1 00:00:00,531 --> 00:00:05,211 Elsa: Welcome to Care Partners Compass Navigating CRC. My name 2 00:00:05,211 --> 00:00:08,961 is Elsa Lankford. I am the care partner to my incredible wife, 3 00:00:08,961 --> 00:00:12,591 Kristine, who has stage four colorectal cancer. 4 00:00:46,012 --> 00:00:49,462 This episode is going to be about chemo from a Stage four 5 00:00:49,462 --> 00:00:52,721 Care Partners perspective. I might end up doing more than one 6 00:00:52,721 --> 00:00:56,231 episode about chemo because what I'm concentrating in this 7 00:00:56,231 --> 00:01:03,007 episode is about the first chemo line that Kristine was on. I 8 00:01:03,037 --> 00:01:08,380 recorded this episode already for an hour in bits and pieces. 9 00:01:08,517 --> 00:01:12,117 I had Kristine listen to it because she has final editing 10 00:01:12,117 --> 00:01:18,772 rights and she said that I was being very informational but 11 00:01:18,772 --> 00:01:22,353 slow and boring, and that it wasn't, from my perspective. 12 00:01:22,721 --> 00:01:25,181 that's humbling. 13 00:01:27,311 --> 00:01:28,301 So I'm doing it again 14 00:01:30,199 --> 00:01:33,589 I think each each person is different and they're going to 15 00:01:33,589 --> 00:01:38,539 handle the chemo part of the cancer journey differently. 16 00:01:39,192 --> 00:01:42,042 Elsa: This is what a typical chemo infusion day would look 17 00:01:42,042 --> 00:01:45,531 like. We would wake up early because bloodwork would start at 18 00:01:45,531 --> 00:01:51,635 about seven, 730. I would make breakfast or help with breakfast. 19 00:01:51,635 --> 00:01:55,803 If she wanted to cook, I would get the cold bags ready with all 20 00:01:55,803 --> 00:02:00,090 the icing supplies, when When she was on the triplet chemo, 21 00:02:00,215 --> 00:02:03,949 which is for FOLFOXIRI, She needed to have icing supplies 22 00:02:04,031 --> 00:02:08,864 that made it less likely for her to be sensitive to the cold. And 23 00:02:08,864 --> 00:02:12,033 also they found out through studies that there's a chance 24 00:02:12,033 --> 00:02:17,122 that it lessens the possibility of getting neuropathy. So she 25 00:02:17,122 --> 00:02:22,021 would have these icy gloves and icy slippers and multiple pairs 26 00:02:22,021 --> 00:02:28,346 of them. We'd get the supplies packed up, get some some snacks 27 00:02:28,880 --> 00:02:35,916 and then in the car we'd always listen to a very silly podcast. 28 00:02:36,338 --> 00:02:37,658 This was a way to kind of 29 00:02:38,287 --> 00:02:43,099 keep of humor while, you know, undergoing something that nobody 30 00:02:43,099 --> 00:02:49,908 wants to do. Part of the day of the chemo infusion would be 31 00:02:49,908 --> 00:02:56,598 focusing on the routine because that routine made things, I 32 00:02:56,598 --> 00:03:02,365 think, a little less scary. She would get her bloodwork done and 33 00:03:02,365 --> 00:03:07,123 then we'd have 3 hours to walk around That was part of the 34 00:03:07,123 --> 00:03:11,608 chemo experience, was to eat breakfast at home and then walk 35 00:03:11,608 --> 00:03:17,210 around and get a second breakfast. Some people fast for 36 00:03:17,210 --> 00:03:21,424 chemo, and Kristine did the exact opposite. Part of it was 37 00:03:21,424 --> 00:03:24,793 really helpful because she needed to gain weight she needed 38 00:03:24,793 --> 00:03:28,102 additional calories and and protein. And that worked for her. 39 00:03:28,503 --> 00:03:32,073 we'd walk all around, do some sightseeing, some shopping, 40 00:03:32,761 --> 00:03:35,281 Elsa: While we were out, the oncology nurse would call. 41 00:03:35,536 --> 00:03:39,616 There's two things that need to happen for the chemo infusion to 42 00:03:39,616 --> 00:03:44,171 be a go, and that is that the blood work numbers are okay and 43 00:03:44,421 --> 00:03:48,847 the oncology nurse has basically a checklist to make sure both 44 00:03:48,847 --> 00:03:54,277 about what side effects the patient is experiencing and also 45 00:03:54,277 --> 00:03:58,629 that that there's not a safety risk in giving the chemo. And 46 00:03:58,629 --> 00:04:01,239 that information gets passed on to the oncologist. 