Euvon Jones:
I am Euvon B. Jones. I am a prostate cancer patient survivor, metastatic prostate cancer, stage 4, patient survivor, former HVAC entrepreneur and quasi musician.
How did you meet Dr. Dawson?
I ended up finding out about Dr. Dawson because my wife and I, Janet, were not happy with the care we were getting from this suburban, wonderful, great clinic, but too many patients, not enough healthcare providers. And also with the way they took care of me.
So when I went to question some of the people at this very formidable hospital that she works at and I started looking for someone that could help us in our journey with me being diagnosed with prostate cancer, from the administrators to all of the people that I know at Georgetown, MedStar Georgetown Lombardi Cancer Center told me, "You need to talk with her." And I scheduled an appointment and I could not get in for about a month and a half.
Dr. Nancy Dawson:
Oh, that's not true.
Euvon Jones:
It was a good month and a half too. I was like, "Urrrr." But the thing was is that everyone said, "Oh, oh, oh! You want Dr. Dawson. You want Dr. Dawson. You want Dr. Dawson." Never met her in my life and never even thought the whole journey of prostate cancer, never knew what that was about. And by the grace of God, this formidable scientist, researcher, icon, OG, allowed me and Janet to stumble up into her office.
What were your initial thoughts when you saw his scans and PSA?
Dr. Nancy Dawson:
He had advanced prostate cancer that had spread to many bones. And obviously, he had a pretty high PSA level, so I knew that he was going to need to have hormonal therapy. I knew he would need to have it started relatively soon. I also knew he wouldn't like any of the side effects I was going to talk about, but I thought, "All right, here we are. Let's just get going."
I think you can see Mr. Jones here, the way he is and the way I am, I know he was a little bit scared and not wanting to embrace what we were going to talk about, but that's the whole thing about how you treat people is try to help them through the journey and get where they need to be so that they can start effectively treating their cancer.
What was the 1st course of treatment?
Dr. Nancy Dawson:
When you got treated, this was before we were doing doublet therapy and triplet therapy. So he got just hormonal therapy to lower his testosterone level. We started him on an injection. We now have oral pills to do the same thing, but we didn't have that then either. But we started him on an injection and we gave him a short course of a pill to prevent his male testosterone level from actually going up. We had to block that.
You do that initially because when you have a lot of cancer and you start hormonal therapy, your testosterone level goes up before it goes down. And that can actually cause a flare of your cancer symptoms and your cancer. So you always start a short course of a drug to block that flare. And then we started him on a drug to lower his testosterone. And that was what was standard at the time he started treatment.
How was the 1st round of your treatment?
Euvon Jones:
It was interesting because first off, I was in the space. I never knew what the space was. I didn't know what a prostate was, as we said before, but also I didn't even understand treatment. And I was so out of touch that when Dr. Dawson gave me the prognosis and the diagnosis, she said, "You have stage 4." She was the first person to tell me I was stage 4. And we were in, Janet and I, her office, and I said, "How many more stages were there?" And my wife almost fell out of the chair as we all looked at the floor. When we left her office, I partake a little bit, but I'm not a drinking man, and I told her, "I need a martini." And I don't drink much.
It's like that understanding of what this was, I was in fear, I was scared. Fear, scared. I guess all those words in me. And I just couldn't wrap my brain around how and why did I get in this space? Because you always go through the why. You deal with the why because you want to beat yourself up and you're trying to find something in your member that can say, "Okay, I did this wrong. I did that wrong. I did the other wrong." And once again, I know genetically speaking, family full of cancer and I wasn't eating right and I never got checked up and I didn't get screened.
So when she said, "You're going to go on this first hormone blocker and we're going to lower your testosterone." I got the fact that testosterone sets up the Thanksgiving table for cancer. It feeds it. So I said, "Okay." And I didn't know what that meant. I was at a place I didn't know what it meant. I was numb. That's the best word I know. Numb. But I was going to follow it after everybody said, "You need Dr. Dawson." I said, "Okay, okay. I'm going to do this." So that's...
And side effects, I didn't have any. I didn't have any. I was, I guess as you told me, asymptomatic. I was asymptomatic on almost all the treatments and everything I did. But I did have some bone pain and I did not eat. I stopped eating. And my wife has said the next thing to eating is three things. We love each other. We love being a husband and wife and I love eating.
How long did the 1st line of defense treatment last, until Euvon's numbers started to rise again?
