One Man's Journey Feat. Mr. Faulk, Kyla Nixon, & Dr. Osborne

Dr. Reggie Tucker-Seeley:
Welcome to Prostate Cancer Uncensored, a podcast produced by ZERO Prostate Cancer . My name is Dr. Reggie Tucker-Seeley, and I am the Vice President of Health Equity here at ZERO Prostate Cancer. As part of our Black Men’s Prostate Cancer Initiative, we have had several conversations in our podcast series, one with the leaders of the Black Men’s Support Group, and one with an advocate, Mr. Grant Hill. It is my pleasure to introduce our next conversation.

A member of our Health Equity Task Force, Dr. Joseph Osborne, a radiologist who is the Chief of Molecular Imaging and Therapeutics, and a professor of radiology at Weill Cornell Medical School, recently had a conversation with one of his patients, Mr. Faulk, an African American prostate cancer patient about a recently FDA-approved radiopharmaceutical medication used for the treatment of Metastatic Castration-resistant Prostate Cancer.

Dr. Osborne, Ms. Kyla Nixon, a radiopharmaceutical research technician in the Department of Radiology at Weill Cornell, and Mr. Faulk discussed this new treatment. They also discussed the eligibility criteria and Mr. Faulk’s experience with this new treatment at Weill Cornell, including side effects. We at ZERO are committed to uncovering the pathway to healthcare equity for prostate cancer patients and survivors and their families. Fortunately, Mr. Faulk had a very positive experience in the healthcare delivery system with positive results. It is our pleasure to share this conversation with the ZERO community.

Ms. Kyla Nixon:
Hi, Mr. Faulk, how are you?

Mr. Faulk:
Hi, how are you today?

Nixon:
I’m well. Welcome to our Prostate Cancer Uncensored podcast that’s produced by ZERO Prostate Cancer. I’m Kyla Nixon, and I’m here with Dr. Osborne.

Faulk:
Pleasure as always. Yours and mine.

Nixon:
We’re here today to talk about the new innovative treatment, lutetium PSMA treatment of Metastatic Castration-resistant Prostate Cancer. We’re so happy to have you here. Thank you.

Faulk:
Thank you. Thank you for having me.

Nixon:
All right, Dr. Osborne, just go ahead and introduce yourself. Tell us a little about yourself.

Dr. Joseph Osborne:
Well, I’m Joe Osborne and I’m the Chief of Molecular Imaging and Therapeutics. It was my absolute pleasure to start doing the lutetium PSMA therapies this year when it was approved by the FDA. My intent in doing so was, of course, to treat all patients with prostate cancer who need this therapy, but also I had a special interest, which was looking at African American men like by me and my father who have a disproportionate burden of prostate cancer. Also we see other pockets of need, veterans, people who potentially are in low socioeconomic status neighborhoods.

People who are older than 65. It really was broadly a question of access. I wanted to make sure if we had the best available treatment, we also are able to give it to everybody. Because that’s what as a physician I should do.

Nixon:
All right. For you, Mr. Faulk, how was your prostate cancer journey? When were you diagnosed and how did you end up at Weill Cornell?

Faulk:
Oh, I was diagnosed approximately 14 years ago, going on 15 years ago. At the time, one of my friends had prostate cancer and he suggested I get tested, and I let it go. I didn’t do it until there was a problem. I had a very type pains in my back, it caused me to go to the doctor. We found out from tests at that time that I had prostate cancer. PSA at six, they started to treat for cancer. Mine was, at the time 650. In a week, it went to 1350. It was very fast-moving, aggressive, and just taking over.

They gave me three months to most, three years — I say that’s 14 years ago now. Because of good doctors like Dr. Osborne and my oncologist, my urologist, and my pilot practitioner, we were able to come to various treatments that were minimal compared to maybe my condition, perhaps of my age. I’m 77 now, so you do the math. That’s one of the reasons I thought was rare inoperable.

