S1Ep5 Chemo Part 2 - EGFR Inhibitors: Rash and Resilience

Welcome to the fifth episode of Care Partner's Compass: Navigating CRC with the 2nd episode of chemo.

This episode is what happened after the 1st pivot (Episode 4) and 3 liver mets popped back up and had to be dealt with using FOLFIRI and EGFR inhibitors (specifically panitumimab or Vectibix). Supporting your loved one while they are on chemo, especially one with such visible side effects, can be challenging.

Full transcription can be found on the website (http://carepartnerscompass.transistor.fm)

Host, producer/editor, and composer: Elsa Lankford


Tina - thank you so much again for all your help. Getting your feedback is so helpful.

And to Kristine (now she knows that I put a little message for her in the podcast info), I love you so much. I'm not being very creative with this, I just love you more than anything. 

Please remember to share, subscribe, like, and rate the podcast.

Helpful links related to this episode:

• Earth Wind and Fire's September song - we played this a lot on September 21st 2022, and September 21st 2023 as well.
• What's Next - Kristine's Spotify playlist for the first pivot. She creates a new playlist for each new part of this cancer journey. I had this last time, but these songs were the soundtrack of these 10 rounds of chemo, including dancing in the infusion room, and dance parties at home.
• NCI Cancer Centers - for stage 4 cancer, if you are in the US you will want to at least get a second or third opinion, if not have your care go through a NCI center.

• (01:54) - Chemo ideally to shrink stage 4 tumors as part of a plan that needs more options and opinions
• (02:53) - Kristine's first chemo line
• (03:45) - EGFR inhibitor intro
• (05:23) - Kristine's EGFR side effects were very visible
• (09:01) - Going back to chemo after a pivot
• (09:56) - EGFR side effects as a care partner
• (11:19) - Looking into other liver procedures and options
• (12:18) - The good effects of this chemo combo
• (13:58) - Proton power
• (15:21) - Having the information is so important

Creators & Guests

Host

Elsa Lankford

I'm the host of Care Partner's Compass: Navigating CRC, a patient advocate for colorectal cancer, and a care partner to my incredible wife Kristine. I am an artist, composer, educator, and podcaster. I'm a professor in the Electronic Media and Film Department at Towson University.

What is Care Partners Compass: Navigating CRC?

A podcast for care partners, cancer patients, and anybody who knows or loves somebody with cancer, particularly colorectal cancer (CRC). Care Partners Compass is told through the lens of a Stage 4 CRC care partner with occasional guests.

Season 1 will be primarily from my personal experience as a stage 4 CRC care partner. Topics will include diagnosis, biomarkers, clinical trials, second opinions, finding hope and joy, and more.

The podcast trailer is out now. Please listen and share widely.

Logo design: Kristine Dunkerton

Episodes will be dropping in March 2024 - Colorectal Cancer Awareness Month.

If you are 45 and older, or are any age and are experiencing anemia, unexplained weight loss, or other symptoms, please schedule your colonoscopy.

Disclaimer:
This podcast and its content is for entertainment purposes only. The views and opinions expressed by any hosts or guests on this podcast are their own personal opinions.

Reference to any specific product or entity does not constitute an endorsement or recommendation.

This podcast does not contain medical or legal advice. Please consult your medical professional about any medical questions or concerns.

S1Ep5 - Chemo - EGFR Inhibitors: Rash and Resilience
Lankford

Elsa 0:01
Welcome to Care Partners Compass Navigating CRC. My name is Elsa Lankford. I am the care partner to my incredible wife, Kristine, who has stage four colorectal cancer. As a disclaimer, this podcast and its content is for entertainment purposes only. The views and opinions expressed by any hosts or guests on this podcast are their own personal opinions. Reference to any specific product or entity does not constitute an endorsement or recommendation. This podcast does not contain medical or legal advice. Please consult your medical professional about any medical questions or concerns.

Elsa 0:47
With stage four colorectal cancer, there's almost always going to be chemo first. And that's why the second episode of this podcast was about chemo, because Kristine needed chemo to be able to shrink her liver tumors, to hopefully get her to surgery. Which spoiler alert she got to.

1:07
If you're MSS, which is microsatellite stable for colorectal cancer, that is like 95% of stage four. remember from the biomarkers episode, MSS means that immunotherapy needs something extra That even the experts aren't quite sure yet what it needs to make it work. And that's why there is a lot of clinical trials for stage four MSS patients to try different combinations of drugs or procedures with immunotherapy so that hopefully at some point the immune system can be boosted and work against the cancer instead of using chemo.