Dr. Nancy Dawson:
He had a really aggressive cancer, and that's why the fact that we're sitting here together seems so amazing. His cancer progressed after a year. You normally think metastatic prostate cancer, year and a half, two, sometimes even longer, certainly with some of the new treatments, but he was on the short end. He progressed after a year, and that is not usually a very good thing that the shorter the initial response to hormonal therapy, traditionally the shorter the response to subsequent therapy. So this was not... As I said, it didn't look good. It did not look good.
Euvon Jones:
The laughter... You kidding? I'm alive. I'm alive. I get it. I was in the bye-bye factor. It's like, okay, I hope he makes his next appointment. And by the grace of God, you made it real for me, but you never said, "Look, two months..." Because I asked you, I said, "How long I got?" You said, "As long as God gives you." I said, "Well, how long is that?" "As long as God gives you."
I couldn't get... It's like we were searching for stuff and because of who she is that allowed us to trust you and to be able to bank on a journey that I didn't know I was in, I didn't know I was in a journey, but to bank on that journey came from I trust in you. And so with that trust, things escalated and got better.
As far as me, where the PSAs went and all that stuff, all I can do is remember a year and my PSAs had progressively come down, but it took about a year until the next protocol that you gave me to get into. I still went through bone pain. I had a reaction with the Xgeva, which is the osteoporosis or all that kind of osteoblast, all those blasts that happened in the bones and I had to get off of that because I had to have dental treatment and that was hanging out, so I had to stop that so that backup for the bones was not happening. And anybody, I guess they could study it, they don't get all this.
This is just kinda stupid crazy. I'm trying to get words to explain it. And for, I guess, everybody else, I can't explain it but God.
What was the conversation like when you had to tell Euvon that his PSA was rising again?
Dr. Nancy Dawson:
I tend to like to be optimistic.
One of my common phrases is anybody can be a “Debbie Downer.” Anybody. But to have somebody have a bad scenario where their cancer's progressing, I guess you could be saying, "Oh, this is terrible." But I don't know that that helps anybody. So it's like, "Okay, we got to make a change." I don't usually say... I don't dwell on, "This didn't work." I say, "Okay, well, we've got to do something else now."
That's actually where it happens that Provenge was just going through its trials. They had done a trial and it had shown some positive results, but the FDA said, "Well, we want you to do another trial." So they did another trial with a positive result and they said, "All right, we're going to approve it, but we want you to do a bigger registry because we want more information to make sure that this is really a good therapy." And so along came this registry and they said, "We're going to treat..." Well, it turned out 1900 men with Provenge and let's see how they do.
And so I said, "All right, well, here's this new treatment. It's an immune therapy. We're going to have to hook you up to some lines and take off some blood and keep your white blood cells and give you back the red blood cells. You need those. And then we're going to go and we're going to send that blood off to some factory far away and they're going to do some hocus pocus on it and they're going to give us back a bag of something called Provenge and we're going to infuse that. We're going to do that every two weeks, three times."
I can't imagine what you were thinking when I said that, but he said, "Okay."
So tell me, do you remember what you were thinking when I told you about how they were going to take your blood off and then keep the white blood cells and give back the other cells? Do you remember any of that?
Euvon Jones:
I remember that so well. I remember like it was just yesterday.
I remember that you gave us a pack of literature to read about that thick. Janet and I took this information home. We ran off copies for our kids. They didn't read any of it because it's too much and they couldn't understand it. We thought they were right there, but they prayed. They prayed. And in me listening to that, the thing that grabbed me was the fact that you thought enough of me to allow me to be introduced to something I could understand.
So coming from a technical background, I understood my immune system had broken down. I understand that basically my body wasn't doing what it was supposed to do, so I got cancer. Now, did I eat right? Did I live right and all that stuff? No, I didn't, but I thought I was. And so once you explained to me they're going to take your blood, send it to a lab, morph it in a lab, they're going to put in fighting agents, they're going to be put back in you. I said, "Shucks, come on, this makes sense."
Because she also let me know that, and I hope I'm saying this right, but I was not a candidate for chemo, radiation, or surgery. So I still have my prostate. It might not look so good, but I got it. And that being the case, the fact that they were going to do all of this for me, first off, you got a courier sitting at the collection center, Red Cross, grabs your blood, goes to the airport, puts it on a plane, flies it to a plane, goes down to Atlanta, Georgia. They work on it for 24, no, not, 48 hours, different clean rooms and morphing this thing to make this an infusion to put back in you to reboot your immune system so you could fight. So how did I feel? I felt pretty good.
