Healthy Living by Willow Creek Springs
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Healthy Living by Willow Creek Springs
Beyond Protocol: When Patient and Doctor Paths Diverge
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A pivotal moment in my cancer journey unfolds in this raw, unfiltered conversation with my medical oncologist. After two rounds of chemotherapy for HPV-positive head and neck cancer, we discuss my remarkable NavDX test results: zero detectable cancer cells in my bloodstream. This breakthrough moment brings both celebration and complex decisions about next steps.
The dialogue captures the tension between standard medical protocols and patient-directed treatment choices. My oncologist explains the concept of "seduction by induction" – how excellent initial responses to chemotherapy can create a false sense of security when the cancer might still return without definitive treatment. We explore recent research on treatment de-escalation showing concerning relapse rates when therapy is reduced based on early favorable responses.
Throughout our conversation, we navigate the challenging territory where medical expertise meets patient autonomy. While I've been implementing a comprehensive approach including strict dietary protocols, enzyme therapy that blocks methionine, and oxygen therapy alongside conventional treatment, my oncologist maintains that radiation therapy remains necessary according to established guidelines. This fundamental disagreement represents the difficult choices many cancer patients face when personal research and beliefs diverge from medical recommendations.
The episode offers unique insights into cancer surveillance strategies, alternative treatment approaches, and the critical decision-making process that follows promising test results. Whether you're facing cancer yourself, supporting a loved one, or simply interested in understanding the complexities of modern cancer care, this conversation illuminates the human side of treatment decisions that extend beyond clinical data.
What would you do when facing this dilemma? Continue supporting the show as I navigate these challenging choices and share the unvarnished reality of my cancer journey.
Intro for podcast
Here is the link for Sunday's 4 pm Pacific time Zoom meeting
Hello and welcome back to the Healthy Living Podcast. I'm your host, joe Grumbine, and this is a special edition of the subscriber issues, and this is a call between myself and the medical oncologist in a hope to further our plan to finish the job of killing this cancer off. So stay tuned. Here we go, I know. I know that's the good news, though, right.
Speaker 2:I walked in on a room you, you are just a different looking guy.
Speaker 1:I'm not completely different.
Speaker 2:You can go out, that's fine.
Speaker 1:Yeah, yeah.
Speaker 2:Wow, that's just like buzzed in all the way yeah.
Speaker 1:Take a look at the other side. Looking good, looking good yeah.
Speaker 2:Sorry to keep you waiting. By the way, it's a crazy day. I apologize. It's all good, yeah, sorry to keep you waiting.
Speaker 1:By the way, it's a crazy day. I apologize. It's all good, no worries.
Speaker 2:Thank you for being patient with me, yeah.
Speaker 1:You are done with three is what I heard. I have the third on Monday.
Speaker 2:Oh, you're coming up on third. Okay, and two did such a number on you, my goodness, I love it.
Speaker 1:Yeah, yeah, yeah. How do you feel? I feel amazing. I've gained some weight back. I got my strength back. I'm recovering from the chemo within. You know, the week is tough because taking that, that pump it, it takes a lot out of me. But two days after I get that pump out, I'm I'm right back at it, so I'm sleeping good. I'm eating pump out, I'm right back at it, so I'm sleeping good, I'm eating good. Just really, I'm getting stronger every day.
Speaker 2:You walk by me right now.
Speaker 1:I know.
Speaker 2:So I called Kristen to talk to you. We got to get a CT scan after.
Speaker 1:Yeah, I have. I just scheduled that today. They called me up and I just wanted to clarify that if you were able to order the low dose version of that.
Speaker 2:So the problem with let me see what you order, because I told her to specifically order it. So tell me what you mean by low dose For the lungs. Is that what you're worried about?
Speaker 1:Well, I just the amount of radiation that you get with these scans. It's accruing and I'm just trying to minimize, you know, the exposure that I can it's not going to pick up on any any lung nodule stuff that we're looking okay, agreed we, we reserve that.
Speaker 2:Really, if there is no suspicion of anything in the lungs, okay. And same thing with the contrast. Two people always ask can you do it without the contrast? Because they just don't want to put anything in their body yeah the problem is without the contrast we can't see the lymph nodes in the area. So because there is no contrast, there's no normal versus abnormal comparison stuff I understand that's a reason that I could accept I'm sorry, but if everything looks good, because I know we were watching your Natura too, right?
Speaker 2:I'm doing two things at one time. I'm looking at your results. I'm looking at your NavDX. Is this back? Hold on it's loading, come on, did you get a result on your NavDX that I haven't seen, I haven't heard about it.
Speaker 1:No, I didn't get anything in my chart 30.
Speaker 2:it is, I mean 30, it might not be a result of this. What is this?
