Living with Two Cancers: Treatment, Quality of Life & Integrative Care

Brad Power September 4, 2024 “Knowledge is power for me, so I started to learn as much as I could. ” – Burt Rosen “You're going to give me chemo, radiation, surgery, immunotherapy, or maybe a targeted therapy. But how do I take care of Burt? Everything you're going to do for me is designed to kill the bad stuff inside me.

"Engaged patients get better outcomes" is one of our core beliefs at the Cancer Patient Lab. But what does a very engaged patient look like? Consider the story of Burt Rosen. Diagnosed in July 2022 with two primary cancers (renal clear cell carcinoma and advanced pancreatic neuroendocrine tumors), Burt has done everything possible to make sure he continues to enjoy his life.

He doesn't let himself be defined by his health issues and repeatedly pushes himself out of his comfort zone.

Whether it is camping and hiking in Glacier National Park three months after a major liver surgery, hiking when he can, traveling, volunteering, meeting tons of people, starting nonprofits, learning all about Integrative oncology, and looking for full-time jobs, Burt does as much as he can to make sure his mental health is doing great since he feels better physically when he feels better mentally. What has Burt Rosen learned?

Brad Power This is the Cancer Patient Lab and our weekly webinar series. Today we're honored to have Burt Rosen with us. Burt is a multi-dimensional patient advocate and cancer survivor. He's got a story to tell about how he's managed his own care. We've been friends for a long time, I think from even before he got all of his diagnoses and went on his treatment journey.

He's based in Portland, Oregon, where I have family, and so I spend a fair amount of time. This is for information purposes only. We're just sharing medical advice with you. We are a patient-led nonprofit, and we depend on the kindness of members and friends who donate money. If you're interested in donating money, please do so through our website. Burt Rosen 1:43 First of all, thanks for introducing me and thanks for having me.

I'm really flattered that you even asked if I would do this. It's probably helpful if I introduce myself for 30 seconds, just so you have some context. I live in Portland, Oregon. I’m from New York City. I'm one of those rare native New Yorkers that don't really exist anymore. I've been in marketing my whole life, my whole career. My passion is smaller and middle-sized companies or places where I can make a real difference in the world.

Two years ago, I got diagnosed. I'll go through some of that stuff in a minute. I have a very strange sense of humor, so I hope I don't offend anyone, but I like to say that I went to the cancer store on the “buy one, get one free” day. I have two primary cancers. I have a renal clear cell carcinoma, which is a kidney cancer, for those who don't know, and then the other thing I have is called a “pancreatic neuroendocrine tumor”.

Neuroendocrine tumors are much less common cancers that can originate in a bunch of places, but it's basically a cancer of the endocrine system. Mine originated at the pancreas, spread to the liver, blah, blah, blah. The last thing I'll tell you quickly is that, as Brad alluded, I spend a ton of time in the integrative oncology world. One of the ways I feel better is by volunteering. I volunteer a lot.

I volunteer a lot in integrative oncology because I believe that it could help so many people, and so many people just aren't aware. I'm married. I have two grown kids out of the house who both live in LA, and a small dog. So I just want to give you a little bit of context of who I am. Here's my story. I got diagnosed in July of 2022. I also have chronic Lyme disease, and I had a horrible brain fog episode.

My health had been declining for a while, so I was at a healthcare conference in Boston in May of 2022 and had a horrific episode of brain fog. I couldn't text anyone. I couldn't email anyone. If I tried to FaceTime, they knew something was wrong with me. I left the conference and flew home the next day.

Obviously, if I was smarter, I would have walked into a hospital, because I could have been having a stroke, but flew home the next day, took the next couple of months, kind of got out of my brain fog. Then I relapsed, went to the hospital in July, got admitted for ammonia buildup in my brain and for internal bleeding.

When you get admitted for internal bleeding, because it’s serious, they scan you all over the place, and that's when they found those two cancers. So I was in the hospital for about two weeks. The first priority for me there was to stop the bleeding. My wife and I kind of had a strategy we laid out, which was: phase one was just stop the bleeding, because that could immediately cause death. Phase two was to worry about cancer.

So in July, for two weeks, I was in the hospital. Like I said, I have a strange sense of humor, so, of course, we had to do some stupid things in the hospital, like put googly eyes on the urine bottle. Then I left the hospital, and it was time for phase two: to start focusing on my cancer. Neuroendocrine tumors are an uncommon cancer, so they found tumors in my liver and my pancreas and in my kidney.

Because my neuroendocrine tumor was metastatic, it was already in my liver, and there were some other spots they decided to go after that one more aggressively. The scans I get are CTs, MRIs, etc, but we also get PET scans with a specific kind of tracker called dotatate, which is a radioactive tracker that activates receptors on the outside of the neuroendocrine cells.

Once I got out of the hospital in July, I then found an oncologist at OHSU, which is the hospital I go to in Portland, and they ordered the dotatate PET scan, and that's by dotatate PET scan (on the slide above). Pretty much everything in black is what's referred to as dotatate avid which means that the receptors light up due to the tracker, so illustrations of spots that could become cancerous. Then I had my diagnosis.

I started on an oral chemotherapy agent called capecitabine and temozolomide, which is a pretty common protocol for neuroendocrine for pancreatic neuroendocrine tumors. It was great. I did it for seven months. It was all oral and at home, so no infusions. It was pretty mild. Some of my symptoms got a little worse, but I didn't really get new symptoms from the chemo.

I did it for seven months until my platelet levels dropped too low, and I was well below 100. I think it was close to 75, and my doctor said, “Okay, we have to pull you off chemo. ” After I got the diagnosis, I believe that knowledge is power for me, so I started to learn as much as I could. This is a photo (see above) of one of the neuroendocrine support groups at a dinner in New York City.

I started to go to every support group I could find, and read everything I could find. I've changed a lot since then, but it was a great way for me to learn as much as I could about my condition and people who went through it. Then I was on a scan schedule of roughly at the time of one every one to two months. They do two scans for me. One of my scans is my abdomen, which they do with contrast, and my chest, which they do without contrast.

In this month, which was March, they found a nodule in my lung, and then they thought that I had actually three primary cancers, which would have made me extremely unique, but they couldn't biopsy it because of the location and the size. They recommended, because I had other primaries, that they just remove it, because that way, if it had been malignant, at least it was gone, and if it was benign, at least we knew it.

So my doctor could treat me, not having to worry about that. I had lung surgery in April. ” I got to go to my daughter's graduation, which was pretty amazing. One of the themes for me that you'll see a fair amount is that even though I'm living with this crap inside me, I'm still trying to enjoy my life every way I can. Then, after my daughter graduated, hopefully no one's too squeamish, I had my liver resection.

In June of 2023 I asked my surgeon to take pictures of what they took out of me because I was curious. This is him holding the left lobe of my liver, which they had to remove. They removed the left lobe and 17 tumors out of the right lobe and my gallbladder. They were actually supposed to remove my spleen and my pancreas, but I lost too much blood, but in any case, I had the liver resection in June.

If anybody wants more tumor pictures, let me know. I'm happy to share them. One of the lessons I learned here was really valuable: a lot of people in the cancer world just want to get it out of them as fast as possible . And I have friends who are like this too.

I had this liver resection in June, and the surgery itself, they couldn't do everything they wanted, but the liver stuff, which is the most important, they did, and thought they made good progress. But I came out, and as I was in recovery, they realized that nobody capped my IV, so I got a bunch of air in my bloodstream. They had to re-intubate me after I was already in recovery for about a day and a half.