Dr. Nancy Dawson:
Did any of your children say, "No, don't do that. Don't do that?" Or did they all say, "Dad, we don't know what this is all about?"
Euvon Jones:
The kids didn't care. I didn't know they didn't care because I thought they were filing through and processing. We got smart kids, but the fact that they had assurance, they had peace. I guess that's it.
How did the kids feel? They had peace and the peace had to come from... And I know we could do methodically talking about, okay, this thing, that thing, whatever you did, but the peace, I believe, it came because... I can't take credit for this. What has happened from Dr. Dawson to myself to my wife has been God.
And why did it work? She was at a symposium that we both attended and somebody asked her on stage, "What was it?" And she walked back and she said, "It's got to be God. It's God. You asking me?" And here I'm sitting with the OG.
The bottom line is that 40 some years in the space, only woman oncologists that goes and plots out this feel and you got to... I'm sorry if I'm going off, please forgive me if I'm going off script. But the bottom line is that you out there fighting, you're a beast. And by that, and for God to bless me to be able to find the beast, not be in California, but on the East Coast in the DMV and find someone that was open to do something that was different.
Because not a lot of Black guys were signing up for this thing, so they couldn't get numbers because nobody wanted to be in this. The fact that she said, "Okay, I'm going to put you on this." We said, "Okay." We said, "Okay." Because we were trusting and we trusted by God's grace and our kids praying and Dr. Dawson spending all that time way before we got, I guess, to the Provenge side of this to say, "This is going to be good for you." I don't think you'd have put me on it if you didn't believe it.
Dr. Nancy Dawson:
No, you're right You're right.
It was new and I thought this is... There's some things that you just, as you say, have to take on faith because it makes sense.
Euvon Jones:
Yes.
Dr. Nancy Dawson:
Makes sense.
Euvon Jones:
Yes, yes.
When I can have warriors inside of me that are still fighting, fighting, and I'm not walking around with a bag on my side saying, "Yeah, well..." I'm not that guy. I'm not that guy. Or, "Well, man, the side effects were terrible. But you got to go, you got to press through. We're going to have an advocacy group and all this and we're going to do this and we're going to do that." All of that, that's me because I want to help, but that's not me because that's my story.
How many treatments of Provenge, and did you have to add any treatments to the Provenge?
Dr. Nancy Dawson:
Provenge is a standalone and you only can get three treatments. It's every two weeks and after the three treatments, they don't ever give you additional treatments. It's not like that. But he made it through all three, so that's good.
And I have always called it a sandwich treatment, meaning I'm not expecting that to be the last thing I do. So we didn't stop the initial hormonal therapy and we didn't just stop at the end of the Provenge. I started him on a drug called enzalutamide or Xtandi, which is a pill. And he's been on that pill ever since.
Euvon Jones:
Forever.
Dr. Nancy Dawson:
It's not forever. It's just... Well, forever would be good.
Euvon Jones:
Yeah. Because you told me-
Dr. Nancy Dawson:
If you were on it forever-
Euvon Jones:
I asked you, "How long is this going to go?" You said, "Well, for the rest of your life." So that-
Dr. Nancy Dawson:
How long do you want that to be?
Euvon Jones:
I'll go to 110.
Dr. Nancy Dawson:
He asked me this question, and it's an obvious question, which is, "Well, I'm doing so well and I've been doing so well all these years. Can't we just stop it? Let's just stop it and we'll see how we do."
And I was thinking about that today actually and I thought to myself, "Imagine you are climbing to the top of a mountain and you get to the top of the mountain, and you're feeling really good and you're standing up there on the top of the mountain and along the way behind you are all these people who never made it to the top of the mountain. They're not out there at 10, 15 years and you're up there and you say, 'Well, I'm doing great, so I'm just going to stop everything I'm taking and let's just see how I do."
Have you ever heard if it's not broken don't fix it? I have no clue what would happen if you stopped, and I have no clue whether it would work again if you restarted it. I only know you are doing miraculously well and feeling well, so why would I change directions?
Euvon Jones:
Amen.
What was the average rate of response to Provenge for Euvon vs other men who have taken it?
Euvon Jones:
Her clinical trial shows that.
Dr. Nancy Dawson:
Well, he has this graph, which I gave him.
Euvon Jones:
Yes.
Dr. Nancy Dawson:
He came in about a week ago and we were talking and I was looking through his chart and I said, "You know you were on a clinical trial." And he goes, "Yeah, I remember that." And then I pulled it up and I printed it out and I said, "And I want to show you this curve."