47 00:04:03,335 --> 00:04:11,268 The day then would be bloodwork, three hour gap infusion for five 48 00:04:11,268 --> 00:04:12,138 6 hours. 49 00:04:13,955 --> 00:04:18,788 Elsa: During chemo, she would make sure that we did some 50 00:04:18,788 --> 00:04:22,046 dancing. again, this is not something that you're going to 51 00:04:22,046 --> 00:04:26,546 hear from most people during their chemo experience. But that 52 00:04:26,546 --> 00:04:30,865 was really important to her. So the reason for the dancing was 53 00:04:31,015 --> 00:04:36,420 was kind of twofold. On was that she wanted to make sure that 54 00:04:36,420 --> 00:04:40,748 even on the infusion days, she was getting her 15,000 steps. So 55 00:04:40,748 --> 00:04:44,588 our walk in the morning would usually be about 10,000 steps. 56 00:04:45,428 --> 00:04:51,008 And then there'd be usually, you know, 5000 dancing steps. 57 00:04:52,256 --> 00:04:55,644 Elsa: Because the dancing happened after the Oxaliplatin 58 00:04:55,764 --> 00:04:59,394 infusion, where she had the icing supplies on, it would let 59 00:04:59,394 --> 00:05:06,301 her warm up. I needed to make sure that during the Oxaliplatin 60 00:05:06,342 --> 00:05:10,567 infusion that she had her icing supplies going. as a care 61 00:05:10,567 --> 00:05:13,606 partner, that made me feel like I was doing something. And that 62 00:05:13,606 --> 00:05:17,464 was, I think, really helpful. And it also made the time go in 63 00:05:17,464 --> 00:05:23,366 the infusion chair a lot quicker because Oxaliplatin was a two 64 00:05:23,366 --> 00:05:28,543 hour infusion and I would need to just make sure that 65 00:05:28,543 --> 00:05:34,017 everything was still cold, switch them out when needed. The 66 00:05:34,017 --> 00:05:39,609 very first time that Kristine iced for Oxaliplatin, she was 67 00:05:39,609 --> 00:05:44,889 too regimented in her approach and ended up getting a little 68 00:05:44,889 --> 00:05:51,872 bit of frostbite. So a hot tip, a cold tip is to make sure that 69 00:05:51,872 --> 00:05:56,920 your loved ones take their hands out of the icing supplies, you 70 00:05:56,920 --> 00:06:00,550 know, every 15 minutes or so to make sure that that doesn't 71 00:06:00,550 --> 00:06:04,152 happen. I was privileged enough to be able to have enough sick 72 00:06:04,152 --> 00:06:09,253 time to take off. Her infusion days were Thursdays, so I would 73 00:06:09,253 --> 00:06:13,325 take off work Thursdays and Fridays. And that way I could be 74 00:06:13,325 --> 00:06:18,755 there during her chemo infusion and I could be there while she 75 00:06:18,755 --> 00:06:26,032 still had her 5FU pack on if you're new to CRC then 5FU is 76 00:06:26,032 --> 00:06:32,760 one of the chemo drugs you basically have to wear it for 46 77 00:06:32,760 --> 00:06:39,141 hours. it doesn't get infused so much during the infusion, but 78 00:06:39,321 --> 00:06:44,342 your loved one will have it in like a fanny pack for 46 hours 79 00:06:44,342 --> 00:06:48,212 after the infusion. So that means that they come home with 80 00:06:48,572 --> 00:06:55,310 the 5FU. Some people with cancer may not want their care partner 81 00:06:55,310 --> 00:06:58,910 to go with them to chemo or they may not want them to stay home 82 00:06:58,910 --> 00:07:04,186 with them the next day. That was something that worked for us. So 83 00:07:04,186 --> 00:07:08,151 everything that I did as a care partner was, you know, checking 84 00:07:08,151 --> 00:07:11,391 with Kristine first and making sure that that was what she 85 00:07:11,391 --> 00:07:11,871 wanted. 