Mike Herman: Beating the Odds Against Cancer, Inspiring the Future

Mike Herman did not just beat the longevity odds against cancer through clinical trials and self-advocacy—he's now on a mission to empower others to do the same.

Mike shares his story: from his and his spouse’s unwillingness to accept what they were sure was an inaccurate diagnosis to fierce self-advocacy leading to the accurate but incurable cancer diagnosis of Multiple Myeloma. True grit helped him surpass an initial life expectancy of four years with his blood cancer, along with searching for leaders in the treatment of his cancer and engaging in clinical trials. 

Ten years later, Mike is going strong.

Mike Herman’s story is not just one of cancer survivorship but of transformation and empowerment. Mike envisions a future where every cancer patient is well-informed, feels comfortable asking their cancer providers questions, obtains second opinions (and even third or fourth), and seriously explores clinical trials in their cancer battle. 

His personal trajectory underlines the advancements in cancer treatments over the years, with a shift from traditional chemotherapy to more targeted therapies like bispecific antibodies, which he gained through access to cancer clinical trials.

Mike emphasizes the critical role of clinical trials in improving cancer treatment and offers insights into his positive responses to new targeted therapies that significantly improved his life quality and extended his expectancy.

He discusses his cancer patient advocacy group, Speaking on Cancer Patient Advocacy, which aims to equip patients with easily accessible resources to understand their cancer better and effectively navigate their treatment options.

Tune into this inspiring episode to hear how Mike not only beat the odds but also turned his battle against cancer into a mission to empower others.

Access the evidence-based, credible, and informative resources Mike and his group have put together for over 20 types of cancer at: Speaking on Cancer Patient Advocacy https://www.socpanow.com/about

Mike Herman on LinkedIn https://www.linkedin.com/in/mike-herman-403225204/ 

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Transcript

Welcome to the Everything Cancer podcast, the empowering, extra large suitcase of the cancer journey. I'm your host, Jill, longtime oncology certified nurse and cancer support group facilitator. 

Welcome. This show is designed for survivors and those who love them, and to offer providers insight and fresh perspectives. Our spectrum of guests include inspiring survivors who share their journey, challenges, and how they thrive. Providers who give us insight into strategies for treatment, symptom management, and thriving through all stages of the cancer journey. Cancer care team members will give us behind the scenes insight into cancer care. 

If you understand it better, you'll be a more effective self-advocate. Leaders from cancer support organizations will share their stories and the resources their organizations provide. We'll talk about rekindling intimacy when cancer has changed your world, and we'll break down effective self-advocacy strategies into easy to follow steps. We'll talk about everything cancer. Thank you for listening to the Everything Cancer podcast. 

We greatly appreciate you being part of this community. The information shared on this podcast is not intended to be used for medical advice. For any health care concerns you have, please consult with your health care team. The staff at Everything Cancer podcast will not be answering individual health care concern questions. If you would like to support the Everything Cancer podcast, there are links in the show notes to our Patreon page and our website through which you can do that. 

We would greatly appreciate your support. Also, for information pertinent to our guests and their websites or books they have, there will be links in our show notes for them. We hope you enjoy this episode. Hello everybody, welcome to the Everything Cancer podcast. 

We're thrilled to have you here today and we have a special treat. Today we have Mr. Mike Herman. I'm going to let him introduce himself and explain what he does and why he's here with us today. 

It's been an absolute pleasure for me to meet Mr. Herman and I'm sure it's going to be a pleasure for you too. Take it away, Mike. Thank you, Jill. I do want to start off by saying how honored I am to have been chosen for this podcast. It's so important for us to get our messages out to everybody with cancer and National Cancer Institute recently released a statistic saying over 40% of Americans will get cancer in their lifetimes. 

But even worse than that, every one of us will be affected by cancer in our lifetimes. Many, many times over. I had mentioned to you that we went out to dinner the other day with another couple. All four of us had cancer. 

My wife and the other two all had cancer. And it's scary, right? This cancer is a scary thing. And I have been going through this for over a decade now, which is fantastic because life expectancy data at the time gave me four years. 

And here I am over 10 years later. I feel wonderful. I am achy and stuff. But some people say it might be because I'm getting older, which I don't want to believe. 

I wouldn't believe it either. So that's what drove me to this, right? Just still being here, especially the newer medications that I've been on in immunotherapy and two clinical trials have been absurdly good for me. And what I realize is everybody's not as fortunate as I am. The real lucky thing for me is my wife is an RN. And she actually started and headed clinical trials program for about 25 years. 

The cardiac clinical trial at the behemoth hospital in the area. So that's what I call an unfair advantage, right? I don't know how I would have done this or gotten through it without her support there. So the goal, if I had to pick an overarching goal of our organization, it's to give everyone that unfair advantage. And that's the responses I get when I speak or just what really continue to draw. So tell us about your organization, Mike. So our company is called Speaking on Cancer Patient Advocacy. And we do speaking engagements with groups. We started out with pharmaceutical companies, right? 

