Joel T. Nowak: Welcome to this Cancer ABCs Podcast. I am Joel T. Nowak from Cancer ABCs.
With me, for this podcast, is Mr. Mark Hall, a man who has castrate-resistant prostate cancer. Mark's journey with cancer has taken him through many twists and turns. In this podcast, Mark is going to share his amazing journey, including his experience with the treatment called Provenge.
Welcome Mark, I'm happy that you're going to join us and share your story. I guess the best place to begin is at the beginning. Would you first tell us a little bit about yourself?
Mark Hall: My name is Mark and I live in Texas. I live in a rural area that I have been a general contractor all my life, always been extremely active and healthy and I pretty rarely went to the doctor. Only when I had something wrong I go to see a doctor.
I ended up getting a divorce and then I remarried. My wife had a little more medical background being as her father was a physician. After we get married, she said "Well, there is two things you really need. You need to get a PSA and a colonoscopy." I was fifty-three years old at that point and I really wasn't totally familiar with these test so I said, "Sure, let's do it."
I went and got a PSA. Nancy and I were driving towards San Antonio and we got a call from my local physician's assistant. We don't have a real doctor in our little town but a PA and he said, "Mark" he said, "We got a scary test result on you." I'm sure it's not correct, but he said, "Your PSA came in at three thousand four hundred. Well, we need to do something." basically that was where it all started. It was a shocked.
Joel: It certainly sounds that way and that's a really high PSA. When you were first told that, did you understand the implications?
Mark: Pretty quickly. Totally. And my wife told me. I mean the gravity was, yes we understood clearly so, as we were driving into San Antonio we get on the phone and we made an appointment with a urologist. We got in there probably in three hours after that bombshell report, we got together with this urologist who was in a respected group and he looked at it he said, "This is just gonna be a testing error. So, we retested and the test came back at thirty nine hundred, it is gone up like five hundred points roughly since the first test which have been a couple weeks ago. I think we did one more PSA that came in at forty four hundred, so within a period of a couple of week this thing was on a terrible trajectory.
At that point, we did a biopsy and I had a Gleason 8 and they definitely found cancer in the prostate so that's kind of where it all started.
Joel: Now, you had this crazy high PSA which was just exploding. You went to the doctor, what were your next steps? And what the docs tell you?
Mark: I remember when we came back in to get the biopsy report and he came into a little waiting room and he sat down and I could tell by his expression and though his demeanor that it nothing was good. He said, "You have a very very serious cancer" and he said, "There are some people that can maintain this or survive this. Some people don't." He was not extremely encouraging, he's kind of implying that we probably should go on a cruise and get my affairs in order.
We also were referred to another doctor and he wanted me to go do chemo right away and my wife kind of did. I just didn't feel comfortable at that, at that point I started in exhausted search of doctors.
We went from San Antonio down to Houston to MD Anderson and we met some kind of holistic practitioners who were way out there. I think I literally went to seven doctors.
They pretty much all said the same thing and then at that point they had put me on Lupron which seem to be a consensus among every doctor that I should get on some androgen deprivation.
So, I took Casodex and Lupron just to get started. Finally, a doctor in Virginia his name kept coming up in all my research, I was calling everybody. I was just frantically researching probably two weeks after the diagnosis and this Dr. Myers, Dr. Charles Myers his name came up and I called him. We kind of started the next phase at that point.
Joel: A lot of people know who is Dr. Myers, did you go actually see Dr. Myers? And what was the result of that meeting or it's just a phone conversation?
Mark: He wanted to see me. He had an incredibly full schedule but he said that he thought my case was interesting and he wanted to see me, so he made room for us.
We flew out there on the last minute deal and actually our flight was delayed. I'm [inaudible] a little bit but this kind of important to understand Dr. Myers. The flight was delayed, we were late getting there and he stayed until six o'clock when all his patient load was done and then he saw me after hours, because we have missed our appointment but he saw me.
He took Nancy into another room and he told her said, "Look, the only way that Mark can have a chance is if I can get him into a durable admission." He wrote a four paged document showing what he would do with the plan A, plan B, and a plan C and we were thrilled to death because nobody had really given that much thought to my case up until that point.