86 00:07:14,816 --> 00:07:21,976 Kristine would have her 5FU pack and I would drive home. The 87 00:07:21,976 --> 00:07:26,476 irinotecan which was the last chemo drug to be infused, would 88 00:07:26,476 --> 00:07:29,446 make her eyes really sensitive to light.So she would put on 89 00:07:29,446 --> 00:07:35,425 her sunglasses. I would drive home For probably about a year. 90 00:07:35,545 --> 00:07:39,854 Our friend Jill would come over every other Thursday. every 91 00:07:39,854 --> 00:07:45,134 chemo day, she would either pick up dinner, make dinner, and we'd 92 00:07:45,134 --> 00:07:49,364 eat together. And then after dinner Kristine would always 93 00:07:49,364 --> 00:07:54,014 have just a little bit of ice cream. That was for a couple of 94 00:07:54,014 --> 00:07:58,574 reasons. One, because she deserved it and another because 95 00:07:58,574 --> 00:08:02,084 it was a way to make sure that she didn't have cold sensitivity. 96 00:08:04,103 --> 00:08:08,453 Cancer has a way of making you feel very isolated. And 97 00:08:08,453 --> 00:08:13,868 especially when you couple that with COVID. It felt like we had 98 00:08:13,868 --> 00:08:17,809 an extra layer of support, which was such a nice feeling. 99 00:08:20,007 --> 00:08:28,324 Elsa: The 5FU would run for 46 hours two after the 5FU was done 100 00:08:28,575 --> 00:08:35,268 the first couple of times a home nurse would come and remove the 101 00:08:35,268 --> 00:08:38,954 needle from Kristine's port. Take the the empty chemo pack 102 00:08:38,954 --> 00:08:46,240 basically off. After those first few times I had to do that. the 103 00:08:46,840 --> 00:08:52,135 end to the chemo infusion was d accessing her port removing the 104 00:08:52,135 --> 00:08:58,195 needle from her port and, you know, properly disposing of 105 00:08:58,195 --> 00:08:58,735 everything 106 00:09:01,047 --> 00:09:05,037 just like there was a routine about everything else. About 107 00:09:05,037 --> 00:09:10,245 chemo. There was a routine about stopping chemo. We would watch 108 00:09:10,245 --> 00:09:17,865 the video about how to de-access the port. I would lay everything 109 00:09:17,865 --> 00:09:22,195 out on the table. And there was a set of steps that would happen 110 00:09:22,758 --> 00:09:28,292 to make it end. As a care partner. 111 00:09:30,272 --> 00:09:37,870 That part was, you know, always stressful. The first time I had 112 00:09:37,870 --> 00:09:44,530 to do that on my own.I was really scared. I was scared that 113 00:09:44,530 --> 00:09:47,230 I was going to hurt her as scared I was going to mess up. 114 00:09:48,100 --> 00:09:54,820 But it was fine. The second time I got, I think, a little too 115 00:09:54,820 --> 00:09:55,660 confident 116 00:09:57,672 --> 00:10:04,352 and I ended up hurting her, taking the the needle out when 117 00:10:04,652 --> 00:10:10,720 we went to her next infusion,I asked if I could practice. I 118 00:10:10,720 --> 00:10:16,456 remember they gave me a glovebox and a needle and I was able to 119 00:10:17,056 --> 00:10:21,370 to practice taking it out multiple times. So that way it 120 00:10:21,370 --> 00:10:26,616 made me feel like I could do better because I hated that, you 121 00:10:26,616 --> 00:10:31,227 know, I was trying to help. And then I hurt her. I had a little 122 00:10:31,403 --> 00:10:35,633 mantra about how to remove the needle, which now I can't even 123 00:10:35,633 --> 00:10:39,938 remember. it was something that we would say together, and it 124 00:10:39,948 --> 00:10:47,495 made the process. less stressful, both of us were so happy when 125 00:10:47,735 --> 00:10:49,836 that needle was out. 126 00:10:54,978 --> 00:11:00,168 Elsa: So with chemo, there is what's called neoadjuvant chemo. 