Specifically with Janssen's now J &J after a clinical trial of theirs, so on. And it was, to say, a miraculous response would be an absolute understatement. And I got to go there and speak with them about, it was the patient's point of view, but more importantly for me, we're sharing that these people are my hero, right? Not using the word hero likely. 

I think we all have our own definitions, but everybody agrees that a hero is someone who saves someone's life. And that's what these people did, right? The whole team there was responsible for saving my life. So after the call, after the talk, I get so many accolades, people coming up to me, it was wonderful, it was great, blah, blah, blah, blah. And we really appreciate you doing this. 

We hope maybe you could find time to do it again. And my answer is, you think this is good for them? I says, imagine getting to stand up there and thank hundreds of people who are responsible for saving your life. 

I said, as good as you think it was for your folks, it was even more impactful for me. So that's how it started, their information about how to be your own best self-advocate, the benefits of that, how to advocate for others. One of the biggest responses we get positive on is how to work with people in your organization who have cancer, how to support them and how to talk with them. One of the things that drove that piece of it was I was doing a talk with a very good friend of mine, his name is Scott Weintraub. 

And he was in the pharmaceutical industry. We were talking about the, how do you talk to your friend with cancer? And I was doing most of the talking. He was kind of like an advisor for me. And he says, hey, Mike, can I answer this question? 

And I'm like, sure. And he starts talking about how devastated he was when he heard, we've known each other since high school, when he heard that I had cancer, especially this incurable one, but didn't know how to talk to me. And he said, and I didn't even know this until that talk. He says, I didn't know if I should bring it up every time we talk, or if that's going to depress you and make you feel like I got other things in my life besides cancer, or if I should just not bring it up. But then maybe you're going to think, I thought Scott was a great friend and he doesn't even call me on this. So he said, I didn't know what to do. And if you remember for the first couple of weeks, I didn't do anything after the first call. And he said, and then I remember calling you and saying, Mike, I have this dilemma. And I don't know what to do. And we talked about it. And should he bring it up that I have cancer? 

Should he not? And we came up with an agreement that I totally forgot about that was he could call me whenever and or I call him. And if I want to talk about cancer, I'll bring it up. 

And if I don't, it just doesn't get mentioned. And it was such a simple, easy solution to deal with people with cancer. So we don't know. If you, unfortunately, I am one with cancer, but if I'm talking to someone with cancer, I don't understand it. I don't know how to deal with them. Cancer is almost synonymous with murder. This disease is going to kill me in the past, but it's so different now. So it's very different now. 

Bring that to people and the new technologies and science fiction like drugs they come out with are absolutely amazing. I love the approach of having a collaborative conversation about how should we talk about this? How should we bring it up? I think that's great. And then not when you're laying, you're both laying your cards on the table and deciding how to move forward from there. Exactly. And you know, it could have been a very, it could have stressed the relationship one way or another. Right. 

Possibly if he hadn't done, I don't think it would have been, we've known each other for decades and decades, but it's always pop, right? You get cancer. It's the most, it's the most overwhelming thing. And then you, Jill, my good friend, you don't even call me, right? Maybe you're not really my good friend, you know? And meanwhile, they're terrified to call you. We're picking up here. 

Right. So Mike, you mentioned that you have had, I think it's multiple myeloma, right? You've been diagnosed with that for 10 years. You described it as incurable. 

Tell us about your outlook of dealing with the journey that you've been on for 10 years. So I went in for blood work and blood work. So I went back to, for blood work, probably four times. My GP says, I want you to see our hematologist. And so we go up to see her. And after all of this, her response was, it's just a B12 deficiency. 

You don't have cancer. And my wife, who is probably all of five to 120 pounds, looks at her and says, no. And she was taken back because she's not used to being talked to that way. 

Not nasty or anything, but she says, what do you know? That's not a B12 deficiency. It doesn't happen. 

You don't fracture many ribs because you have a B12 deficiency. It is. That's all. I want you to go home. We'll meet again in a couple months and take B12. 

No. We're not leaving with that diagnosis. Finally, I think in an effort to get rid of my wife and I, she says, go down and get a bone survey then. And a bone survey is nothing more than x-rays from head to toe. You just stand there. It's maybe, I don't know, 20, 30 x-rays, they take. 

Really simple. So I don't remember a week or two later, I'm at work down outside of DC, about 80 miles from where my wife is. And I get an email from them saying, check your portal. 

There are some results there. Check your portal is a message for you there. First thing that went through my mind is this is so awesome. Because there's no way, no way, they would tell me through an email or a message that I had cancer. I opened it up and I read it and read it and read it because I knew I was missing something. 

There was no doubt in my mind. I wanted to figure out, finally I couldn't and I called my wife up and I read it to her. And she hesitated one second before responding. And at that point, I knew I had cancer. And I remember driving up to sea to be with her afterwards. And she says to me, there's two highways I could take home. 

She says, did you take 301 or 95 up here? And I said, I don't remember. I'm here safe and everything, but it was a blank. I just don't remember and it was very, very odd. So it was not a great start, right? 

