S1Ep7 Immunotherapy Trial: No Regrets

04/12/24 • 19 min

Welcome to the seventh episode of Care Partner's Compass: Navigating CRC where I talk about my wife Kristine's very recent immunotherapy trial and all that it entailed.

This is the first episode where I talk about something that is so recent (spoiler alert, she exited the trial officially this weekend). So I don't have the benefit of time and other experiences for comparison. It's still very fresh, and upsetting. But, that's how stage 4 cancer works. As a care partner, you make sure that your loved one has all the information that they need to make an informed decision, and then back them up and care for them.

Cancer is hard. And change is hard. But having options is everything. We just need a lot more of them. Hence, trials. There will be a future episode on how to find trustworthy information, and also how to search for trials.

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

Host, producer/editor, and composer: Elsa Lankford

Kristine - I know this was difficult. But I know that the immunotherapy and chemo are going to work together to kick some cancer butt.

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

Helpful links related to this episode:

ClinicalTrials.gov - this lists clinical trials not just in the United States, but many international trials as well.
Fight CRC Clinical Trial Finder - a very helpful set of trials just for CRC with some commentary. You can include in your search if trials allow previous immunotherapy.
No Regrets Spotify music playlist - Kristine creates a new dance playlist for each new chapter, including this one as she goes back to chemo. This is her newest playlist, that we danced to today during her chemo infusion.
(01:32) - Leading up to the trial
(02:33) - MRD Trials - Minimal Residual Disease
(03:25) - Immunotherapy and MSS CRC - getting there, but still a ways to go (mainly through trials)
(04:41) - Getting the call to be on the trial
(05:55) - Why this Phase1B trial was a good idea for Kristine
(06:58) - Starting the trial - paperwork and plenty of eyes on the case
(07:47) - Allergic reaction and Benadryl to the rescue
(09:01) - Trial side effects - even one good one
(10:46) - We need more info for Stage 4 MSS CRC, especially for immunotherapy trials
(11:39) - Why it is so tricky to know when/if immunotherapy is working
(13:43) - Getting as much information as possible, even if it says things you don't want it to
(14:25) - Being a care partner when your loved one is doing a clinical trial
(17:05) - Being optimistic and realistic when there's yet another pivot

Welcome to the seventh episode of Care Partner's Compass: Navigating CRC where I talk about my wife Kristine's very recent immunotherapy trial and all that it entailed.

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

Host, producer/editor, and composer: Elsa Lankford

Kristine - I know this was difficult. But I know that the immunotherapy and chemo are going to work together to kick some cancer butt.

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

Helpful links related to this episode:

ClinicalTrials.gov - this lists clinical trials not just in the United States, but many international trials as well.
Fight CRC Clinical Trial Finder - a very helpful set of trials just for CRC with some commentary. You can include in your search if trials allow previous immunotherapy.
No Regrets Spotify music playlist - Kristine creates a new dance playlist for each new chapter, including this one as she goes back to chemo. This is her newest playlist, that we danced to today during her chemo infusion.
(01:32) - Leading up to the trial
(02:33) - MRD Trials - Minimal Residual Disease
(03:25) - Immunotherapy and MSS CRC - getting there, but still a ways to go (mainly through trials)
(04:41) - Getting the call to be on the trial
(05:55) - Why this Phase1B trial was a good idea for Kristine
(06:58) - Starting the trial - paperwork and plenty of eyes on the case
(07:47) - Allergic reaction and Benadryl to the rescue
(09:01) - Trial side effects - even one good one
(10:46) - We need more info for Stage 4 MSS CRC, especially for immunotherapy trials
(11:39) - Why it is so tricky to know when/if immunotherapy is working
(13:43) - Getting as much information as possible, even if it says things you don't want it to
(14:25) - Being a care partner when your loved one is doing a clinical trial
(17:05) - Being optimistic and realistic when there's yet another pivot

Previous Episode

S1Ep6 Teamwork makes the cancer suck less

Welcome to the sixth episode of Care Partner's Compass: Navigating CRC where I talk about the importance of a team of... teams?

