Jamie Willson, Caregiver

We are going to move to the last piece here: thinking about how we can do better overall. Tim and Jamie, overall, what do you think? I know you think that we do great, but think about the overall world of cancer we live in. What do you think oncologists and the oncology team can improve in terms of managing patients, in terms of education, and in terms of treatment care? There are also a lot of financial implications, and we have not touched upon those. There is a whole hour that we could spend talking about that effect. Then, of course, how do we make sure that we end up meeting your needs? Any high-level thoughts about this?

It is all those things you just touched on. You worry about it. You always hear the scary stories of people who have exhausted their life savings to live two months longer, so that is something definite that we decided. I could have kept working, but my goal was to retire at age 55, so I stayed true to that. Keeping Jamie’s job and the insurance takes a bit of the burden off me as far as getting to the right providers. I did not have to change. We have gone through three insurance companies, and we have been able to stay with the same providers. That has helped a lot for consistency and everything.

You bring up a great question overall. Yes, we feel fortunate to have fallen into your hands, Dr. Bekaii-Saab, and Kelley’s, and that is great care. Looking more holistically, that is an important question. As great a job as you guys do, sometimes the pieces are not all connected. You guys do a great job, but then I get a bill from an insurance company saying that they are not going to pay for something. Sometimes it feels like the left hand does not talk to the right hand, and I have to fight with an insurance company. I have to get the paperwork that they need because they do not understand that a medication is not indicated for this, but it is still used that way in the oncology world. All those little pieces, sometimes from a holistic perspective, are out there floating around. I do not know what the answer is, but it feels overwhelming to try to keep all the pieces together. I often think about even older patients who might not have the ability to pull all those pieces together. How do they manage with all this? We are fortunate that we are in the field we are and that we have the resources we have. Even with all that, it can be overwhelming to fight with an insurance company or to try to get documentation when you just did that last month. Those are the pieces that, as a society, we could do better at.

Absolutely. Reese, what about financial resources or directing patients to financial resources and navigating that? In addition to having a diagnosis of cancer and having to fight through that, you now have to worry about the finances and financial support as well as fighting insurers and filing for bankruptcy for some patients. There are a lot more tragedies than the eye can see. What tools are you able to use to help with this, or what tools may be needed in your viewpoint—if they are not out there—to educate folks more?

 Fight CRC [colorectal cancer] does not provide financial support directly, and we generally point to our partners at Triage Cancer who are in tune with the legal battles patients and their families may face as well as insurance issues and finances. We have an established relationship with them, and we will do webinars every year or so to update our community on the different things that they might need to know. I would say that, even though we do not provide the financial support or necessarily the legal advice directly, we work with others to do so. From an oncological and a medical perspective, staying abreast of what advocacy organizations do and what types of resources they offer is extremely important to be able to point patients to the resources that exist, because there is a lot out there. Sometimes, it is not necessarily projected as much as it could be, but there are resources out there that are available, and advocacy organizations know about them and are able to point patients and their loved ones to those resources.

Kelley, you help oversee, manage and ensure that the patients are navigated safely through their journey, and it takes a big team. You have the pharmacist and the nurse working with you and others as well. If you have to give guidance or give advice to other health care providers, patients or caregivers about the model that—from your viewpoint—facilitates this level of care the most, what would you say to your peers?

You have to have a conversation with your patients regularly about what they need. A lot of times, patients do not want to bother us with stuff: “I am having this thing, but I did not want to tell you because I know you are busy.” We have to listen to what our patients are telling us, and we have to educate them about letting us know what they need. We at the Mayo Clinic are pretty fortunate in that we have a lot of resources that other facilities may not necessarily have. We have social workers who are fantastic, and we have pharmacists who are brilliant. If a family member, patient or colleague outside oncology recognizes something that is happening, all they have to do is let us know. We may not have the answer for it, but we may be able to do something to make things better.

We are certainly blessed to have that level of support for our patients. There are a lot of folks who work in the background: the finance person, the nurse, the technician, the pharmacist, the nurse practitioner, the physicians, from the chemotherapy nurse to the nurse who is focused on education, the navigator. It is a big team. The complexities of the system around how we care for our patients is immense, and we certainly hope to continue improving things with the support of organizations and advocacy groups with Reese’s work. Of course, we do all this for our patients, for you, Tim, and certainly for their families, Jamie and their son.

With that, I am going to thank all of you for this wonderful exchange. It was very educational, and it is great to be able to have this discussion with all of you. Thank you.

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Improving Colorectal Cancer Management

Tim and Jamie, I am going to go to the two of you, and feel free to take it together. Outside the clinic and besides the two of you, who has played a role in supporting you through this journey? Have you been able to be somewhat more open about communicating about this with friends, family, and loved ones? It is always difficult to talk about an illness at any age but especially when you are younger. Have you felt that some questions or actions were a bit uncomfortable? Share your experience about all this.