When I say rare, half of the prostate, the prostate is in two halves actually. Only one-half had the cancer, the other half did not. Like I said, they said was red and operable. We went for treatments and to try to keep them at a minimum. I don’t want a strong chemo that would cause you, I don’t care about the hair because you lose it anyway, but the physical effects of it and degrading now, just loss of weight, loss of motivation, these things like that also was a part of the treatment from some of these chemos.

It was not that aggressive, but it was successful, but I have had several– I had made notes and had names, but I’ll pull that at this time, but I went through each treatment. They have a longevity and it’s limited. It has helped you, it gets to a point where there’s no longer side effects. I had about three or four different types and they had all run together. Here I was without treatment maybe six months and half a year. This is going back to last year. My oncologist, Dr. Dorsey suggested that I see an oncologist here. Dr. Nas, who introduced me to Dr. Osborne, I was thankful for that.

Introduced finally she said once it was accepted here for use in this country. Because I think it came from out of Italy. We began with the treatments with what I call Pluvicto you call the right name. When I started to take the Pluvicto, I was basically bedridden, plus I had no treatment for six months. It was wearing on me. It was hard to even get up. I brought myself to eat, pull myself up, figure out how to sit up in bed. See, one and a half days after the first treatment with Pluvicto, I was up out of bed making breakfast, moving around. It was an immediate response physically. For me, it was a revelation.

God only could have provided me with something that could do this for me. Needless to say, I was very pleased with that. This continued. Oh, the first day, I said a day and a half. During that first day, I was nauseous. I did to some extent smaller, and after that, no side effects that I was able to notice, except that I learned over time that you lower your white blood cells. Other than that, I haven’t felt it physically. Physically, I felt very strong since the first, this is now, today I’m going to have my fifth. There’s six treatments, six weeks apart. This is my fifth treatment today. I’m so very thankful.

Nixon:
Well, that’s good news. Speaking of the Pluvicto, how was it decided that that was the best treatment for you?

Faulk:
Well, I think wise men like Dr. Nas and Dr. Osborne came to the conclusion that having seen the various types of treatments that I had gone through, there was nothing left. There was nothing left basically as an alternative here, if I say this came from Europe, I understand. It had to go through the windows of being okay, you say approved. That’s the word I’m looking for. Once it was approved, they said, “Hey, let’s try this, see where it’s at.”

I think that was one of the patients you were treating with it at the time, but they had a couple treatments and was very new. I was very excited. I’ve been so thankful for Dr. Osborne and Dr. Nas; this type of treatment so far which continues to be very helpful.

Nixon:
I’m glad to hear that. Dr. Osborne, is this treatment now available to everyone?

Osborne:
This treatment is available to everyone who fits their eligibility criteria. It’s becoming more available as more doses are able to be synthesized basically. I have to include one really important person. That’s Mary.

Faulk:
My wife.

Osborne:
Because you were our second patient starting back in May and by the time you came in we were already on first name basis with Mary, right? Because she had called many many times on your behalf because it requires chains of trust among the physicians. I know with the other doctor, he is looking and trying to find people who he could help. Also, in the first iteration of this treatment it is the caregivers, it’s the relatives, it’s the family, it’s the community that comes together and says, ”This is going to work, this is going to be good. This is somewhere you can go.” I have to say as a provider from our people who have been scheduling like Sheila Robinson who is one of our schedulers.

Sheila always comes to me and even the week before you come and she says, ”Mary called and this is what we’re going to do.” Everybody is very engaged in the process of making that happen.

Faulk:
Lady was here at that time.

Osborne:
Lady was here. Between Lady and Sheila there’ve been so many tears of joy. Even when you have to been here [chuckles]. This thing worked out very well. I definitely with Sheila and Lady and Mary want to say it’s community that has actually made this happen. Everybody should have that same community. That everybody will get it. Part of the eligibility is that the doses are available but we have to find a way to make sure everybody knows that they’re available. How to get to them.

Faulk:
That’s right.

Osborne:
For us as physicians, how to get to people because it shouldn’t be on people to weave through hundreds of pages and internet links to find us. We have to be out there.

Faulk:
I’m hoping the podcast will help do that.