------ Chemo ideally to shrink stage 4 tumors as part of a plan that needs more options and opinions ------ 1:54

Elsa 1:54
Chemo is the main way to work on shrinking tumors in stage four. Ideally, chemo will shrink tumors and prevent new ones from starting and hopefully allow the stage four patients to be able to get to a procedure with a curative intent. Most stage four colorectal cancer patients need to get a lot of chemo. some because of where their Mets are, because of their biomarkers. Maybe because of how much disease they had when they were diagnosed. It's obviously up to the patient. But if your loved one is chemo for life, then it's worthwhile to get a second opinion or a third or fourth opinion even just to make sure that there aren't other options available. there are more options being tested through clinical trials. and this research is essential. But stage four colorectal cancer patients need more options right now.

------ Kristine's first chemo line ------ 2:54

Elsa 2:55
So Kristine's first line, chemo was FOLFOXIRI with Avastin. So again, that was 5FU, which is the chemo that you have to bring home with you in a pack and wear for 46 additional hours. So two additional days plus Oxaliplatin and Irinotecan Along with that. She also had Avastin, at least for six of the rounds. Avastin is a VEGFR inhibitor, which basically means it makes it difficult for tumors to create new blood sources. Kristine had had eight rounds of that first line chemo and then a liver surgery, which I'll talk more about later, and then four more and then a colon surgery. And then, as I mentioned in the pivot episode three new liver tumors popped back up.

------ EGFR inhibitor intro ------ 3:45

Elsa 3:45
because Kristine does not have KRAS, which is a a type of mutation that happens in about 40% of colorectal cancer patients. She had another option of a drug, A monoclonal antibody. added to chemo. her oncologist had always mentioned that he had an option in his back pocket to use if her cancer came back. And it turns out that that drug was an EGFR inhibitor because she does not have the KRAS mutation and because her tumor was in the sigmoid part of the colon, which is on the left side, that made her a candidate to use this very powerful drug that has a lot of side effects. So when we needed to pivot and her oncologist needed to come up with a plan, The plan was to use the same chemo as before minus the Oxaliplatin. She could always come back to that drug later. So FOLFIRI. 5FU and Irinotecan. And then add this EGFR inhibitor the EGFR inhibitors get a little complicated because right now there are two FDA approved EGFR inhibitors. And if you live in an area where there are mice, like anywhere around you, then you're going to likely use panitumimab, Which has a brand name of Vectibix. otherwise you'll use cetuximab, which has another name of Erbitux.

------ Kristine's EGFR side effects were very visible ------ 5:23

Elsa 5:23
So I listened to a lot of cancer podcasts, especially during peak COVID. after her diagnosis. Who knew there were so many podcasts about EGFR inhibitors. and I started to realize that in Europe and other countries, an EGFR inhibitor might be given in the first line, but in the U.S., they're not typically. And they mentioned the side effects. So there's like a rash. And it didn't really sink in until Kristine started the drug. then I realized why it's not always given in the first line, because these side effects are are visual. Colorectal cancer is not a visible disease. You can't tell that somebody has cancer by looking at them and the other chemo's would make Kristine tired. But you still couldn't look at her and see that she had cancer. And these chemo's didn't affect her from going outside. Some people get the rash from an EGFR inhibitor. Sometime they get the rash really bad. There's A prescribed antibiotic to help it not be as bad. I remember the first time that the rash started, she had the infusion. We had a little mini vacation slash second opinion up in New Jersey. And she started to get some pimples coming up on her face. I think in one sense, when she got the rash, we were probably a little bit relieved. And that's because the oncologist had said, and I'd read it multiple places, that if you get the rash, it's much more likely that it's working the way that I think about an EGFR inhibitor. And remember the disclaimer, I am not a doctor and I'm not positive that this is how it works. But the EGFR inhibitor I think of is going against The skin part of what makes up a tumor. And so as it's going after the tumor, It's also going to affect other parts of the skin as well. So with Kristine, it started off with rash, which looks like pimples on her face, and then it ended up the cuticles on her fingers and toes. and then it went to her fingertips and the tips of her toes

8:05
eyebrows. She started to get very luxurious eyebrows and crazy eyelashes, as well as other facial hair. these are very visible and uncomfortable side effects that your loved one will likely be going through. And of course, that's not to mention the side effects from the other drugs that she was getting. the fatigue, irinotecan would make her, you know, very sweaty, she was very light sensitive from the irinotecan. especially during the infusion. The fact that again, having the 5FU, that means that this is not just a one day infusion. This is really a three day infusion since this pack is still hooked up to her port.

------ Going back to chemo after a pivot ------ 9:01

Elsa 9:01
this episode isn't just about the chemo and the side effects and the care partnering that I needed to do to kind of help Kristine through this set of chemo. It's also about the fact that we both thought that she was done with chemo after having 12 rounds of really powerful chemo and a couple of surgeries and for some people that are stage 4, a small minority, but for some people, That's enough treatment and removal of cancer That there can be a long term NED. No evidence of disease with clean scans and cancer that's not detectable. this wasn't just about getting it a slightly different kind of chemo. This was about the fact that there was chemo period. this chemo, while incredibly powerful.