Absolutely, I decided to go with him. At that point he put me on a hugely strong androgen deprivation program, triple androgen blockade and I was wearing estrogen patches and it took my testosterone down from six hundred down to thirteen. Fortunately, my PSA also went down. I guess they got down to less down point zero one.
Joel: Just to clarify, you had received the Lupron shot prior to seeing Dr. Myers, was that the only treatment you had received until you saw him?
Mark: I took Casodex and Lupron up until I saw him and then he put me on Avodart, estrogen and then he gave me some other drugs to help my liver combat all this, all the other drugs that I was taking. He just kind of doubled up I would say on everything. He increased the dosage of the Casodex, added Avodart, added Ursodiol and then also the estrogen. I failed to mention but I had five and a half centimeter pelvic tumors that they had discovered. That was part of the program that's recognizing that I had those tumors also.
Joel: I assume that there were some scans done after you were on this treatment with Dr. Myers.
Mark: Yeah, where I think the scans were done before I saw Dr. Myers maybe to-- I'm not totally remembering this it was like thirteen years ago but I have a note here that it says the bone scan was negative and the pelvic and the CT scan showed 5.5 centimeter pelvic tumors, so apparently that's what it was.
Joel: You had a PSA when you were diagnosed of multiple thousands and what's important I think for a lot of men you said thirteen years ago.
Mark: That was thirteen years ago roughly.
Joel: And I'm going to gather you're still with us.
Mark: Yeah, I was thinking about prerecording this in case I've passed but no, I'm here. I'm here alive.
Joel: So, I mean that's really important for a lot of listening that you're alive thirteen years after being diagnosed with a phenomenally high PSA. I think that's a take home from this podcast. If that's all we get out of this we have learned, but I know we're going to get even more.
Joel: That alone is so important to so many men.
Mark: That leads me to a thought that I wanted to share in this conversation. Dr. Myers recognized my prostate cancer as subset of prostate cancer. In other words, he had seemed a number of patients where the cancer went to the lymph system and not to the bone and that immediately led him down to a certain direction in terms of how he would treat me and I think he was the first doctor to recognize that subtle difference.
Joel: Dr. Myers a lot of men just have such tremendously positive things to say about him that unfortunately, Dr. Myers is no longer in practice.
Mark: There are a lot of other doctors that are amazing as well and I think that as somebody searches for a doctor something to keep in mind is that, Dr. Myers had been a general oncologist, but then he decided there was just so much that he wanted to focus on so he became strictly focus on prostate cancer. And I think there are a few doctors, I know a few out in the west coast, who have limited their focus to this one area and I think that type of doctor is really better because there's so much out there right, to receive through read all of the new papers that are coming out and I would encourage people to look for a doctor who specializes in the prostate only.
Joel: Absolutely. We agree with you and I think it's a great point. Thirteen years ago, you went on this significant regime of hormone therapy, can you then tell us what happened?
Mark: Sure, and I'm looking at notes, I’m sixty-seven now, I can't remember a whole lot but
Joel: I understand.
Mark: So, the basic idea was that we got down to a very low PSA for a while. We did intermittent hormonal therapy with Dr. Myers. He thought that thirteen months on and then giving your body a rest was a good way to approach it.
There's an argument that just staying on hormones is better and you know there's two school who thought on that. This particular school who thought was that you should give your body a rest and try to recover and then if you need to go back on. So that's what I did I had a couple of cycles of the hormonal therapy.
The cancer was still there, so about four years after I was diagnosed, we decided to go ahead and do some radiation and just kind of try to take out the prostate. And Dr. Myers recommended Dr. Dattoli in Sarasota, Florida.
I said, "Well, you know there's doctor here in San Antonio that would be a whole lot more convenient and closer." And I was running a business at that time, had a corporation and then I'm a general contractor, but on Dr. Myers' recommendation, I went to Dattoli and I'm glad that I did.
He did a brilliant job, so we did radiation to the prostate. I think I took three months off, came back and he put seeds in and then I took three months off and then he irradiated an area in the lymph system which was barely closer to the prostate.
