[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.
[00:01:11] Speaker C: Hello, everyone. This is Gail, AKA Sunshine. Today we have Sarah Fay joining us around the campfire. Sarah, it is so good to have you here. Thank you.
[00:01:21] Speaker A: It's fun to be here.
[00:01:23] Speaker C: So first, why don't you just tell us a little bit about yourself, your background, and. And please include one fun fact.
[00:01:30] Speaker A: Okay. Well, my name is Sarah Fay. I live in Arvada, Colorado.
I have two children, two adult children. We've lived here for. Well, I've lived in Colorado for 30 years now.
Raised our family here, and just, you know, live kind of a pretty normal suburban life, happy, have a great husband, have few beautiful children.
And up until about nine years ago, I was really healthy. I'm very active and, like, I used to run a lot and exercise all the time.
I grew up in Kansas.
I'm a hippie at heart.
All right, I love that.
And I guess, like, a fun fact about me is after, like, a long time of really trying, I finally can say, I don't like sushi. I've tried it. I used to say I liked it, and I. I can eat it, but I honestly don't like it.
[00:02:33] Speaker C: So my last name is also Faye, for those of you who don't know. So, Sarah, we really are sisters.
[00:02:38] Speaker A: We are.
[00:02:39] Speaker C: Because I'm with. I'm with you on that. Okay, so you alluded to it nine years ago. You got some shocking news. So what happened? Tell us about your diagnosis story, when, how surgery, all of that kind of stuff.
[00:02:52] Speaker A: Okay, so summer of 2015, I was 48 years old, and in about. In July, ish. I just kind of started having some abdominal pain. Nothing major. I just thought, you know, I don't know, just maybe I'm constipated or I just kind of have this little pain in my belly area. And so didn't really think about it.
Had a doctor's appointment scheduled for the end of August, and I was like, oh, I'll just ask my doctor about it then. And so I waited and then went to the doctor, and he felt around and, like, felt something kind of hard in my abdomen. So he's like, let's get a CAT scan. And so.
Or actually we did an ultrasound to begin with. And so, like, that day, I went over, had an ultrasound, and the ultrasound tech was like, like, oh, my gosh, this is bad.
She didn't know what it was, but she thought it'd be like an enlarged spleen or something. And it was like, three times. Whatever it was that she saw was 9 centimeters. I think your spleen is 3 centimeters. So she's like, if it is your spleen, it's like, three times bigger than it should be. But anyway, so that kind of just started a series of tests over the next week.
And so I had a CAT scan and then a PET scan and met with a surgeon because there was definitely something in there. But at that point, no one was really identifying if it was cancer or not. And so I ended up going to Rocky Mountain Cancer center and met with a doctor there who was really, really good.
But he was not a sarcoma coma specialist. But he was the one that confirmed to me that it was cancer. Because up to that point, everything I had been hearing was like, it's inconclusive. We don't know. You know, it could be this, it could be that. But we probably should do surgery, but we should probably find out if it is cancer before we do search. So it's kind of a wishy washy.
And so once I found out it was cancer, it was a shock.
[00:05:01] Speaker C: Yeah.
[00:05:01] Speaker A: Because I really just thought, you know, it's just probably some weird thing. Some thing. But so then we had some really great friends that helped us get to the University of Colorado Health Care center. And they have a sarcoma center there. So it's a great facility here in Colorado. And so I met my sarcoma oncologist, Dr. Villalobos.
Um, gosh, I probably met him towards the end of September, because literally a week later, after I met him, I had surgery. And so my tumor had grown to £17.
[00:05:45] Speaker C: Oh, my gosh.
[00:05:47] Speaker A: My surgery date rolled around. So I had surgery on October 2nd and got out of the hospital on October 9th.
Then on October 16th, my mom passed away.
[00:06:03] Speaker C: Oh, God.
[00:06:04] Speaker A: And that was way harder than the cancer.
[00:06:09] Speaker C: Gosh.
[00:06:10] Speaker A: So that was just a very tumultuous time.
[00:06:14] Speaker C: Yeah.
During that time. Was it at that time. Now, I know I have this inside knowledge that you went through clinical trials. Was it during that time that the doctor recommended it or when did that come into play?
[00:06:29] Speaker A: Probably about two years in. So after my surgery, I started a chemo regime. It wasn't a trial it was aim. They call it the Red Devil, where you have to be admitted to the hospital for five days. So I did that starting in November of 2015 through February of 2016.