I will go first. When this started, I was still working full time. I was a national manager, so I was traveling all over the country, and I kept it pretty tight. I had my immediate supervisor in on what was happening because I felt that, once you let that cat out of the bag, everyone is going to treat you differently. All of a sudden, you would go from reaching out and being a good manager to people, to “He has this this huge burden on his back, so let’s not do that.” For the beginning part, I was pretty close: just family, immediate people at work and maybe one or two friends on that.

As things then progressed and time has gone on, people are starting to wonder why they have not heard from me too much, so I extended who I was sharing the information with. In the beginning, I was more comfortable with not making it a big deal and broadcasting, “I have this issue, so bear with me.” I did not do any of that. As time has gone on, I have been able to have good conversations with people I have not talked to in a while. That could help me a lot. I have a different perspective on it going into a lot of years doing this.

Tim has evolved a lot in his willingness to be open. Initially, understandably, he was used to being tough. His nickname was Nails; he was used to be being tough and not wanting to show weakness, so I understood that. He did not want anybody to know, which sometimes made things difficult at the same time. For me, I was fortunate in the sense that I always worked for oncology companies from the time this happened, so I have had a lot of support at work. People have been understanding. With that said, this year I started with a new company, so that is something I put on myself. I have a fear of wanting to prove myself before they know that I need some support. There is always that battle going on in the background.

In terms of Tim, he has definitely evolved. He has gone from not wanting anybody to know to being willing to talk to people about what is going on. He realizes that talking and reaching out for help is a good thing, and not with everybody but with the certain people you feel comfortable with. Everybody is different. Tim is a private person, so his journey with even expressing things to different people is different from somebody else’s. That is the important thing: understanding that each patient is different and that this is a part of their life, but it is different for each patient. Some want to talk about it, some do not and some evolve over time and may not have wanted to initially but later find value in that.

I totally understand. Reese, I am sure that you are in the midst of that. You know a lot about these challenges—your organization does—and how not just patients but their caregivers also face sharing the treatment journey with their loved ones. What kind of resources do you have to help patients, especially the caregivers, in navigating this treatment journey?

We definitely recognize that caregivers are facing unique challenges in the time of COVID-19 [coronavirus disease 2019]. I would point out that, when we surveyed our community, we also pulled in caregivers, and we found that they were more likely to report having feelings of anxiety and nervousness when facing these things on behalf of their loved ones. Out of COVID-19, we have developed several caregiver resources looking at caregiver burnout. Of course, there are issues of finances, mental health and job stability as I mentioned. There is a whole gamut of challenges that we have heard from the patient and caregiver community that caregivers are facing, so we have channeled some of our energy toward creating resources with webinars, blogs, and 1one-pagers. Those have been helpful in identifying the true challenges that the community is facing and providing some support there. We have also worked with the Caregiver Action Network, which is focused on providing resources for caregivers, to disseminate that information.

That is quite a lot. This is such a complex issue, for not just the patient but also the family and loved ones. The availability of these resources at a time where you feel lost and confused as you go through these roller coasters is certainly a comfort.

Resources for Patients with Colorectal Cancer

We are still living in the world of COVID-19 [coronavirus disease 2019]. Hopefully it will soon be behind us, but it is not too soon, sadly enough. We are seeing the light at the end of the tunnel.

Tim, especially as we started to understand how this can be even more complicating for the lives of our patients with cancer and even worse for those on treatment, how has this pandemic impacted your treatment process? You have been through a lot for the last nine years from diagnosis, early stage disease, then later stage disease, to then going through a lot of trials, and you are navigating through your cancer and have to think about COVID-19. Tell us more about how this affected you. How did this affect your line of thinking about coming to the clinic and about getting treatment?

On the one hand, I am going, “What else is going to go wrong here?” Then it turned into a full-fledged pandemic. You are exactly right because I am now a high-risk patient. Going outside the house in the beginning is scary because, as I said, if you are in that group, then you should be staying home and not doing anything, which was hard on me. Everything else was closing in, and I have never seen the whole country in such a panic like this. You then put on top of it what I am dealing with, and it seemed like a double whammy type thing. I was confident that every precaution was being taken.

I had a procedure this morning, and it was 72 hours before to get tested, so there are a lot of things and a lot of hoops you have to jump through. At the end of the day, I felt confident in going to the clinic and that nothing bad was going to happen there, aside from going to a restaurant or something like that. I have a lot of confidence in my health care provider team and the direction they said I should be going in to put me on a path with the best direction.