Osborne:
That is exactly what my hope is that people see that these are things that are possible. Because there’s been some great days and before that there were some dark days.

Faulk:
That’s true.

Dr. Osborne:
The way to potentially get out of the dark days is to look and connect with us. I hope.

Nixon:
What would make someone a candidate for the Pluvicto treatment?

Osborne:
For the eligibility right now, it’s mostly having a number of other different therapies eventually fail. As you said, even when they work, they usually work for a while. Then the efficacy versus side effects, things change. Another therapy is the next thing to do. When I started doing this about 14, 15 years ago, there was basically like one thing [chuckles] and if it did work it was tough. Now they’re six or seven or eight things. It’s up to the nurses and the doctors to say, ”Here are eight options this is how we’re going to do this first, this second, this third.” Pluvicto right now is usually one of the last things because of the side effect profile which is really not much if it does help people it is really quite something.

Faulk:
Quite something without a doubt side effects are filled up. You’re making me coughing. Sorry about that. It lowers the white blood cells. This is something that needs to be maintained and the doctors here are in effort to do that. Full treatments that I’ve had partial or lesser amounts of the treatment depending on my white blood cells by my blood tests which I give the blood and they analyze it before I’m okay to take the treatment. It’s being monitored very closely.

The lower of the white cells, the mucus this is minimal compared to my ability to get up and move around and be a productive part of my home life. Which is environment life – it takes a network. I must say that the bedside manner here at Weill Cornell has been exceptional and it helps towards the healing process not just Pluvicto or any treatment. The people that you administer and talk with you and treat you. That’s been unbelievable. Just like the Pluvicto has been and I appreciate.

Osborne:
Thank you. We definitely appreciate you and your family. When you came in the second time and you did a little dance routine with Lady.

It was like crying everywhere.

It’s mutual.

Faulk:
I had to show up a little bit.

Nixon:
Did you come across any barriers when you were trying to get your treatment either here or at your other location that you were at previously?

Faulk:
No. No barriers. Only waiting until they were able to get it here. It wasn’t even here and then the approval. No doors, all the doors were open. They were like,” John go. Go ahead and get this.” Because we believe this is new but it doesn’t mean the eyes weren’t on it for a long period of time. Medical eyes. They had a very good obviously feeling about its ability to do what it has done for me. In this case, my case at least. It’s been absolutely correct in long time. Maybe I’m more suited, I know every individual’s different. I don’t know exactly. For me, it’s been a revelation as I mentioned.

Nixon:
Dr. Osborne, in what ways are you and your team working to navigate those barriers that Mr. Faulk has mentioned?

Osborne:
The first thing is to acknowledge that physicians and hospitals are a part of it. They’re a part of the actual barriers. It’s not just, oh, patients are reluctant. When you say you can help someone and your people aren’t actually all that reluctant to be helped. Physicians will frequently say that there’s reluctance, it’s not. It is up to us to learn about the product, to figure out how to do it and how to push systems, how to push hospitals. The people who are employed here are terrific but it doesn’t mean we don’t have to push the hospital system to do better.

Faulk:
I see.

Osborne:
It means that we have to be out there in support groups and survivor groups, and places like ZERO putting the word out. If we’re not doing that, then it’s not something that people necessarily know about. It was just approved. There are many places where things weren’t started early where they’re still waiting to do the first patient. For us, we had done research for some time starting with Neil Bander and Scott Tagawa on PSMA.

We were very familiar with what it potentially could do. We definitely were an early adopter but everybody should be on this bandwagon as far as I’m concerned. Who has the ability to do it safely because safe is everything. You have to make sure you doing positive things. We do not hurt. If it can’t be done safely then it shouldn’t be done.

Faulk:
That’s just one of the reasons that I appreciate the scanning after treatment is very key. I see the care and following up and seeing how is the body reacting today, this time, and each time. That’s very helpful.