And then I also had a hysterectomy then in March of 2016, just because they did see some spots in my uterus. And oftentimes leiomyosarcoma starts in the uterus. Mine didn't, but we were like, we're gonna, you know, just be super safe and just take everything we possibly can. So, so then. So I had chemo and then hysterectomy, and then I did a couple other chemos after AIM because a year after my first surgery, the cancer was back, which is an unfortunate part of sarcoma is it's tricky, it's smart, and it, like, figures out the medicine and it tends to come back. Wow. So, so then in.
So then after my hysterectomy In November of 2016, I did gym tax. I did four cycles of gym tax, which, again, that was a clinical trial.
I didn't do my first clinical trial until I wanted to say it was about. It was 2018. Yeah. So prior to that, I had.
So I. I had my hysterectomy, and then I had another surgical resection after the gym tax to take tumor out.
The gym tax also caused, like, severe neuropathy for me in my hands and feet. So I had a couple broken bones during that time because neuropathy makes me very clumsy. And so I fell and broke my patella.
[00:08:40] Speaker C: Oh, gosh.
[00:08:41] Speaker A: So that was another surgery. And then I also fell and broke my upper femur.
So that's just, you know, one of the downsides of.
[00:08:51] Speaker C: Yeah, yeah.
[00:08:54] Speaker A: So let's see. So then I had a foundation one testing done in August of 2018, where they can identify.
It's a foundation that does genomic, like, gene testing.
[00:09:11] Speaker C: Oh, right, right.
[00:09:12] Speaker A: So. And it kind of finds, like, what genes you might have that are going, you know, awry.
[00:09:18] Speaker C: Yeah.
[00:09:19] Speaker A: And then they can match you up to different medicines where that, like, on trials show that, like, yes, this actually does really target melanoma. And this one is actually really targeting, you know, the. The genes and whatever the cells that we find in breast cancers. So after I had my foundation one testing, it was identified that I qualified for a study that I started or clinical trial in October of 2018.
The company was called Bio Atla, and it's a, you know, biochemical or bioengineering biomedical something company.
[00:10:05] Speaker C: Right.
[00:10:05] Speaker A: And it was a dose escalation study for Advanced solid tumors.
And so what the study involved was testing five different dosage levels.
And so that was an eight week study.
I did that.
I had CAT scans throughout the trial. I don't remember how often, maybe twice.
It was a long time ago, so it's kind of hard to remember.
And so you know what, I take that back. I am wrong. I started my first trial in 2017.
The. The Bio Atlas study was actually my second trial.
[00:10:58] Speaker C: Okay, so did they do that first trial when it came back? Basically. And you had to have that.
[00:11:03] Speaker A: Yes.
[00:11:03] Speaker C: Other surgery. Okay, yes.
[00:11:05] Speaker A: And that was. So that was called posa or I don't know the words, but that's okay. And that was a. I got that once a week.
That one went pretty good. I know, I know. I became very anemic though, and I had to have a couple blood transfusions.
I also had to monitor like my glucose levels with that one. So that would have been.
That was my first trial. So sorry about that. I had my dates done.
[00:11:36] Speaker C: No problem.
[00:11:37] Speaker A: Started October of 2017.
[00:11:40] Speaker C: So with that, I'm curious why they went. So you were originally diagnosed in 2016.
[00:11:45] Speaker A: So.
[00:11:45] Speaker C: So this is a year later, basically.
[00:11:48] Speaker A: Yeah.
[00:11:49] Speaker C: Had in their mind, was the cancer already outsmarting the normal chemos and so that's why they immediately went to trial.
[00:11:57] Speaker A: Okay, yes. And I had my doctor tell me, you know, on more than one occasion, like, I have several things up my sleeve. So it's like, we're going to try this and if it doesn't work, there's this trial out there that we're going to see if you qualify for.
Okay. And even also, like, if the trial doesn't work, there are actually some drugs that have already been approved that also know. We know that they may work on your cancer, so we can do that too. So they always were giving me continual hope, like, if this doesn't work, I've got plan B, C and D lined up.
[00:12:32] Speaker C: Did that ease any concerns you had about being in a trial?
[00:12:37] Speaker A: Oh, gosh, yes. 100%. Yeah.
[00:12:42] Speaker C: Today's episode is brought to you by Lilly. Cancer changes lives. Clinical trials can change cancer. To learn more, visit cancerclinicaltrials.lilly.com that's cancerclinicaltrials.lilly l I l l y.com I would imagine. And it sounds like your doctor was the one who was all over this. I mean, he was the one who was bringing it up. Okay.