Jamie, you are again dealing with a treatment and with the thought of cancer. On top of all this, your mind has to go through, “Oh, God, now there is this COVID-19.” We are not thinking about ourselves; we are thinking about our loved ones and “What if I get exposed to it and bring it home? What if my child gets exposed to it and brings it home?” How did COVID-19 affect your thinking and your feeling about Tim getting treatment or even venturing out of the house, even in full gear?

I tried to discourage him from leaving the house at all.

This puts a lot more on me: I run all his errands, but I just think it is the most prudent thing to do. With our son, it has been a bit of a discussion in terms of how much we keep him home or let him have a bit of a life. We have let him out a bit, but obviously in the safest way possible.

To answer your question about treatment, the definite benefit of treatment outweighs any risk. To Tim’s point, we felt confident that the Mayo Clinic has taken every precaution possible to keep people safe. We have felt safe about him being there. We had to go to the ER [emergency department] once, and I was not excited about it, but Mayo has done everything in their power—and again, the benefits certainly outweigh the potential risk.

Yeah. Mayo and a lot of other places as well have done a great job of protecting patients, especially the most vulnerable, whether that means cutting down on the risk of exposure or keeping things quite clean. It is not that we discovered soap during COVID-19. We had soap before COVID-19, but we certainly took way more elements like limiting visits, which was sometimes painful for not just the patient but also the provider. We always love and enjoy having family members with the patient, but we had to limit exposure, and that was mostly for the safety of our patients.

You are right: In the first stages of the pandemic, I started wearing scrubs because we did not understand a lot about the virus and its transmission. Starting in August, I shut off the scrubs and started wearing my suits, and I am thinking that this is the safest and cleanest place I could be. I am the least worried around the clinic and clinic space, so I got to be comfortable. If I am comfortable to have you in the clinic, I should be comfortable wearing my suit and being able to be there. We still, of course, do all the proper measures—wearing masks, distancing, using glass, cleaning up, and all this—but that certainly adds value.

Reese, I want to get back to you because I am sure, especially during this pandemic, that you have been bombarded about how you get information. “I am anxious about COVID-19. Should I continue with treatment? Should I change my treatment? Are clinical trials more risky?” How have you and your organization handled the situation, which is not ending tomorrow? It will be ending but not tomorrow. How have you been handling this time?

We wish it would end tomorrow, that is for sure. Initially, when COVID-19 came to light in the United States, we started hosting focus groups and putting out surveys to our community. It was no surprise: Our community shared some of the sentiments that Tim was just sharing. One of the things we found is that we can get creative with our communications, and it has strengthened our ability to have that bidirectional conversation with community members. No longer are we putting all our time and effort toward in-person events, even though once COVID-19 is gone, we would like to bring that back and have a hybrid model. We have been able to get creative with how we are delivering webinars and having panels vs. just didactic communication and so forth. We have been able to up our email communications, and we have seen a bit more engagement in that sense. Having the community telling us what they are needing, what they are facing, and the issues that they are seeing that are lived and true is giving us the ability to respond in real time.

It has certainly been an interesting time for all of us, and it has been a learning experience. We are going through it, and thankfully our patients have been quite protected. I am happy to say that, for almost all our patients, if not all of them, we have been able to help them navigate through the pandemic. Have we established certain patterns of changes? Of course. Have we limited certain aspects of how we do it? Yes. Have we increased our utilization of telemedicine? Yes, to a certain degree. We certainly think that telemedicine will become part of the future of how we care for patients, but it will not replace face-to-face interactions. Most of our patients need to be seen face-to-face when they get treated on-site.

We have instituted logical applications of telemedicine. Of course, for now we leave quite a bit as a discussion point between the patients and us, but I will think about that in the future. For example, Tim, I am thinking about regorafenib. At the time you were on the trial, you were coming in every week at least for the first month to see Kelley. After that, we started spacing it out. In the future, I may need to physically see you only once every couple of months, and maybe in the middle we will do a telemedicine visit. In the long run, we will limit it quite a bit and try to minimize the physical communication when it makes sense. We have a lot of patients who travel distances, and for someone who just needs to discuss their scan or their labs every six months, we certainly do not need them to travel. For most of our patients, I do not see telemedicine replacing physical care: It is just a good supplement and complement to what we do.

During COVID-19, which continues on, we started thinking more and more. As capacity gets limited, especially during those surges like in Arizona—we are having a big surge that will hopefully tone down—patients are more reluctant to travel. It sometimes makes it a bit challenging, and we also have to think about the immunosuppressive potential of our agents and the added risk to patients. For example, Tim, you mentioned regorafenib. You are not on it now, but back then you were. When we think about the process for our patients, when I have the option between regorafenib and TAS-102 [trifluridine, tipiracil hydrochloride], I try to pick regorafenib for many reasons. One is that it is less immunosuppressive than TAS-102 [trifluridine, tipiracil hydrochloride], which can essentially lead to drops in blood counts and increase the risk of immunosuppression.