I don't have to explain all the stuff that happened after that with them. But the lack of patience, keeping the patience at the forefront. Empathy, lack of empathy. She started off with home marobiopsis, which happened with my cancer. That's how they diagnose and see the progression. 

I've probably had 20 of them in my lifetime. And she starts out by saying, it's gonna feel like someone hit in the back with a baseball bat. I'm like, okay, great. 

Yeah, super. And we're talking and talking and it comes up again. And she says, yeah, it's gonna be like, you got hit in the back by a car. And, you know, I'm thinking, I get it. I get it. I get it. 

I get it. So as the conversation is ending and they're talking about the biopsy, she says, you know, I just want to prepare you. It's going to be, and I said, stop. And that's not like me. I said, it's bad. I absolutely understand it's bad. I'm afraid I'm gonna get hit by a train or something if you keep going. 

The worst part about that was that it almost would steer me away from that. I'll just go to an easy doctor that won't do that stuff. Right. But it was also bad in that they just didn't understand the patient point of view. Right. And what's really bad about it is they're not great. 

They're very uncomfortable, but it's not the worst thing in the world. Right. And when we going into that, I could tell you I was scared out of my mind. I'm sure. It wasn't for my wife, my best friend, my advocate. I don't know that I would have gone through it after hearing that from them. Arkansas is, that's where we felt the best doctor in the country was. 

Yes. A guy named Dr. Bart Barlow. I probably saw him 10 times in my nine months down there. And there was maybe once or twice, he didn't make some tweak to my medicine. So it was truly a, you know, in my mind, the first time I ever saw personalized medicine. There was a new drug approved and immunotherapy. 

It was called Daritumumab. Yes. I remember that. I remember when it came out. 

I wanted to go on this. It's the first drug that in, I guess, five years, six years at the time. I don't remember that got me into a sustained remission. That never happened before. 

Wonderful. As my myeloma does, it mutates, it comes back. And it did. And we had been on virtually every myeloma medication out there. The few that we were, the doctors didn't think were a good fit for me for whatever reasons. And we decided to go on to some clinical trials. 

And they were both at Penn. And we talked to a lot of people that we, I went on to a clinical trial for a drug called tokystamab. And it's what's called the bispecific antibody. And what's funny about it is when I explain that to people what it is, and I try and show my hand gestures and all, there's no doubt in my mind, they're looking at me saying, this guy watches too much late night sci-fi. Because it is. 

It's just, you know, they make this molecule and it's got two arms on it and one connects to the T cell and one connects to the protein on a cancer cell, the protein that hides it, brings them together, kills it. And I was 18 months undetectable on that drug. Wow. 

And even more amazing is I'm told I have the world's best response to it. At the time, there were two arms to the study. One was through my IV and one was a sub-Q shot. Now, my stomach, I was chosen for sub-Q. So I remember getting a shot and I'm saying, it's sub-Q, it works a little bit slower, but we think in three to four days, we'll start seeing some results. 

Fantastic. Four hours later, I'm in pain and it just kept getting worse and worse. And I, so we were hospitalized in the beginning of most studies, I believe. 

My wife is telling me most of this because I was in such pain, like, remember, I'm kneeling on the bed. I am not one to curse that much. And she's like, you were cursing like a drunken sailor. And I was like, I was. And she says, yeah. 

So the phone rings a little less than 48 hours after the first shot. And I'm still kneeling on the bed in pain. And just, my wife is talking and then she puts it up to my ear. And I remember thinking, what is the matter with you? 

I mean, the worst pain ever here. And you're, and I didn't say anything, which is part of the reason I'm still alive today. But I didn't say anything to her, but she said, just, you don't have to do anything. 

Just listen. So she puts the phone up to my ear and it was my study doctor, Adam Cohen. And he says, hey, Mike, I know you're in a lot of pain now, but I wanted to give you some results. And still in my mind, I'm thinking, why can't we do this tomorrow or the next day? He goes, sorry, in 48 hours, two days after the injection, two days, my cancer was down by over 99%. 

Oh my gosh. But that's why you were in so much pain because the level was happening in your bones and your marrow. It goes towards, even today, doctors understanding the patient, right? So if someone had said to me, when cancer is killed, this is what happens. 

The T cells, they release the cytokines to kill them and you have all the cancer and all the cytokines. And Mike, the worse you feel, the better it is. It wouldn't have been any less painful, but psychologically, I would have been sitting there saying, I know I can take this for another hour, one more hour. And I remember looking at my wife saying, I don't think I could do this again. 

And it was her that educated me and said, it was so bad because it killed so much so quickly. There's no cytokine release when there's no cancer in there. So from that day on, I never had a response for the entire 18 months I was on it. And as Mike cancer does, it mutated and came back. And I went on another bi-specific antibody, something called Savastamab from Genentech. Two weeks after the first dose, my cancer was undetectable. 

And what's really neat about the study, although it scared the bejeevers out of me when I was told about it, is it ended after a year because they wanted to check how durable it is. And in my little mind, I'm thinking, just keep giving me drugs. They're working. 