[00:13:08] Speaker A: Yes. I've had incredible medical care and I put a full faith and trust in them. So, yeah, they're the ones, they're how I found out about the studies. And then they do all the work to get me set up. And there's clinical study directors on staff that, you know, would give me calendars two months out of, like, these are the days that you're going to have your infusion. These are the days that you're going to have your scans.
So, yeah, it's very well organized. And honestly, all I had to do was show up.
[00:13:41] Speaker C: Wow, that's great. I mean, I'm sorry you had to show up, but I'm glad it was so well organized.
[00:13:45] Speaker A: Yes.
[00:13:46] Speaker C: So, okay, so your first one was 2017, then you had another one in 2018.
[00:13:50] Speaker A: Yes.
[00:13:51] Speaker C: Any more after that?
Yes, you have had a few. Wow.
[00:13:56] Speaker A: I have, I have, yes.
I mean, even, like, I was once on a targeted therapy, and that was photriants. I don't think that was a trial. But so my most recent one, my most recent trial that I had was it started in April of 21, 2021. It was an immunotherapy trial.
I did that every two weeks for almost two years.
And it started out really, really good. And.
[00:14:35] Speaker C: You say really good in that it was working?
[00:14:38] Speaker A: Yes. My scans would always show some decrease in the size of the tumors, and I had multiple tumors and lesions throughout my abdominal area.
But, yes, through that immunotherapy trial, they could see there was some progress.
One thing that was interesting, though, they also re diagnosed me with liposarcoma instead of leiomyosarcoma. So my original diagnosis was leiomyosarcoma.
One reason why they were so, so excited about how I was responding to this trial is that they hadn't really seen it working in leiomyosarcomas as much as.
But after the pathologist, like, was reviewing my records, determined that my cancer was more in line with liposarcoma, so which is also a soft tissue coma, soft tissue sarcoma.
And that kind of like, I was like, wait, what?
Like, it's not what I thought it was for the last eight years. But the other thing that reassured me on that is my doctor's, like, we still would have done the exact same thing. Like, you still would have had the surgeries. We would have done all the exact same chemos. And so, like, we were super excited with the response you were having when we thought it was like. Or when we thought it was leiomyosarcoma. We're still just as excited with lipo, even though they had already. They knew that it had worked on some liposarcomas so. So that was one kind of interesting thing. But, yeah, so I did that for almost two years, and it kind of did stop. It just became stable for a while. So I remember that probably the last maybe three or four months, my scans really just were stable. There was still a tumor there, and in my head, I was like, I just want it out. And so, you know, I'm coming back every two weeks and getting this infusion, and nothing's changed. So, yeah, I'm really ready for surgery now. And that's when they all agreed that surgeon who's done all of my surgeries at uch, and then the medical team agreed, like, yeah, okay, it's time. So.
[00:16:59] Speaker C: And that was when?
[00:17:01] Speaker A: January of 23.
[00:17:05] Speaker C: So from January of 23 until now, have you been on any kind of trials? No surgeries?
Yay.
[00:17:14] Speaker A: Nothing? Yes. I get scanned every three months, but, yeah, so I am almost two years, Ned, which is amazing.
[00:17:24] Speaker C: That's amazing.
So I know you said that having so many options kind of made it easier, but did you have hesitations and concerns at any stage along the way with these trials?
What was kind of the mental and emotional know, going into these things?
[00:17:41] Speaker A: Like I said, I. I have such trust in my doctors that I.
Anything they would bring to me, I'd be like, yeah, let's do it. You know, I mean, they're not going to do something that they don't think I'm able to handle or they don't think is going to be worthwhile.
[00:18:01] Speaker C: So you were as much as you could be at peace in the situation, you were at peace? Yes, that's right.
[00:18:08] Speaker A: Yes.
[00:18:11] Speaker C: Now, I'm going to go back to something you said earlier, which was that at the same time, your first diagnosis, your mom died.
[00:18:18] Speaker A: Yes.
[00:18:18] Speaker C: I mean, that.
That is just a huge weight on top of everything else.
How did you get through that time period?
[00:18:30] Speaker A: Well, it was hard, definitely. But, you know, I have always kind of had the mindset, like, just push through.
A friend mentioned to me, like, you know, look for the joy and the chaos and that even though it was hard to see joy.
[00:18:50] Speaker C: Yeah.
[00:18:50] Speaker A: That's what I did try to focus on is like, okay, I'm going to be positive. I'm going to push through. The only way out of this mess is just to keep pushing through. I mean, I was mourning, I was grieving. My mom was my best friend. So not having her here to kind of walk through this with me was really, really hard.
But I. I felt her anyhow, even though she was here physically. So I just pushed through, and I had a great support group.