Speaker 1:Yeah, they said it could take a couple of weeks.
Speaker 2:yeah, Zach, what am I seeing here? Your NavDX is zero. That's fabulous. Let, your NavDx was zero, that's fabulous. Let's see, hold on, let me not get too excited until I can zoom in. Yeah, how do I get this bigger? Yeah, okay, so this was done on May 19th.
Speaker 1:Right, that was right when I did the last round.
Speaker 2:And it was zero. That's fabulous.
Speaker 1:I love that yes.
Speaker 2:Detected Now wait, I got to go back to my notes. All right, I'm looking at you, but I'm no, no, no, it's all good.
Speaker 1:I know I'm a little distracted right now. It's okay.
Speaker 2:Yeah, so you need to kind of track what I'm doing here. Yeah, you had gotten one treatment so far and you are the person who had your NAVD extend well before.
Speaker 1:Yeah, yeah, it was like in November or January, yeah yeah, you had a 24,000, almost 25,000.
Speaker 2:actually it was 24,988. So call it 25,000. We did not do one on your first day of chemo. I think we kind of dropped the ball because we were getting going yeah, everything was getting all messed around yeah yeah, but we did one on the second day and this one right I love it yes um, that's really good yes I. I think that portends a really good future for you I like, like that.
Speaker 1:So a couple of things. Obviously, I'm continuing to research and doing everything I can, to you know, look ahead and find the way to a long term result or long term solution, because I know this is a lifetime problem that I need to deal with, problem that I need to deal with, and what I believe we can accomplish with what we're doing right now and whether it's with this third session or we have to do something further is what they call a PCR, a pathological, complete response, and I believe we can accomplish that. What are your thoughts?
Speaker 2:The pathological complete response would not be confirmed unless you had surgery.
Speaker 1:Well, we could get a biopsy though, right.
Speaker 2:No, biopsy is not applicable because you got to take that whole area out. If you biopsy in the area where you think the disease was, or you know the disease was, but you don't get the actual cells that may still be there, you're going to falsely believe that you have a pathologic CR. Pathologic CR is only qualified when you have surgery. We do have a pathologic CR, but that happens if you have surgery.
Speaker 1:What about with additional lab work? I understand there's a newer test for this type of cancer that they and I can send you a link to it, but they're saying that it's 94 to 95% more valuable than some of the pre-existing tests and it's just been recently accredited, or it's a fairly new thing in the arena, and again, I don't know about it. I just have a number of advisors that are sending me latest research and data and published results of things Tell me what you're trying to change for the future.
Speaker 2:So the first thing would be surgery, but obviously with your base of the tongue, I would not encourage you to go through surgery.
Speaker 1:No, no, no. I specifically don't want to do surgery for that reason, and I didn't realize that that's what it would require. What I want to do is be able to know that we've gotten this thing gone and that we have a way to mark that and validate it and test for it and keep up on it to make sure that it stays gone. I mean, that's ultimately. You know, I can look at my neck, but that doesn't tell me that there's something going on. I don't either Exactly.
Speaker 2:I think the best approach in your case would be, once treatment is done, to kind of make sure that you get your NABDX done very closely. There's a lot more data that says that following a NABDX is very reliable.
Speaker 1:Okay.
Speaker 2:You're the one who had asked me is there something like a circulating tumor cell? Yes, it's equivalent. It is in the head and neck world there something like a circulating tumor cell. Yes, it's equivalent. It is in the head and neck world. This is a circulating tumor cell.
Speaker 1:Okay.
Speaker 2:So the only thing that I actually was at a big oncology conference this past weekend in Chicago and they were talking about what we call de-escalation Okay meeting, and it was really interesting because there's this guy in dana farber who actually works on nabdx circulating tumor cells and he uses this um very, you know, ahead of his time to kind of see should we be modifying treatment for patients yes based on their nabdx while they're in the midst of treatment, and this consensus was actually.
Speaker 2:We should not be okay at least as of right now, we don't have enough data to say that we should be, so it's called de-escalation.
Speaker 2:He did this trial that looked at uh, it wasn't a very big trial, but he looked at a patient with hpv positive your category patients yes who went through the chemo radiation route up front and had the navdx in the beginning and then at three weeks, and then at six weeks, and at three weeks, if their NavDx was zero, like yours is right now, they decreased their radiation and their chemo. That's what they call de-escalation, and there were about five out of 18 patients that relapsed right away. Yeah, so, so this is this was the most innovative trial that was done, because it was really interesting to see. This is a real-time follow-up.
Speaker 2:You're actually seeing it at the same time, not like, oh, three months later, what is it going to be?
Speaker 1:I agree.