I don't know if you can see this curve. This is the difference between the top curve... What's shown here is survival. This is being alive and this is time here. So we have time on the bottom, we have survival along this access. And you see the top curve was the African American men and the bottom curve was the non-African-American men.
But what I pointed out to him was how far out this is. This is 72 months, so that's... How long is that? That's six years. Okay? So these are, if you see way down here, this is 20%. So we're looking out about six years. We're looking at maybe 10% of Caucasian men being alive. And if you extrapolated maybe 30% of African American men being alive at six years, but if you follow these curves out...
And how many years ago did you get Provenge?
Euvon Jones:
12, almost 13 years ago.
Dr. Nancy Dawson:
Okay. So now I want you to take this curve out another seven years, and there's Euvon.
I don't know. He alone could not make these curves split apart, although I'm sure he statistically had something to do with the difference, but here he is.
How often did Euvon have to get his PSA checked?
Dr. Nancy Dawson:
He comes every three months like clockwork.
Euvon Jones:
Yes.
Dr. Nancy Dawson:
Now, I think... Sometimes, he's late. I'm talking about for his appointment during the day. That's not unusual for him to show up late for his appointment. He doesn't usually miss it though.
Is that true? True?
Euvon Jones:
Okay, that's true.
Dr. Nancy Dawson:
And there's always a reason.
Euvon Jones:
Of course. It's going to be reason.
Dr. Nancy Dawson:
Traffic. I don't know. It's too sunny out. It's too rainy out. I don't know.
Euvon Jones:
Oh, my goodness. Sorry.
How did you feel towards Dr. Dawson & your entire prostate cancer journey?
Euvon Jones:
God allowed an angel into our lives and for no reason did I deserve it. Did I do the things right to have it? There's no reason. I wasn't that guy that can... "Okay, I'm 85 and I'm still working out and I'm doing that. And if you will do this..." I'm not that guy. I'm not that guy. I was doing... Health wise, I was doing everything wrong. We talk about testosterone but the sugar content and the lifestyle and the burgers and the... Oh, my goodness, the toxic foods.
Just because I was given grace to not feel bad, asymptomatic, but started feeling bad, I'm at a feeling thing in reference to Dr. Dawson. She's a divine angel. You know her sister's a nun and she's a Grand Poobah of nuns. She, one of the big women that handle ones when they got to do the concave and all that.
I don't know why God... I don't know why I was put in this position, but I do know that I am. And so in that, how do I feel? I feel very grateful. I feel very fortunate. I feel quite blessed. I feel like because of your due diligence and your acumen and you're humbling yourself to go into a part of medicine that no women go into to help us arrogant, ignorant, proud, don't want to hear nobody tell us men. I know who we are. That's who I... And if you talk to my wife, she'll probably tell you I'm still there. I'm trying to get better.
But I feel fortunate because God has chosen an angel to be in our life and it's a big deal, but there are some metrics. You got to have some skin in the game.
Dr. Nancy Dawson:
Exactly.
Euvon Jones:
You got to have some skin in the game.
So I felt fortunate, blessed, and also I felt that we could trust her because anyone who would, number one, read a book that your wife wrote about you going through prostate cancer and read the whole book and then write the linear notes on the back and do the forward in the front to let us know that what we're regurgitating out was something that could be helpful for people. I don't know. I'm doing everything I can, not to be in tears because it's a life-changing thing. I felt like my life's been changed.
Dr. Nancy Dawson:
One of the things that you've done that I'm very proud of is that you have gone out and are trying to help other people understand the importance of getting treated, considering a clinical trial, just getting other men to sort of realize that this can be their journey as well. And you didn't have to be a saint and you didn't...
And okay, as I say, you found your way, the lost sheeps come back, you found your way. And this is your journey and you have chosen to use your experience and share your experience and that is invaluable. You didn't just say, "Well, hey, I did really well. I must have deserved it. I think I'll go out and have a drink at the bar and good luck, guys." You didn't do that.
You said, "I've had a very positive experience and I see that there are things that I could share that would help other men try to seek out help, get care, follow through." And you've made a huge effort to try to share your experience and I know it's made a big difference.
I've told several people about your book and I think part of the reasons you get book sales, they come to my clinic. I said, "You should read this book."
Euvon Jones:
Oh, my goodness.
Dr. Nancy Dawson:
And we have to give your wife credit.
Euvon Jones:
Oh, my goodness.