It's so difficult to go through CancerLand by yourself - as a stage 4 patient, or even as a care partner. In this episode I talk about the importance of a good medical team (local and when you get multiple opinions), the importance of oncology nurses and all of the techs and phlebotomists and staff that work at the cancer centers, supportive teams, and a team for the care partners. We need people to talk to, to do fun stuff with, and to listen to us. Those people might change over time. It's never too late to start or join a team.

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

Host, producer/editor, and composer: Elsa Lankford

Kristine - by the time this goes live, we'll know what the next step of the plan is. You're incredible 💙

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

Helpful links related to this episode:

colontown.org - If you or your loved one has colorectal cancer, you'll be able to meet some great people here.
MSK Integrative Medicine at Home - This has some great exercise and meditation programs for patients and carepartners online. It's just $20/month and Kristine uses this for probably 5 classes per week.
Wellness House (Chicago) - Free in-person (if you're in/near Chicago) and online art and exercise programs for people with cancer.
Hirsch Wellness Network - Free online and amazing in person (if you're in North Carolina) art and exercise classes.
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.
(01:36) - Medical support team
(02:52) - The importance of multiple opinions
(04:06) - The patient is the captain
(04:53) - Kristine's medical team
(06:03) - The medical team isn't just the docs (spoiler alert: oncology nurses are incredible)
(07:16) - Supportive team
(07:36) - #TeamKristine
(08:48) - Team members are going to fluctuate over time
(09:01) - People don't understand stage 4 cancer, especially stage 4 CRC
(10:41) - Supportive team members can come from all over
(11:28) - Some helpful things that supportive teams can do
(12:40) - Don't assume people affected by cancer want space
(13:56) - Support team isn't just people you know
(15:03) - Getting support from others who have had cancer or are still going through it
(16:07) - Carepartner team
(17:23) - How important it is to talk, with your voice, not just your fingers
(18:01) - It's never too late to start or join a team

Next Episode

S1Ep8 Finding reliable medical information online

Welcome to the eighth episode of Care Partner's Compass: Navigating CRC where I talk to medical librarian Carrie Price about how to find reliable medical information online.

I know I learned a lot from Carrie during this episode (including how awesome medical librarians are!), I hope that you do too.

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

Host, producer/editor, and composer: Elsa Lankford
Guest: Carrie Price, Research Impact & Health Professions Librarian at Towson University

Kristine - here's to doing fun stuff - I love you ❤️

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

Helpful links related to this episode:

PubMed: https://pubmed.ncbi.nlm.nih.gov/
MedlinePlus: https://medlineplus.gov/
NCI: https://www.cancer.gov/
To limit a google search: fruquintinib site:.gov (first result is sponsored but rest of results are .gov sites)
Examples of patient health libraries at cancer centers:
- Mayo: https://monument.health/mayo-clinic-health-information-library/
- Johns Hopkins: https://johnshopkinshealthcare.staywellsolutionsonline.com/
- MSK (Memorial Sloan Kettering): https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
Google alerts - to get an email once a day, once a week, or as it happens with search results (I have Google alerts for clinical trials, pharmaceutical companies, etc. that I'm following
(01:28) - Being bombarded with information, not knowing if it's trustworthy
(02:34) - Why medical librarians are awesome
(03:30) - Finding trustworthy and understandable information - Medline Plus and the NCI database
(05:03) - MedLine Plus can be helpful to look up supplements too
(05:41) - How to make Google be a little more predictable and trustworthy with its results
(06:38) - Getting somebody more science-oriented onto your support team can be very helpful
(08:02) - PubMed has a lot of articles, here's some tips on narrowing down the results
(11:09) - How to be more sure about your article from PubMed
(13:04) - Google Alerts can be helpful, but it can be more helpful if an article has been vetted and isn't sensationalist
(14:00) - When the headline is too good to be true
(15:33) - FDA drug approval database
(16:38) - Larger cancer centers have helpful online patient health libraries
(17:15) - The importance of looking up supplements (and asking the onc about them too)