark chocolate because I. I don't do dairy, so I would.
[00:18:00] Speaker A: That was an easy answer.
[00:18:01] Speaker C: Yes, it is.
[00:18:02] Speaker A: There you go. Equally scrumptious.
[00:18:05] Speaker C: Yes, definitely. Yep.
[00:18:07] Speaker A: Well, Edie, thank you so much for joining us again. If you want to listen to Edie's first podcast, that was back in March of 2023 and the can, the title was How I Never Get Saved by an At Home. Saved by an At Home Screening. And if you are of the age where you should be screened, please do so. Right.
[00:18:30] Speaker C: And even if you're not of the age. Press your doctor for a test if you think there's something wrong.
[00:18:35] Speaker A: Exactly. Well, thank you so much, Edie AKA Blaze.
[00:18:39] Speaker C: Thank you.
[00:18:39] Speaker A: Until the next time we gather around the campfire, keep Living Beyond Cancer.
Thank you for listening to this episode of Campfires of Hope, Living Beyond Cancer. For more information about Epic Experience and our programs, or to donate, please visit our
[email protected] Music for this podcast is provided by Moonshiner Collective. If you enjoyed this episode, please rate and review us so we can share our story with more people. Also, be sure to subscribe wherever you get podcasts so you'll know when new episodes are released. We hope you come back and join us for our next episode.
[00:19:23] Speaker C: Miracles. Fine, please. Still I Family Man.
We will rise once again.