When I am thinking about an oral formulation vs. an IV [intravenous] formulation, depending on the setting, I am not going to take an oral drug and replace FOLFIRI [5-fluorouracil, leucovorin calcium, irinotecan] or FOLFOX [5-fluorouracil, leucovorin calcium, oxaliplatin], which are needed in the first- and second-line settings, but I certainly think about how quickly I want to tone it down to capecitabine maintenance, for instance. I am thinking about de-intensification strategies, which makes sense overall, COVID-19 or not. COVID-19 has certainly accelerated us moving into this world.

Colorectal Cancer Treatment Amidst COVID-19

You have been through another couple of trials, correct?

Was the experience the same or different?

They were about the same. The last clinical trial did not affect the feet or the hands as much. I do not know if my body is just adjusting to what is happening there, but it was pretty much the same. Being able to take it at home was a huge difference. We then did one clinical trial with immunotherapy.

No, unfortunately not in your type of cancer, the microsatellite stable type. Although the study you are mentioning was with an agent that was trying to inflame the cancer and make immunotherapy more effective, it did not pan out. Jamie, you are pretty knowledgeable about clinical trials, drugs and all that. How do you see yourself helping Tim go through the process of thinking about and enrolling in these trials? Of course, whether you are on trial or not, there are side effects to be managed, and there is sometimes a bit more that is unexpected with clinical trials. How did you handle all this?

For me, clinical trials are definitely beneficial and normal. I work for an oncology company. I have been in the oncology industry for over a decade, so I understand the value of clinical trials. Tim is obviously well educated in this space, so I was helping him go through the information to make an intelligent decision, looking at the pros and cons and what would be best for him in his situation. As he mentioned, we both view trials as an opportunity to try something new.

We have always talked with you about those next plans—A, B, and C and what comes next. It is empowering for a patient to know that, even though the standard of care is out there and you may have tried it, there are these new options, and there are better and better options available every day. He is already educated, but I was helping him with that process, understanding the pros and cons and supporting the decision he makes in terms of which trials he feels are appropriate for him.

You guys are a team, and you have certainly navigated this with greatness. Reese, I am going to go back to you and ask you this: How does your platform educate patients for enrollment in clinical trials? Obviously, Tim and Jamie have quite a bit of background, but most patients do not have the same background, and they probably want to reach out to you. How do you educate patients about clinical trial enrollment? What are some educational resources you may have for not just patients but also nurses and other health care professionals, especially when thinking about the side-event management?

From a high level, we have lots of printed materials, webinars and blogs that focus on these issues: clinical trial myths and enrollment questions. We get at the high level of what patients need to know about entering a clinical trial. The myths component is big, so we have a clinical trial minimagazine, which is our holy grail of clinical trials. It outlines everything a patient needs to know from starting to look for a clinical trial all the way through the end of a clinical trial. Those resources support Fight CRC’s [Colorectal Cancer] Clinical Trial Finder, which is a great resource for not only patients but also—as you mentioned, Dr. Bekaii-Saab—nurses and providers.

Our Clinical Trial Finder is not comprehensive, which is important to know. It pulls clinical trials from clinicaltrials.gov. On the back end, we actually have six patient advocates who are research advocates, sifting through the trials, looking for trials that would benefit patients with stage IV disease with microsatellite stable tumors as we talked about. At the time when it was developed in partnership with a scientist named Dr. Tom Marsilje, who was going through his own stage IV battle with colorectal cancer. He saw the need to pull in patients at the back end, to both Jamie’s and Kelley’s points about having educated empowerment among those facing colorectal cancer. This Clinical Trial Finder is directed toward those who have stage IV disease with microsatellite stable tumors looking for the trial that will be their next option, knowing that the algorithm we use is identifying those with the highest potential benefit and the lowest chance of failure in the eyes of our late scientist Dr. Tom Marsilje.

That tool is good for patients to feel empowered and search for trials themselves, but it is also great for a provider to search for trials while their patient is in the office. We have some great anecdotal stories about patients who brought the trial finder to their provider. They were able to sit in the office together and look at trials that were relevant for them at the time. Those are the main ways we do so, and then we also partner with some other organizations that have different nuanced communities that we can point our patients to as well.

That is an amazing enterprise. I know that we have had quite a few patients who have navigated your platform successfully and have been directed to many of the clinical trials. This certainly makes a world of difference, so thank you for what you do.

Jamie Willson, Caregiver

Improving Colorectal Cancer Management

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