127 00:11:00,778 --> 00:11:06,238 neoadjuvant means that you get chemo before the surgery, and 128 00:11:06,238 --> 00:11:11,368 adjuvant means that you get chemo after the surgery. So in 129 00:11:11,368 --> 00:11:15,853 Kristine's case, when we first talked with the oncologist, you 130 00:11:15,853 --> 00:11:19,903 know, the hope was that the chemo would be effective and 131 00:11:19,903 --> 00:11:24,518 that she could get to surgery. She would then also need chemo 132 00:11:24,518 --> 00:11:30,128 after surgery and would probably need two surgeries, one for her 133 00:11:30,128 --> 00:11:37,633 liver and lymph and another for her colon and lymph. that was so 134 00:11:37,633 --> 00:11:41,563 that was the initial plan. Typically with the first line 135 00:11:41,563 --> 00:11:47,293 chemo's and depending on the person, the first line could be 136 00:11:47,293 --> 00:11:52,313 FOLFOX. It could be FOLFIRI, it could be FOLFOXIRI. There might 137 00:11:52,313 --> 00:11:56,953 be other things added on like Avastin or Vectibix. 138 00:11:58,933 --> 00:12:05,498 So in her case, it was FOLFOXIRI, which is 5FU. Plus Oxaliplatin 139 00:12:05,798 --> 00:12:11,318 plus Irinotecan plus Avastin. So it was kind of almost everything 140 00:12:11,318 --> 00:12:14,738 all put together a very aggressive chemo regimen. 141 00:12:16,217 --> 00:12:20,718 Elsa: the initial thought was 12 rounds of FOLFOXIRI checking, 142 00:12:20,430 --> 00:12:23,220 know, somewhere in between to see how things were doing, 143 00:12:23,629 --> 00:12:26,796 because that's the thing with cancer you will never know 144 00:12:26,796 --> 00:12:32,744 enough about what is happening with the cancer So there's CEA, 145 00:12:32,744 --> 00:12:37,341 which is a tumor marker. There is, circulating tumor DNA 146 00:12:37,341 --> 00:12:43,251 testing that ctdna that looks for tumor cells that are in the 147 00:12:43,251 --> 00:12:48,327 blood. And they base that on an initial tumor sample and then 148 00:12:48,327 --> 00:12:52,467 there are scans. scans are typically every 2 to 3 months. 149 00:12:52,737 --> 00:12:56,727 CEA is typically, you know, might be every two weeks, it 150 00:12:56,727 --> 00:13:01,713 might be every four weeks. circulating tumor DNA. ctDNA can 151 00:13:01,713 --> 00:13:05,557 be, you know, anywhere from every four weeks to every three 152 00:13:05,557 --> 00:13:11,687 months. As Kristine was doing chemo, we had very little idea 153 00:13:12,587 --> 00:13:16,825 of what was happening. the ways that we knew that something was 154 00:13:16,825 --> 00:13:20,951 working was that after she started chemo, she couldn't feel 155 00:13:20,951 --> 00:13:26,909 that bump on her stomach anymore. S became more hungry. And the 156 00:13:26,909 --> 00:13:32,249 oncologist thought that because her liver tumor was so big, it 157 00:13:32,249 --> 00:13:36,269 was probably squishing her stomach and made her stomach 158 00:13:36,269 --> 00:13:41,986 smaller. So as the liver tumor was shrinking because of the 159 00:13:41,986 --> 00:13:48,149 chemo, it allowed her stomach to be able to expand. We were 160 00:13:48,149 --> 00:13:54,899 getting CEA numbers, which started off really high, 5500, 161 00:13:56,279 --> 00:14:01,319 and that, you know, went down So CEA should be three or less. 162 00:14:03,008 --> 00:14:10,478 the CTDNA she had that started before chemo and that started at 163 00:14:10,478 --> 00:14:14,637 like over 10,000, which should be zero. So these numbers are 164 00:14:14,637 --> 00:14:20,777 going down. She can no longer feel the tumor through her skin 165 00:14:21,767 --> 00:14:26,231 The scan is really the best way to know what's happening. And 166 00:14:26,681 --> 00:14:31,075 that's what she needed for the surgeons to decide to take her 167 00:14:31,075 --> 00:14:35,999 case So she had been diagnosed in July. She started chemo in 168 00:14:35,999 --> 00:14:41,698 August, November. Her was when she had, I believe, her first 169 00:14:42,178 --> 00:14:47,182 scan and that it was good. They were definitely seeing that 170 00:14:47,182 --> 00:14:51,877 everything was getting smaller, which was excellent. That is 171 00:14:51,877 --> 00:14:54,272 when we started to talk to the surgeons. 