Don't stop them. I don't want a chance, anything. Well, about three weeks ago, I had my seven month checkup for the first time in over a decade, no treatments at all. And my cancer is still undetectable. I'm so glad to hear that. It's so important to get the message that things are different today out to the... In the past, there were three things you did if you had cancer. 

You were sleeping, you were at chemo, or you were kneeling over the toilet getting sick. You're right. And it's changed so much, thankfully. And I think a lot of people still have that past view of it, and it's so different now. Two things. My first is there's a real paradigm shift going on in cancer care right now, where it used to be the focus was on the cure. And that isn't necessarily the focus. The focus is now looking at it as keeping cancer under control so that you can live your life. 

Right. So again, I hate that my cancer is incurable, right? And actually, it's incurable so far. 

So that's... It hasn't been cured yet, I can't because I know it's going to be. But when you look at how... The whole shift and how we look at things, and how we treat patients being differently, it's true. In the past, we had silos. Even today, there are... And everybody's enemies. There is the pharmaceutical company. There's the pharmacy benefit managers. There's the doctors. 

There's the Haas. And everything is everyone else's fault, right? It's because the prices are high because of them, not us. And so, in fact, when I started reaching out to folks, someone had said to me, isn't the pharmaceutical industry who you're fighting against? And my response was, I'm not fighting against anybody. 

I'm trying to bring people together because that's the only way... Getting all of the stakeholders at the table is the only way you're going to fix the system and break down these silos and try to understand better about kind of your point. So for me, the cure is kind of a big thing if it comes about. But mine is considered a chronic condition now, right? Thousands of people in the U.S. still die every year from it, but it's a chronic condition. Here I am 10 and a half years later, and I feel great. 

Kind of... I'm glad you're feeling great. And I love seeing the advertisements on television now for medication for metastatic breast cancer and metastatic lung cancer. That person can now keep it under control, go to work, engage with their kids, engage with their grandchildren. And so it's a step away from going towards the cure and more keeping it under control and living your life. 

Yeah, and you had made a comment before. And it's really about... It's always about treating the cancer, right? Nothing would obviously make me happier than if it was cured. But today it's about treating the whole person, right? 

Right. I mean, I've shared stories with you in the past about just how... And you've even shared with me. Psychological, it's not us. 

The intimacy, that's not us. Our job is to make drugs to make you live longer, right? And it's really starting to change now. 

It really is. We'll get right back to our episode. See the show notes for links for information pertinent to this guest and episode. And thank you for being part of the Everything Cancer podcast community. If you would like to offer your support, you can at the Everything Cancer website or our Patreon page. There will be links to both in the show notes. Thanks for being here and take care. 

Enjoy the rest of the episode. Looking at the whole person, which is so important. It's so important. The second piece I wanted to bring up that you touched upon, you're very involved in getting the message out there, is the importance of clinical trials and the importance of discussing access to clinical trials. And if they're right or not for you with your doctor. So can you, from your perspective, Mike, your professional perspective and your patient perspective, can you enlighten our listeners on clinical trials? 

Right. So, you know, I just shared these stories about these two miraculous responses I've had, especially when Kimo really didn't do anything for me for five or six years. But what I can tell you is, although they might not be for everybody, every single person that's unfortunate enough to get cancer should talk about clinical trials with their doctor from day one. Right? The doctor may say, hey, you know, or, you know, there's nothing that's available for new people or this isn't going to work because of that. 

We don't think. But you need to do that. And when you don't get the right answer, you need to reach out to another doctor. You know, I remember one lady saying, I know my doctor isn't the greatest. 

You know, I've been going to him for so long, and I know it would kill him if I left him and went to somebody else. And my response to that was, I could promise you one thing. Nobody was ever on their death bed early saying, at least I didn't hurt my doctor's heels. And you know, any doctor, especially a good doctor and a friend, should encourage second opinion as I do. I've had, oh my God, second, third, fourth, fifth opinion. 

I've had eight different ones in my 10-year journey. And everyone, I didn't necessarily switch to them. Every one of them gave me different points of view, different understanding and the ability to look at things for myself. So from a personal point of view, you could imagine from what I said my feeling about clinical trials. And they come up with these new technologies, by specifics, tri specifics, they're coming out antibodies now, CAR T-cell therapy. And now, because there was a problem with being able to produce, right, T-cells, they take cells out of your body, they re-engineer them, and they put them back in, and a positive is it your own cells and such. So theoretically, they'll live, or at least live, a lot longer than a typical therapy. But the problem was the manufacturing, once you take it out of the body, months and months behind. Some people don't have that much time, obviously. And so now they're working on, I don't know if it's in clinical trials yet, it might be, but what they call an off-the-shelf T-cell therapy. Oh, wow. 

Okay. And what's neat about it, like the by specific antibody that was off the shelf, is if they decide to do it, and this turns out to be a good methodology, it's just another huge step forward in treating patients. So for our listeners who, I think oftentimes clinical trials are a mystery to us, can you describe what the different phases of clinical trials are? Sure. And what they mean? So there's a couple of different ways to look at that. The first is from the pharmaceutical point of view. So there's phase one clinical trials, which are really out there to look at safety. If I give Mike this drug, what kind of bad reactions will it have? That's the smallest group. Then it goes up to number two, where they try and figure out, can they increase the dose? Yeah. 