Osborne:
I have to say my colleagues of medical oncology Dr. Dennis and Dr. Nassif. They’re part of the safety. They’re seeing you making sure your white cell counts are what they should be and your general health. For physicians also, one physician does not do it, is actually a team and you have to trust the rest of your physician team to do the right thing. That way, we can move along and get everything done.

Faulk:
Here’s been really smooth I must say. I appreciate that.

Nixon:
The side effects you mentioned, you said just the cough and the white blood cell count, Dr. Osborne, are there any other side effects that patients should be aware of before they enroll in this type of treatment?

Osborne:
Sometimes patients, oh many times because it is a treatment for advanced prostate cancer. People come into the treatment with other treatment-related problems. Sometimes they have a difficulty with their urinary system, and so we have to be very clear and understand what their kidney function is and whether they can take the treatment, or their platelets, or their white cells. It is very important for us to look at how someone comes into the treatment because sometimes it is those things where we just don’t want to push it any further.

I think if people came in without that, we would see very few side effects. Everybody is an individual here. We have to listen very carefully to what someone is saying because there is no pattern like there is with other types of treatments.

Nixon:
Your process for managing and navigating the prostate cancer treatment, was it made even more difficult with the COVID-19 health pandemic?

Faulk:
Oh, yes. I don’t know about the pandemic. It seems like the pandemic, you don’t know if it’s still existing now or it’s not. I came into this after it supposedly had subsided pandemic-wise. I was tested positive about three or four weeks ago. I have had no symptoms, asymptomatic. Whatever Pluvicto is, it’s definitely not a drawback to having being tested positive, but perhaps it has helped because I was asymptomatic. I felt nothing whatsoever different. It lasted for a short period of time. I now tested yesterday, and it’s negative. I came through it unscathed.

I don’t know if because of Pluvicto or certainly not, it didn’t have anything to do with getting or coming down with it, certainly because of the severity of these in my experience of it. My daughter was positive a year or two ago and we almost lost her. The experience is very different for me. Whatever my blood is, it’s strong enough to withstand COVID-19 with Pluvicto as far as I’m concerned.

Osborne:
We were very concerned for you in between the doses when we heard about it. It seems like whatever is thrown at you, you throw it right back, a fabulous attitude.

Mr. Faulk:
God is good.

Osborne:
You’re right, it’s rare to have some of these things happen, but we’re grateful that the good side sometimes seems to happen to you, and we’re thrilled to have you.

Faulk:
I hope that you use some of this information as your study on this treatment with your patients because it can be helpful in that way, “Well, this is what this one experienced, ” or “we don’t know what this one is, probably this is this,” and make a record of it.

Osborne:
We definitely do. We always look at all of the information. For me, personally, when I joined the Moderna Phase 3 trial, the reason I joined the trial is because they needed to know and include African American males this time, and African-American males with mild hypertension. People knew with the vaccine that this is a group that was included. It’s very important to be a part of it because without being a part of something, things can’t be measured.

Nixon:
A very popular topic right now in medicine amongst cancer researchers and providers is health equity. Just wanted to ask you or get some insight on your experience. Do you feel as though your navigation throughout the medical system with prostate cancer was equitable?

Faulk:
I feel without a doubt, I feel it’s equitable. I have been treated with nothing but kindness, professionally manner and caring. I feel like through this whole process, those who I put my health in the hands of have been very forthcoming, have been very honest, to a fault maybe, but I like to hear it like it is. Again, I have to speak about bedside manners. Everyone that I have experienced here and my oncologist and my neurologist and the personal care doctor, the door is open. They are looking to interact with other physicians in the field and to make things happen for a positive end.

I think that they don’t have on their mind, “Well, I got this ego. I have to heal this person because that’s what I do. I’m good at that.” I don’t get that. I get that their mind is open to the research behind what they’re doing, and they’re opening the doors to accept other researchers,1 and what their results have been and what do they think. It’s like a concerted effort on a mental, intellectual, scientific level to determine what you have in this patient behind you, as far as I’m concerned. No complaints whatsoever.

Nixon:
That’s great. Dr. Osborne, do you have anything to add about health equity in regards to actually getting Pluvicto treatment for African American men?