172 00:14:55,722 --> 00:14:58,902 Elsa: So we were incredibly fortunate to be at a cancer 173 00:14:58,902 --> 00:15:03,342 center where surgeons were involved from the get go. They 174 00:15:03,462 --> 00:15:07,237 were part of the team. We didn't talk to them before that, but 175 00:15:07,237 --> 00:15:12,007 her oncologist was. So I'm just going to say here and I say this 176 00:15:12,307 --> 00:15:19,282 a lot throughout this podcast. It It was only when I started to 177 00:15:19,702 --> 00:15:24,142 get involved with online CRC communities that I started to 178 00:15:24,142 --> 00:15:28,938 realize how fortunate we were that surgeons were interested in 179 00:15:28,938 --> 00:15:32,932 her case, even though it was super complicated. getting 180 00:15:32,932 --> 00:15:36,193 second opinions and third opinions and fourth opinions is 181 00:15:36,193 --> 00:15:40,843 so important. Getting to talk to a surgeon, not just an 182 00:15:40,843 --> 00:15:46,099 oncologist, but a surgeon is crucial, particularly if your 183 00:15:46,099 --> 00:15:51,698 loved one has liver mets or peritoneal mets, to be able to 184 00:15:51,698 --> 00:15:55,142 talk to a surgeon can really make the difference. 185 00:15:57,093 --> 00:16:02,389 So I'm trying to remember back to the first day of chemo I'll 186 00:16:02,389 --> 00:16:07,734 keep it short because my memory is really bad. I knew so little 187 00:16:08,154 --> 00:16:14,446 about physically,where we were going, what the experience was 188 00:16:14,446 --> 00:16:22,001 going to be like and started off scared, really scared for her 189 00:16:23,866 --> 00:16:25,366 feeling really helpless. 190 00:16:27,130 --> 00:16:31,360 Elsa: Kristine was very lucky because even though she had all 191 00:16:31,360 --> 00:16:35,227 these chemos put together, she had very few side effects. The 192 00:16:35,227 --> 00:16:40,057 main side effect while she was getting the chemo was fatigue. 193 00:16:40,654 --> 00:16:45,817 And then a longer term side effect was like a chemo brain 194 00:16:45,817 --> 00:16:50,807 fog. Some people have a lot more side effects. They have GI 195 00:16:50,807 --> 00:16:56,015 issues, they have nausea, diarrhea. Hair loss. There can 196 00:16:56,015 --> 00:17:00,476 be really a lot of different side effects. you know, the 197 00:17:00,476 --> 00:17:04,826 thing of being a care partner is you can try to provide, you know, 198 00:17:04,826 --> 00:17:11,461 everything. But I have found that doesn't mean that you don't 199 00:17:11,461 --> 00:17:16,771 feel helpless. you can do is support your loved one in every 200 00:17:16,771 --> 00:17:19,711 way that you can. And when you're going into something 201 00:17:19,711 --> 00:17:24,031 completely unknown, like chemo for the first time, because I 202 00:17:24,031 --> 00:17:28,653 hadn't gotten into any online communities early. And I think 203 00:17:29,014 --> 00:17:34,016 in one way that was better because I didn't have any 204 00:17:34,016 --> 00:17:39,056 expectations. I was just there to make sure that whatever I 205 00:17:39,056 --> 00:17:43,928 could provide for Kristine, that I would. really all about just 206 00:17:43,928 --> 00:17:46,757 doing anything that you can to make them feel comfortable, to 207 00:17:46,757 --> 00:17:51,436 make sure that they know that you're there for them. That's 208 00:17:51,616 --> 00:17:53,056 what being a care partner is about. 209 00:17:56,156 --> 00:17:58,646 Track 2: Thank you for joining me for this episode of Care 210 00:17:58,646 --> 00:18:04,106 Partners Compass: Navigating CRC. Please listen up for the next 211 00:18:04,106 --> 00:18:08,246 episode, which will come out next week. If you subscribe to 212 00:18:08,246 --> 00:18:11,066 the podcast on your favorite podcast app, you will know 213 00:18:11,066 --> 00:18:15,026 exactly when the next episode comes out. I hope that you'll 214 00:18:15,026 --> 00:18:18,956 share the podcast with your friends and family. The 215 00:18:18,956 --> 00:18:23,426 transcript of Care Partners Compass: Navigating CRC and 216 00:18:23,426 --> 00:18:26,336 additional links can be found on our website 217 00:18:26,996 --> 00:18:31,036 Carepartnerscompass. 218 00:18:31,036 --> 00:18:33,156 transistor.