Right? And up to what point can they do that? And then phase three is where they're kind of implementing everything they've learned, and is what most people know is the final phase of a clinical trial. But there's also a phase four where they do some investigation after the fact, which is really good. 

I think there's not been a follow up on that. So from the pharmaceutical clinical operations point of view, that's how it works. From my point of view, and Obviously things change a little on each one, but in general, you know, once they decide or you decide with your care team that you're going to do it, they do a pretty good job of educating you on what it is and what the trial is going to look like. 

They don't do, as I mentioned before, a great job of looking at my point of view and such. So I went into both clinical trials. Both of them, I was hospitalized. One was for 10 days. One was four days, one week, four days the next while they tried it out. And that's fairly typical on clinical trials, especially in the early stages where they're not positive of what the reactions could be like. Although they've done it before, reactions are different for everybody. I wish they weren't. I wish everybody could have gone to a clinical trial and have the results I did. 

But the reality is they're different for everybody. So first thing I do is I go into the hospital and they do blood work and all of this other neat stuff and the doctors, 82 doctors are in there talking with you. And then they say, okay, tomorrow we're giving you the first dose. 

Do you have any questions? Well, it's kind of a crazy thing. It's just like a brain surgeon saying to you, hey, here's what I do. Do you have any questions about the procedures I use when I operate? Hey, of course not. You're a brain surgeon. 

I'm a person. That piece needs to be fixed a bit, the communications piece. And I know people at so many pharmaceuticals, Sanofi, Janssen and Janssen, Genentech, who are really working on, they're definitely doing better, but even like never good enough, right? What I've asked the two pharmaceuticals that I was on there, clinical trials, was why me and why do most people have much less of a response to this? And aren't there studies that can be done, right? Why aren't you calling me up saying we want to do genetic testing on you? 

We want to do more of this. We want to look in a second, I would have said, absolutely. And I got answers, and these were not from their advocate folks, but I got answers that again, were like I was talking about the brain surgeon. They answered it and they've done this. Does that answer your question? 

And I'm like, what was my question after what you said I didn't remember? So it was, and then it's done, right? So first clinical, they all worked differently. The first clinical trial I was on, you stay on a drug until it's either approved or it stops working. And there's laws out there. So let's say it was working for me, but for some reason it didn't get approved. 

Janssen's would still, for as long as I needed it, provide that drug to me. That's interesting. I did not know that. 

Yeah, which is a really good feeling, right? So here I am 18 months, actually more than 18 months. I was in 18 months in complete remission, but a little more than 18 months. And it was just a bit overwhelming in a good way experience. 

The whole clinical trials operation. And you know, after the first one, instead of being nervous or anxious or anything like that, I was like, another one, great, just, you know, I'm ready for it, bring it on. Same kind of stuff in the beginning because it worked so effectively. But this time I knew that the pain was good, right? It was good and it was temporary. 

Right. But the results were hopefully a lot longer term. And on this clinical trial, it was unique. 

The second one was unique in that it ended after a year because they wanted to test the durability. And for me, seven months afterwards, my cancer is still undetectable. First time in over a decade, I haven't been on cancer treatment. So you can imagine what a fan I am of clinical trials. And like I said, clinical trials don't work the same for everybody. They're not the right thing. 

They're not always the answer for cancers, especially some rare cancers where they just don't have any trials out. But you just always have to talk about them and consider them in every decision you make. Yes. So I have four quick points to make. 

Okay. Second opinions for our listeners, third, fourth, but particularly second opinions are so important. And if your doctor tries to talk you out of getting one, you need to find another doctor because that second opinion will increase your confidence in your current treatment if they agree with it. They may have additional insight into your current treatment that will help your current oncologist. They can send your treatment plan to your current oncologist. The Cancer Research Institute.org, which is an amazing organization lists clinical trials. 

You can go on there and find clinical trials, but they recommend that you find an NCI-designated cancer center to get your second opinion at. And Mike is agreeing with me. Yes. Right. So, you know, I'm very fortunate in many ways. 

But where I'm located, I am within two and a half hours of 10 of the top 50 NCI-designated cancer. That's great. Right. So, you don't... You know, in the middle of the country, in a rural area, you don't have that. You don't have that option. 

Right. So, the other thing the Cancer Research Institute suggests is if it's untenable for you to make it to an NCI-designated cancer center is to find an oncologist that specializes in your type of cancer for several years and has expertise in it. And you can work with your insurance company to find someone that is in network to go for that second opinion and all health insurance companies support second opinions. It leads to better treatment. The other point I wanted to bring up is there are clinical trials not only for treatment of cancer, but for symptom management. 

So open your ears, open your eyes, listen, read about them and find what can help you on your journey. There are also clinical trials for survivorship issues and quality of life issues. So there's a lot being done right now. A lot of them are looking at lifestyle medicine, lifestyle changes such as exercise and diet. And you are helping, if you happen to join in these clinical trials, you're helping other people through the data that's being collected to do better on their journey. 