[00:19:23] Speaker C: Wow.
At the same time, you're a mom. How. How old were your kids when you were first diagnosed?
[00:19:29] Speaker A: My youngest was 13, and my oldest was 15, so seventh grade and ninth grade.
[00:19:37] Speaker C: And how did you and your husband go about telling them? How honest were you?
Did you wait till you had certain information, like, how did you navigate that whole process?
[00:19:49] Speaker A: Yeah, and that was a little tricky, too. I mean, we. They knew from the get go. Like, once I found out it was cancer.
Yes. We sat down and. And talked to our kids, and I remember one of my daughters asking, like, well, is it life threatening?
And my answer was, life is life threatening. You know, like, I don't know. I. It could be. It could be. I don't know. You know, this is. We're walking into a lot of unknowns here, but life is life threatening, so we're not going to focus on that. We're just going to do what needs to be done and hope for the best.
[00:20:28] Speaker C: Gosh. Is there anything that you learned going through your mom's death that has shaped your own outlook as a mother and even particularly in this situation with going through cancer and navigating it with your kids?
[00:20:44] Speaker A: Yes, thank you for asking that.
That's a really good question.
Honestly, I think I just want to be an inspiration. I mean, my mom was an inspiration to me in so many ways through so many different phases of my life, and I want to be that for my kids. And I'm not going to lie. You know, it's scary thinking I may not be here for my kids in some critical times, but that they may really need me. But I also know that they have a strong foundation and, you know, inspiration can live on beyond the person.
[00:21:23] Speaker C: Yeah. And your kids now are in their 20s, I'm guessing, right?
[00:21:27] Speaker A: Yeah. My oldest is 24.
He's graduated from college and has a job and living on her own and doing really well.
And then my youngest is a senior in college, so she'll graduate in May.
[00:21:43] Speaker C: Is there anything from that whole experience with going through it with your kids?
I mean, any age is hard, but teenage years, I mean, that's tough, you know, Is there anything that you've learned that you would want to share with another survivor who's a mom or a parent?
[00:22:00] Speaker A: I think my biggest thing is you just got to keep on pushing through. I mean, a lot changed with cancer, and it. You know, it came into our life and it disrupted a lot, but we also just kept all the wheels turning. And, you know, my kids kept with all of their activities and sports and school and friends and life, it's like cancer just became one more thing that we kind of had to deal with. But yeah, I really didn't want to give it that much energy, so I was like, okay, I'll, I'll do what I have to do, but really what I want to do is go to my kids volleyball game this weekend, you know?
[00:22:37] Speaker C: Right.
So as much as possible, kept life as normal as it could be.
[00:22:42] Speaker A: Yes.
[00:22:42] Speaker C: With this additional. Oh, here's cancer we have.
Right.
[00:22:47] Speaker A: Exactly. Wow.
[00:22:49] Speaker C: Is there anything else that you would share, not just about being a mom, but about being a survivor? Going through the situation that you would want to share with someone listening, it's.
[00:22:58] Speaker A: Just a very surreal experience. I still sometimes can't believe that I've had cancer and that I dealt with all of this nonsense for almost 10 years.
And so I guess really my biggest takeaway is honestly, you just never know what life is going to throw at you. And I think I learned a lot that I can get through things.
I love that phrase, the only way out is through. And so, okay, I'll push through. I don't know what I'm doing and I hope it turns out, but I'll give it a try.
[00:23:35] Speaker C: Well, and you're still here and I just. It is so cool that you've been at least Ned, for what, almost two years?
[00:23:44] Speaker A: Almost two years.
[00:23:45] Speaker C: I mean, that's amazing. That is amazing.
[00:23:47] Speaker A: Yes.
[00:23:48] Speaker C: Well, one more question for you. Marshmallows over a campfire. Slow and steady or flame and crispy?
[00:23:55] Speaker A: Slow and steady for sure.
[00:23:58] Speaker C: Sarah Fay. We are sisters. That is exactly what I would answer.
[00:24:02] Speaker A: Hey, Yay. No sushi.
[00:24:05] Speaker C: No sushi. And slow, steady marshmallows.
Thank you so much for joining us. It has been a pleasure. Thank you for talking to us about the clinical trials and kids and your mom and the whole thing. It has been a real pleasure.
[00:24:21] Speaker A: Yes, thank you. I appreciate it so much.
[00:24:25] Speaker C: Until the next time we gather around the campfire, keep living Beyond Cancer.
[00:24:35] 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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[00:25:13] Speaker A: I mean, Bright and woke we will rise once again.