Osborne:
I think that we’ve seen the data for decades. There is a big disparity in terms of outcomes for African-American men. We’ve also seen the data, and that same data has shown us that when African American men are included, they do almost just as well. There are some differences, but I wouldn’t go as far as to say it’s a disparity, it’s just a difference. This is just one group that I focus on. As I said, there are many groups. But having inclusion and getting it to everybody is the goal. The goal is that when we see someone, they have your experience. Regardless of who they are, they have your experience.

I would say that what you said is very important, everybody’s got to shelve their egos. The egos have got to go. As important as it is to do this as a physician here or with Health Equity, it shouldn’t matter where are you, I should be able to do this also anywhere. It really shouldn’t matter. That’s our goal. That’s why we’re doing this. It should be something that is accessible to all so that we don’t really have to think about equity and savings.

Nixon:
Mr. Faulk, do you have any advice for other patients who may be going through your current journey?

Faulk:
It really came to me that they should keep a positive mind, think positively, really believe in not only the doctors, but in yourself, in your ability to accept what is told to you and what is provided for your treatments. To have a positive mind about the outcome of it because I think that healing starts from within, that’s the foundation, I would say. The things that happen to help that foundation stay strong and to build on it are things that the other physicians can provide for you as a patient.

I think that once you give that up to those around you that are physicians and that are health orientated, you’ll be going a path towards a good end. When I say end, I mean a beginning of life as you may have known it before you had this ill health.

Nixon:
Dr. Osborne, do you have any advice for patients, providers, or researchers that you’d like to advise them?

Osborne:
I think my advice for our providers – I also reiterate what I had spoken about before. It’s important to understand that we’re a very important part of the process. Part of that process is acknowledging that we could do better. Not that we’re not doing well, but that we can do better because you don’t know what you don’t see. Just because it seems like within your sphere everything is perfect. Doesn’t mean that there is someone outside of the sphere who can be brought in.

One has to think about the totality of what’s out there, and everybody’s experience, and try and bring them to this point. The positive attitude is very important because that is part of the process and part of having positive attitude is knowing that people are treating you in that way.

Faulk:
That it’s very important. I want to add that please share your experience that you go through with decisions to share.

Nixon:
Do you have any advice for family members or spouses or a patient who would be undergoing the Pluvicto treatment or treatment similar to Pluvicto?

Faulk:
One thing to do is give my opinion on– People are different, family members just need to be loving like they have been, hopefully, and caring about the patient’s mental health as well as their physical health. You do go through psychological and variances in how you feel and see even yourself. If your family members can be a little understanding during this time, because you may be irritable, you may not feel like talking, you may be off. You may experience deep thought, depression, various things of that nature. It’s helpful that those around you understand that this is part of the process, and perhaps part of the patient’s process of healing to go through this gymnastics, so to speak.

Just be supportive as possible and be like my wife on your appointments, when should you make who uses this and how long would you be there? Book that garage over there for your car so she can be on time. [coughs] Excuse me. Some administrative help to your family member who is a patient is also very helpful as well. They just keep more point to keep you sane because you know what’s happening with your loved one and to be educated on the treatments and possible side effects. To watch your loved ones and see if things are changing and to react to physicians and also the patient as well. Have conversation about it and sticking under the rug like it’s not happening.

Oh, he’s all right, something like that. Those are the things I would suggest. As I say, each person is different but that would be helpful if they could take that approach.

Nixon:
Thank you. Dr. Osborne, do you have any closing remarks?

Osborne:
Well, I just want to thank you.

Mr. Faulk:
It’s a pleasure.

Osborne:
It took us a little while to get this podcast.

Mr. Faulk:
Thank you for pursuing it.

Dr. Osborne:
For sure, absolutely.

Dr. Reggie:
Thanks to Dr. Osborne, Ms. Nixon, and Mr. Faulk for this discussion and for introducing the patient experience with this new radiopharmaceutical treatment for Metastatic Castration-resistant Prostate Cancer. If you have any questions or need more information, please check out our website at zerocancer.org