And if you benefit from it, which hopefully we do, that would be great. How clinical trials work from an health insurance perspective is that standard of care would be covered by your insurance company. The clinical trial pieces where CT scans are being done, particularly your blood work, particularly related to the clinical trial, the doctor's visits, particularly related to the clinical trial and the clinical trial, pharmaceuticals or radiation treatment or whatever, that will be covered by the company that is sponsoring the clinical trial. So oftentimes it's a coordinated effort between your provider, the clinical trial coordinator and your insurance company. And again, your insurance company is there there to pick up the standard of care and the clinical trial coordinator will then make sure everything else goes towards the clinical trial company. So it's really imperative that you get to know your clinical trial coordinator well and work with them. And they're fantastic, knowledgeable, helpful people. 

And Mike is there nodding as I'm saying this. So that's so important. But again, Cancer Research Institute is a great organization that is full of great information about advocating for yourself and about access to clinical trials. I have absolutely fallen in love with the information on that site. And American Cancer Society is always a go to for information as a survivor or someone on the journey and anything dealing with quality of life issues on the cancer journey. American Cancer Society is fantastic. There's a lot of great organizations out there. 

Mike, I'm sure you're very familiar with leukemia and lymphoma society. A big one for me. Yeah, they're great. 

They're fantastic. So Mike, another point we were going to. So thank you for that. Another point we were going to talk about is how important shared decision making is with your doctor. And second opinions kind of segue into that a little bit. But you talked about when we initially were speaking prior to us our interview, how important that communication is. 

So I'll go back to a quick story I told you. Years ago when my great grandparents were alive, if I ever went up to them and said, the doctor said this, I don't think he's right. I'm going to go to another doctor and find out. Their response would have been something to the effect of. So you think you're smarter than the doctor now? 

And doctors were like these all powerful people that knew everything. And they don't. And there's so many and they can't. They're focusing on the probably the most critical piece and that's finding a cure for your cancer, but they can't know about everything. 

And allowing your doctor to make all the decisions for you is assuming that your doctor knows absolutely everything about you. And they don't. They just don't have the time. Sometimes it takes weeks or months to get into a specialty doctor. 

So being willing to ask questions, interject your thoughts, say what about, hey, I haven't, what about clinical trials? You know, well, we don't think there's any that are good for you right now. Well, you know, and you need to learn to push a little bit. Well, you know, what ones are out there and why don't you think they work for me and how will standard of treatment, if you will, you know, how will that affect me? Doctors sometimes don't have your perspective. They don't have your point of view. And it is so critical. 

Right. I talk to people who's responsible for your health. My oncologist. No, no, that's not true. My general practitioner is none of it's true. You're responsible, right? 

Yes. I could go to the best hospital with the best doctors and the best treatment. It doesn't matter if I don't do it or if I don't listen or if I don't adhere to what I'm supposed to do as part of taking that drug or the clinical trial or whatever. So people need to understand they're the ones that are responsible for their health. 

Right. But they're also responsible for communicating while they're doing that as to what is happening and also what is important to them. So if they stop taking something because it's interfering with, say, going to work, they need to let their doctor know before they decide to stop taking something. 

I'm finding I'm not able to make it to work while I'm taking this medication and then have a conversation with the doctor. Why is that? Well, I'm having diarrhea three times a day. Okay. Well, then we need to work with you on controlling that diarrhea. 

I understand why you don't want to get. I wouldn't want to go to work either with diarrhea three times a day. The doctors thinking to themselves, I'm sure. So that would interrupt your day terribly. So that that give and take is so important and that communication and also don't wait till your next appointment, call or message through your electronic chart what is going on with you. And Mike, here's my book. It's Cancer Journey, Guide and Journals, Empowerment in Diagnosis, Treatment and Beyond. 

Documenting your symptoms, writing down your symptoms is so important because then you're talking with your doctor about real data that's happening with you and it gives them something to act on and work effectively with you. You can do it in notebook. You can do it in your phone. You can do it in one of those composition books. 

There you go that you can buy at Walmart for a dollar or dollar 25 now. This just has organized journals for that. But writing your symptoms down when they occur and then being able to communicate them to your doctor or what's important to you or what is going off the rails for you. That collaborative give and take conversation is you advocating for yourself but also you taking responsibility for your health care. 

You know, you're absolutely right. And one of the really important things you head on is being prepared for your meetings. I use a note thing on my phone because I don't think of everything all at once. And as you can imagine with someone that's been on cancer treatment for over a decade, I forget things. So I have a note app and one of them will say, whoever my doctor is, Dr. Cohen and it'll be questions. Why this? 

How about? Because I think of them throughout the time period and I can tell you when I get there, if I didn't do that because in the beginning I didn't, I feel like I know there's things I wanted to ask you. I just can't remember. And this is a good way of keeping track of that. Yes. Keep track of the answers and what you hear. You know, these new medical record systems, these new portals you can go in and get your very fantastic, right? 