Speaker 2:So it's really great research. It's stuck in my head. I was like, oh, I wish this would have been positive, because then we could cut down on treatment on so many patients that may not need it. But the data was actually suggesting that, a we need more information, more trials, and B as of right now, don't change the treatment plan kind of thing.
Speaker 1:I agree, and I'm not looking to reduce anything. I actually would look at what if I go through the third treatment and everything's continuing to get great, but after we do the CT scan we find it's not totally gone yet. And in the research I've done this course that we're on they say can be done up to six courses Would you recommend that we would continue the same treatment or would you think to maybe modify it? I'm just curious what your thoughts are. I don't have an answer. I'm just like what would you want to do?
Speaker 2:So if it's A, I don't think we're going to be ending up in that situation, because your NavDx is already zero.
Speaker 1:Yes, I know, me too, I love that.
Speaker 2:If you know, after, after number three, we get another navdx. It's zero and we get a ct scan and if, if there's a surprise, I would be really concerned. But the the logic is that if something doesn't go away by three cycles, getting more of the same is not going to accomplish the goal even if it's gone so dramatically down, it just wouldn't matter.
Speaker 1:Yeah, I don't think we're going to accomplish the goal. Even if it's gone so dramatically down, it just wouldn't matter. Yeah.
Speaker 2:I don't think we're going to end up in that situation.
Speaker 1:I don't either.
Speaker 2:Regardless. I think that's usually the logic behind it. So getting more of the same doesn't help you, then you really have to switch gears. Either you got to go different drugs or different modality of treatment. Whatever it is.
Speaker 1:Yeah, and I know that there are other drugs. I understand methotrexate is used sometimes, but it seems like it's really toxic and I really didn't want it.
Speaker 2:Honestly, I'm an oncologist of the newer generation. I have maybe used methotrexate once in my entire career. Did you see something that people used back in the day, when we didn't have good drugs?
Speaker 1:Yeah, we don't have the methotrexate now. I agree I wasn't looking to use it. I just was doing research to see what was out there. It seems like there's a number of different platinum-based drugs and there's a number of similar things to the docetaxel, but are there other? I know there's immunotherapy that they're using with this, but I I don't know much about it and I was a little concerned about that after three, giving you another platinum or another taxane is not the right way to got it okay more of the same or the similar it just isn't gonna do it yeah, it's basically your disease is saying it's not gonna to budge to this.
Speaker 1:Got it.
Speaker 2:Immunotherapy can be considered, but it's not approved in this setting. They're all looking into immunotherapy in this setting, in what they call neoadjuvant setting, even actually kind of going all the way into radiation and thereafter. And that data will probably be around the corner. It's probably around the corner, so it may be an option, but it's not as of yet established as an FDA-approved treatment.
Speaker 1:Okay, Are there other drugs that you know of? That would be a fallback, oh good.
Speaker 2:I mean in your case.
Speaker 1:I would probably if there was disease here in the neck that was still residual on scans or anything. I honestly think the right thing to do would be. I'm really trying to avoid. I think you're right. I think we're going to knock this thing out of the park and we're going to be done with it.
Speaker 2:But you do understand that even if your disease shows nothing there, the recommendation is still to go through radiation.
Speaker 1:I know it is. I understand that.
Speaker 2:Neuroadjuvant is not curative treatment.
Speaker 1:I know Potentially, sir, potentially is not curative treatment. I know potentially, potentially it's not.
Speaker 2:It's not designed as a curative solution, although it could be oh it's proven to not be actually what they call seduction by induction is what one of our radiation oncologists used to say that yeah you know, this is what they call induction therapy.
Speaker 2:It it seduces people into thinking that everything is gone and it comes back um, there's actually enough data that says that should we just stop after neoadjuvant and not go through the definitive chemo radiation? And time and again we've been burnt and been told that, no, you either need surgery, if surgery is an option, or you need definitive treatment, what they call definitive treatment, which would be the chemo and the radiation um. And that is something that is has proven and I actually will tell you. I have patients who have gone to mexico and done this kind of tpf or a version of tpf um in mexico.
Speaker 2:It's kind of funny, like I don't know what their medical practice is, but, um, they do those sort of like low dose chemo. So they've gotten a little cisplatin, a little taxid. They also give something called a little of the limta um and same thing the tumors shrink down, shrink down for even like six months a year. I've seen people come in two years later but it never goes away and then it starts growing back on those drugs because they just don't have the definitive treatment afterwards.
Speaker 1:So now and I know I know that you know this doesn't plug into your training and all of this, but you do understand I'm doing a number of things that I believe are partly responsible for the reason why this is working so well and the reason why I am recovering so quickly and I'm confident that it has an impact. I don't know what's causing what and I know that chemo is doing most of the work, but I also believe that you know this diet that I'm on, that I've been very rigid about, and the enzyme that I'm taking that blocks methionine from my system, and the oxygen therapy I'm doing and all the different things that I'm doing I believe have an impact on this. And I work with a group of people that are all in various stages of surviving their cancers and they're all working with similar therapies. That I am and it's a similar protocol of doing the things we're doing, along with first-line treatments and having similar reactions, where I know several people that were in a similar situation as mine.