Dr. Nancy Dawson:
By the way, most people don't know this. This is a little known fact, but if you read of what you can do to have a better outcome, I don't know... Well, I'm sure your wife would know why, but it ends up that men who are married when they're diagnosed with prostate cancer have a longer survival.
Euvon Jones:
Wow.
Dr. Nancy Dawson:
There's studies on that.
Now, it's not actually the same about... It's not like men who are married have a decreased chance of getting prostate cancer. That's not what I'm saying. It's men who are married who get prostate cancer have a better outcome.
Now, maybe it's because they have wives that do research and try to make sure they get better care, or maybe when they see that you're doing some positive changes in your life, like eating better or sharing your music more, or other things that you might do, going to conferences, helping other people. But wife is encouraging you. So I don't know what the secret ingredients is, but that's actually been studied and published.
Euvon Jones:
Wow.
Can you discuss having to repeat your bone scan in 2017?
Dr. Nancy Dawson:
This is really sort of an amazing... I'm not sure why we even did... I think we talked about it.
When he got diagnosed, he had cancer in almost all of his bones. He had very extensive bone metastases. We call that a superscan, and it's not super that you have a superscan. He was been on treatment for a while and for whatever reason, we decided we were going to get another bone scan and it came back normal. Lesions were all gone. And you don't see that.
You can see it when someone is metastatic and hormone sensitive. That's when you usually get very good responses. But when a man becomes castrate resistant, by definition, that's not going to happen. So I was just like, "Seriously? This bone scan is normal?" That's where I said... That's why I say it's a miracle.
Certainly, we know you have cells that are hormone sensitive and then you had some that needed to be kickstarted with your immune system. Some of them may have been partially hormone sensitive, but it's beyond really explaining just with what we know about how we treat prostate cancer and why what works what works and what doesn't work doesn't work. It's that, as they say, that special ingredient that we haven't figured out. But whatever it is...
My sister teases me when people ask about being religious. I'm not a nun. She has said to people, "Oh, she's more religious than I am," pointing to me. I don't know if that's true.
But that being said, I have a strong faith and I don't expect to always have an answer and I'm okay with that. I'm okay with those little unexplained, wonderful things that sometimes happen. I'm just fine with that.
What is important in shared decision making between the clinician & the patient?
Euvon Jones:
Trust. Acumen. Formidable in that space. Results.
Dr. Nancy Dawson:
That's good. I agree with Euvon.
But I would say from a physician standpoint, it's important that the doctor really is knowledgeable and aware of the most current treatments, really understands how to treat the disease.
And the patient will know that. You can tell if somebody really doesn't know their stuff and it's not going to give you a lot of confidence.
Euvon Jones:
That's right.
Dr. Nancy Dawson:
So I think it's important that the doctor's responsibility to really be up-to-date on what's going on, and if they're not, to get a second opinion from another oncologist who might be a little bit more knowledgeable about what's going on, because that confidence is absolutely imperative in the relationship and the decision making. So if you don't think your doctor knows what they're talking about, you're not going to do what they say.
And then I think, at least for me, that it's good to have a little bit of a sense of humor, especially as an oncologist, because this is serious stuff, and you got to lighten up a little bit because I want to inspire my patient to feel confident, not only in what I say, but confident that they can do well. They need to be able to be hopeful and they need to be optimistic. They need to see that there's a light and that they can do well with this therapy, and that they can walk out of my office and say, "Well, why not me?"
Euvon Jones:
That's right.
Dr. Nancy Dawson:
"Why can't I be just like Euvon?"
Euvon Jones:
That's right.
Dr. Nancy Dawson:
"He's around and his bone scan's normal."
Euvon Jones:
That's right.
Dr. Nancy Dawson:
"I'm going to be that person too."
Euvon Jones:
That's right.
Dr. Nancy Dawson:
Those are, to me, the things that I think in the decision making that have to occur, at least from the doctor's standpoint is I need to know what I'm talking about, I need you to feel confident that I know what I'm talking about, and then I need to have you be uplifted and be able to go, "Okay, let's do it." And I think that's what's important.
Final Thoughts
Euvon Jones:
Wow. I could talk all day. I really could.
But one important piece is having a wife who is so supportive that she told me, and we never talked about this, we never talk about this, she said, "Dr. Dawson is the only other woman I'm going to allow in your life."
Dr. Nancy Dawson:
And she can trust me too.
Euvon Jones:
Yes, she can. Yes, she can.