Yes. Because they even show you trends and stuff, which being a big business guy before I got sick, I love seeing. But one thing I did not do that I wish I did was take, keep better notes about things. Mike, one of the things that we talked about is how you want to help other people. And to that end, you are currently formatting a book, correct? Yeah. So that's one of the new initiatives we're looking at. So we're pulling together some information on the book. It's going to be something similar to the Don't Sweep the Small Stuff books. I don't know if, you know, I don't understand the business, so I don't know if I could use it, title Don't Sweep the Small Stuff for cancer patients. But the subcategory or subtitle of the book is going to be SOA, right? So what? 

I like that. You need to figure out what's really important and what's not important, right? Did you, how did you, did you know how to deal with cancer when you first got? 

No. Well, imagine your friends and loved ones and you get cancer. They don't know what to say or how to talk to you or how to treat you and all. 

I said, just think about their intent, right? If someone came to me and said, Mike, you ugly son of a whatever, but you look okay. Well, I might be offended a little by that, but if someone comes up to me and says, hey, you look really good. What they really meant was, hey, you look really good. 

Sure. And they're, and they're noticing you. They see you. Yeah, exactly. And so it's really meant to be an uplifting kind of, here's what's important. 

And, you know, everybody has to decide what's important to them, right? So for example, I stopped saying the pharmaceutical companies have given me an extra six years. Three months before I was diagnosed, our first granddaughter, Kenley was born, our whole adult lives. That's what I want the kids, grandkids, right? Joe and Vee's and you have kids just to get to the grandkids. 

I say that joking when we have wonderful relationships. Now here, you know, it is crazy to think about the thoughts in your mind. The thing that went the moment most when I found out she's being born was, I can't wait to stand at the kindergarten bus stop with my finger out and her holding my finger and waiting for the bus. And now, and then I was kind of like, I don't even get to do that. 

I'm going to get to see who go to kindergarten. This is again, this is unfair. This is the most unfair thing in the world. I'm a good person and it shouldn't happen to me. And you know, it takes you saying, you're right, life isn't fair. 

And it took me a little while to get to that. You know, when I was diagnosed and I suspect it's that way for a majority of cancer patients, one thing goes through your mind and that is, oh my God, I'm going to die. Right. 

And it's just a horrible feeling, especially later on when you find out that you have a life expectancy of four years. Right. It's just those two words. 

Everybody has it. Those two words when you become a cancer patient are probably two of the most horrible words you'll ever hear life expectancy. But that's the way it is. And once you get to the point where you say life isn't fair, you're absolutely right, Mike. And you know, you alone can't make it fairer, but you can respond. So you could either, you know, lay there and slowly pass away and be mad your whole rest of your life, or you could try and take control and do something about it. 

In the past, people thought, I can't do that alone. I have to hire someone. You can. And we do talks at corporations all the time and many other places. And that's exactly what we talk about is you can make a difference. 

You can understand. And there's so much information out there that puts it in a language that the average guy, as I call myself, right, not a doctor or research or anything, that an average guy can understand. And understanding the basics of cancer, how it works and what a treatment. 

And I like really helps you. So if you came up to me, if I met you and God forbid you had cancer and I never had it before. And you said, you know, Mike, I feel so fortunate. 

In my mind, I would be looking at you saying, she is so full of, you know, what? Yeah, because it's just, but the reality is once you really realize, hey, I've got cancer. There's not that there's nothing I could do about, but I have cancer, right? I have to work towards doing that. You start realizing that. It's you can do so much for yourself. And even from a caregiver's perspective, you could do so much to help other people. You don't have to be an expert. You it's best if you understand. And there are places out there where there are people out there, you go for information. We have a website that I'll shamelessly plug, but it's not a paid website. 

No, it's fine. So it's, you know, the company is speaking on cancer patient advocacy. And the website is www.socpanow .com. We'll have a link to that in the show notes. 

Oh, wonderful. Well, so what's really neat about it is and one of the most popular pieces is if you go to the website and click on the tab up top that says cancer types, we now have about 20, I think exactly 20 of the most common cancers and you click on it, right? For me, it was multiple myeloma. It could be breast cancer. 

It could be any of them. You click on it and in every category, the first link listed is here's what the NCI says about this. The next link is here's what the American Cancer Society says. 

And then below that, there's there's five to ten support links, right? Here's organizations that you can go to if you need financial help. If you need travel assistance, if you need to understand what's happening, if you just need to talk to somebody, I'm a wreck, you know, I think I'm going to die. 

Well, these folks that are specialists in these areas and talk with them and they can help you understand things a little bit better. Mike, can you give me the name of that website one more time? Sure. 

It's S O C P A. Now, NLW dot com. Speaking on cancerpatientadvocacy dot com dot now dot com. And like I said, it's an absolutely free resource. It's the information in there is current because of the way we designed the website. Right. Everything's a link. I don't have to worry about. 