------ EGFR side effects as a care partner ------ 9:54

Elsa 9:54
It changed a number of things in her life that as a care partner, I tried to make it easier for her, but there's really only so much that you can do. So let me explain. A drug like Vectibix you have to have a steroid to make the rash not as bad.Both the Vectibix and that steroid made her sensitive to the sun. we got a lot of SPF clothing that helped protect her from the sun, got a lot of suntan lotion. Learned the best websites to see what the UV numbers were during the day and kind of planned outside walks and activities around that time, we got a SPF protected umbrella, got an SPF protected patio umbrella so that she could sit outside on the patio and not worry about the sun. We ended up with a lot of what I would call lotions and potions. a couple of prescribed, but a lot of them I remember going to the Walgreens and I felt like I was like buying out the lotion section multiple times is really hard when your loved one is going through something like that, you can try to help them.

------ Looking into other liver procedures and options ------ 11:17

Elsa 11:17
We were also looking into what could be done to her liver at her cancer center. Was surgery possible? Was ablation possible? Once again, her case came up to the tumor board. In this case, the liver tumor board. And it turned out that they weren't because of the locations. It just wasn't possible. So where what had been in our mind was always chemo gets you to a curative procedure. In this case, it became much more up in the air. we did also go to get some second opinions about what to do about these three new liver mets because the fear was if they came up, what else is going to come up in her liver and is her liver ever going to be clean? we looked at a pump and we looked into living donor liver transplant.

------ The good effects of this chemo combo ------ 12:16

Elsa 12:16
Fortunately, neither of those were necessary. some really amazing things were happening in terms of those little bits of information that we get. her CTDNA, her CEA, those are both going down to normal levels. and in retrospect, looking at the CEA and CTDNA numbers, they had never been normal. Her ctdna remember that started over 10,000 and it had gone down to zero. Her CEA, which started over 5500 and should be ideally under three, got under three. I remember the day the 21st of September, if you know, that song, the 21st of September, she had a PET scan and her liver was clear. she started the chemo in July and by September, it was clear. So while the drug was creating horrible side effects that impacted Kristine. It turned out that the drug was working.

13:30
She had ten rounds of it total

13:35
during that stretch of time.

13:38
so from July to November 2022, she had ten rounds of FOLFIRI and Vectibix and it cleaned up her liver. Just to make sure that her liver was clean since she couldn't do surgery or ablation.

------ Proton power ------ 13:56

Elsa 13:56
The tumor board suggested that she do proton radiation therapy to her liver. I'll probably talk about protons more and these other liver directed therapies in a separate podcast episode. But I can say that between November and December of 2022, she had 15 rounds of proton therapy using an old CT scan that showed where these tumors were since they were no longer visible. The reason that this was helpful was the same reason that surgery and ablation can be curative intent, and that is they don't just take out the tumor, but they take a little bit around the tumor to get rid of microscopic cells that might have created that tumor that I have learned are called cancer stem cells. This is what Kristine's oncologist had mentioned can be an issue. So in having the protons, knowing where these sites were, they were able to do very directed radiation to these three former spots in her liver. And hopefully this isn't jinxing it to say that when I'm recording this in March 2024, while cancer has still been problematic, her liver has remained clean.

------ Having the information is so important ------ 15:19

Elsa 15:19
And if we didn't have those little bits of information to let us know earlier that something was wrong Well, we did have those pieces of information. So if you are also a care partner, I hope that you also have access to this information. And if you don't, I'll put some links on the website including. If you're in the U.S., how to find the closest NCI, National Cancer Institute, designated cancer centers. They're all across the country. Because while doctors and oncologists have an immense amount of knowledge, they may not know everything about your loved one's type of cancer. They're also not going to be experts in every aspect of cancer. They're not surgeons. They're not interventional radiologists. And that's why going to a tumor board can be so helpful.

16:20
Because while this episode is about chemo, it's also about seeing if chemo can be part of the treatment plan and to know that it might be possible to have other options as well. Those options could be ablation, radiation surgery, clinical trials. It's important to keep an open mind about all of it and to gather information that might be part of what you do as a care partner, to be there as a sounding board, to be there to listen,

Narration 16:51
Thank you for joining

Elsa 16:52
and

Narration 16:52
me

Elsa 16:52
maybe

Narration 16:52
for this episode

Elsa 16:52
to help

Narration 16:53
of

Elsa 16:53
gather

Narration 16:53
Care Partners

Elsa 16:54
information

Narration 16:54
Compass:

Elsa 16:54
as well.

Narration 16:55
Navigating CRC. Please listen up for the next episode, which will come out next week. If you subscribe to the podcast on your favorite podcast app, you will know exactly when the next episode comes out.I hope that you'll share the podcast with your friends and family. The transcript of Care Partners Compass: Navigating CRC and additional links can be found on our website

17:26
Carepartnerscompass.

17:28
transistor.