Speaker 1:One was a similar cancer, one was a similar cancer, one was a breast cancer. There's different variations of it but they were able to do just a chemo only response and years later they're still following their protocol and they're still. They came up with a maintenance chemo solution where they're still, you know, taking an oral version of the drugs or some cocktail. I don't know that, you know the details of it, but we're dealing with people that are, you know, were terminal four years ago and they're still here doing their thing. Some that you know were metastatic breast cancer, you know, stage four, and they're cancer free still four years later. And I'm not saying that you know.
Speaker 2:You know medical literature that tells us certain things I understand too you want to do sure there um, but there is no maintenance chemo in this treatment plan.
Speaker 2:Just keep that in mind okay you don't give people maintenance chemo unless they're actually metastatic, and it's not maintenance, it's to control their metastatic disease. Um, and the guidelines would still be and I, I personally would not, and it's not for not wanting to steer out of the range of what my skills are, but more because I don't believe that that's the right way to do it. I would still recommend that the right thing to do is, based on your CT scan, proceed with the chemo and the radiation. You can absolutely continue doing your supportive stuff and continue that, because that's fair to do for the rest of your life, for prevention of cancer in the future. But you've got to make the all of those cancer cells disappear before you get onto a maintenance regimen of doing what you're doing, because otherwise it is going to come back. May not be in six months or nine months, but I've seen people come back a year later, a year and a half later, you know So-.
Speaker 1:And how often would you say like, okay, let's say we get to. Well, we determine we're at zero right now. You know, I have my scan comes out clean, my the DX comes out clean and we say, okay, at this moment we're going to consider you cancer free. There's a there's a, there's a place where we say, OK, this is where we're at this moment, realizing of course that I understand this cancer is very eager to come back and is likely to do so if given any kind of a chance. I recognize that and that's why we're, you know, having this conversation this way. How often would you recommend or order, you know, some kind of a follow-up test or scan just to keep an eye on it?
Speaker 2:So typically what we do once people are finished with treatment. Everybody gets a NAVDX every three months okay um, but that's benign. Nobody really ever fights me on that one no um, I would imagine you would have issues with getting scans done, but typically we recommend first year we do ct scans every three months and then the year after that it goes to every six months okay um, and then after year two, if they're really low suspicion and their nav dx is pretty clean, like it's never been up, then we can even drop the ct scans.
Speaker 2:But I get people on the other end of the spectrum where they're like I want to find out, I want to find out.
Speaker 1:We'll do a scan once a year okay three to five so and and realize I'm not. I'm trying to do the best thing for me, but I'm also trying to keep you on my team, you know.
Speaker 2:I don't want you to make bad decisions.
Speaker 1:I understand.
Speaker 2:I can't give bad decisions in my life.
Speaker 1:I have to, and that's how I got this. This is a lot of bad decisions.
Speaker 2:Do your research, I think. Read about it. I know radiation seems very horrendous. I would still encourage you after your CT scan to go talk to the radiation doctor as a refresher to kind of think about it, and then we can talk and see what you want to do.
Speaker 1:Okay, fair enough, all right, okay, oh, finally, wait a minute. I had a glitch today, so I went to get my blood work and they said there's some old bill from last year that didn't get paid and I didn't know about it and they wouldn't do my blood work. So yeah, so, so I'm set up for chemo next week, I'm set up for Monday. Yeah Well, that's what I went to was Quest, and they're saying that they had a bill from a year ago that didn't get paid. The insurance didn't pay it and I didn't know about it and they won't do it. So I could come in tomorrow if I needed to. I mean, I could just come into UCI if I have to.
Speaker 2:You can definitely just come in here and get your blood work done here.
Speaker 1:What's the earliest I could come in?
Speaker 2:in. I don't know the answer to that. I can have a jasmine.
Speaker 1:Call you about that if you could, because I'd like to just get in, get out early and just be done with this yeah, it's a saturday, drive out quickly and drive back yeah, perfect, all right, well, thank you, doctor.
Speaker 1:No problem, I will talk to you after your ct scan. Okay, sounds great. Thank you, all right, bye. All right, bye-bye. Okay. So you heard it. You know, the doctor does not want to let go of the radiation and ultimately it's going to be my choice. She's working with me, but she has her, her plan that we have to go by. So just remember, things don't always go easy and ultimately you got to make your choices. All right, thank you for supporting the show and we'll talk to you next time.