That's perfect. Oh, you know, NCI put out these new statistics or guidelines or whatever. I, you know, I have to have four people working full time to keep all of this stuff for all the cancers. Well, thank you for doing that because you're giving people one stop shop, basically, to go to to find all these credible pieces of information credible that can really help them. And I know from being on them, they're very helpful. And I so appreciate what you're doing. And I like how you talk about how being diagnosed creates a paradigm shift, which is why you're doing the book of inspirational quotes. 

It creates a paradigm shift in how you think about things. Don't sweat the small stuff. So if I could, again, to your audience here, if anybody has come across any inspirational quotes, if they could either go to my website, you could contact me through there or go through Jill. And if you want your name attached to it and the resources, I'd love to do that. Some people don't like that and they just want it to be anonymous. That's OK, because like everything else with cancer, it's about you and what's important to you. And what's important and and how what has helped you get through your journey, what has helped give you strength and that's what you're looking for. 

Right. So I'm going to also include Mike's linked in contact information on the show notes so you can send him a message through that. You'll be able to send him a message through his website. And if you have a thought that keeps you going, share it with him and he'll give you credit in his book. And I think this book will make a lot of impact for people. Mike, I so appreciate your time here with us today. Are there any thoughts that you would like to share that we've not gone over yet? 

Yeah, a million of them. It's just 48 hours. We'll have you back. How's that sound? We'll have you back. And we can go through the important thing is you're responsible for you. Right. You're responsible for you. 

I love that. Some people take a very I know this one guy who's got cancer. I see him. I used to see him when I got treated locally every now and then. Super intelligent guy doing super well. And I said, hey, Merck, what? 

What are you getting for your cancer? And his response was don't know, don't care as long as it's working. I let them do what they want to do. And it works for him, right? But it's in my opinion, not really the best approach because right. So no, he's worked that great for everybody. Right. 

He was lucky way back then with standard treatments that that they were doing so good for him. So you just just look out for yourself. Take care of yourself. You're like they say you're number one and and you need to act that way. And boy, the more support you could get, whether it's family, friends, organizations, whatever. That said, you got to be careful about the information you accept. 

Right. Friends, family like that, never, ever want to give you bad information. But it's their view of things, right? And you'd never want to alter your your cancer journey, if you will, based on what someone not educated specifically about that says to you. So yeah, just look out for yourself. 

If you do need to reach me and you want to get me directly, my email is mikehactsocpanow.com. OK, we'll include that too. Thank you. And even if you have general questions, if you have thoughts, most importantly, if you have ideas, hey, Mike, this would be good for your site. Or, you know, hey, have you talked about this or do you look at anything? I am. You could ask me anything you want. And worst thing that'll happen is I'll say, I don't know. Let me get back to you on that. Or talk with your doctor. 

All right, talk with your doctor or hey, here's some folks you might want to talk to about these, it's just not my area of expertise. And it's almost like the friend stuff, right? So I do know a lot more than I ever hoped to know about cancer and the health care system. But I'm not an expert in all these areas, right? So if you want general information like we talked about here on the guy, right? If you have specific information like I cannot answer personal questions. 

I have this cancer, what should I do? First of all, the liability is great. But second of all, I don't know. Right. 

Right. Even with my cancer, right? I've been doing this for 10 years. I've been on a thousand different drugs. I know what worked for me, what didn't work for me. But I'm different than you, right? Right. That's why we need to have. You know, even if it's another old white man, right? 

Even though we look the same, we're different and our biology is different. That's why it's important. The last message is clinical trials. Always consider them. Please always make them a part of your discussion with your doctor. If they blow it off, you push. 

Have to be comfortable doing it. And if they keep blowing it off and I don't want to talk to you about it or don't like the idea of you getting second opinions. You probably have the wrong doctor. 

Yeah, I think so too. Mike, I so appreciate your time with the Everything Cancer podcast. It has been phenomenal having you here today and I can't wait to have you back. 

Thank you, Jill. I really appreciate you. And like I said, I'm honored. I'm flattered that I was chosen by you. And anyway, anything I could do to help people. 

You found me. Oh, yeah. Well, you know, so that's important. Always reaching out. That's how I get into this. 

Finding people at pharmaceutical companies that do this, finding doctors that are specialists and finding people. Right. You got to it's the whole person, including your psychological health and things like that, just making sure you try and connect with everybody that you think can have an effect and then keep in touch with them. Right. 

I know people on LinkedIn who just want to keep cooking. Oh, right. Right. Connect. But I don't like when people connect with me and then that's it. Right. You know, it's just I agree. 

It needs to be dynamic. And I am honored that you're here with me today and you chose to spend time here with me and with Everything Cancer. I cannot say that enough. And what you're doing is phenomenal getting the word out. Thank you. 

One of the things that really is going to help in changing our broken health care system. Thank you. I appreciate that. Thank you, Jill. We hope you enjoyed this episode of the Everything Cancer podcast. 

If you would like to show your support, there are links in the show notes to do so. The information in this podcast is not intended to be used for medical advice. For any health care concerns you may have, please consult with your own health care team. The staff here at Everything Cancer podcast will not be answering individual health care questions. Thank you. Take care and we'll see you back for the next episode of Everything Cancer. Bye bye.