There's a little story that goes with that. I should probably mention I was trying to get imaging done. There was a imaging process called Combidex, at that time where they injected tiny iron particles into your bloodstream and then did a very high intense of the MRI.
The FDA is not allowed in the United States, we were able fortunately to go ahead and fly to Europe and we did that in the Netherlands. They were able to send that data to Diatolli in Florida and that was the basis for how we targeted the lymph system because this particular test had I think four times the accuracy of a CT scan. so we could see down to like one millimeter in size. So, we were able to really identify where the cancer was in the lymph system and then target that. So, the started the phase of my radiation was actually go back and do a week or two of targeting lymph nodes and so, we did that.
Joel: You certainly had been on an amazing journey and I also like the idea that you knew exactly what you wanted. You wanted the Combidex scan and you found a way to get it because you are concern about your health as opposed to what is generally acceptable or had an FDA approval. I think that again is another important take home, we need to do whatever we have to do in order to improve and protect our health.
Mark: Yes. That makes me think about something I've neglected to talk about in this whole conversation, is that my wife was an incredible support partner through this whole thing. We did some fairly impossible journey and it would not have been done without her support and I'd be very negligent not to say. I mean, she literally saved my life you know, she and Dr. Myers.
Joel: Having the support people, family and loved ones and people who care about you and who are willing to help us along, it is so important to our finding a way to survive.
Mark: And part of that support that you're talking about is a faith community and I'd also should say that I have a strong faith and a commitment to our faith group which happens to be traditional Methodist church. But it really doesn’t matter what it is. It's a family beyond my family and their support was, I'm thinking instrumental and in giving me strength to keep going on and keep searching and knowing the people cared made it easier to keep taking those steps.
When you're diagnosed like this, darkness descends over you in a confusion and that you're feeling your way through this most impossible event. Having that support can kind of keep you going and lead you through, so I’m very very thankful to have that kind of support as well.
Joel: Terrific. Now, you've gone a lot you've had radiation and you've had seeds, what happened?
Mark: Okay, the radiation was in 2009 and then in 2011, PSA began to rise again. In July of 2012, it was up to 3.1 which didn't really concern me a whole lot having been at three thousand. that was like you know, I can handle it, but not good.
Joel: Can I interrupt you? To just give a perspective, how how low had your PSA gone?
Mark: It had gone down to undetectable to less than 0.01. That was right after the initial androgen program with Dr. Myers. We got it down to undetectable just briefly, but then it came back and then we did the radiation and then after a couple of years it started to came back up again.
I think during the radiation time it was down to undetectable again, If I remembered correctly. So, at that point when I had the 3.1, this [inaudible] test was now available in Florida, so I went to send like imaging in Florida and did the [inaudible], MRI, CT, and bone scan could not see anything.
Waited a year, PSA was up to eleven went back to Sands Lake and still couldn't find anything. Waited another year the PSA was up to thirty went back to Sands Lake and they found it. It was in the posterior mediastinum area which they found get my anatomy correct that was right in the spinal area at about heart level.
There was some lymph node involvement there and again it was a lymph system in that bone. They wanted to biopsy it but the doctors at Sands Lake apologized and said that they couldn't. It was just to delicate an area that try to biopsy, we were hoping to get some tissues so that we could do some genetic testing.
Anyway, at that point I'd needed to go back on the hormones again. We had to treat this systematically we're you know, we were hoping to find it and then maybe do something surgically or maybe some more radiation but in this particular location there was nothing to do, so we had to do it systematically and at that point there was a new drug out, called Xtandi.
I substituted the Xtandi for the Casodex and there was also new drug called Firmagon which kind of was a Lupron replacement or an alternative. It was a little more painful but I thought that it was better. So I went on with Firmagon and you had to get the shot every month which was kind of unpleasant but the Xtandi and the Firmagon did a great job and knocked me down to an undetectable PSA again.
Here I was in 2015 and at that point a local oncologist suggested that I try Provenge. Provenge is a procedure where they take your white blood cells out with a Leukapheresis and then they train them essentially to fight the cancer on a cellular level. They then put your white blood cells back in so anyway, I did three section of that.
That was about four years ago since that time I've had an undetectable PSA. So, I'm sitting here very thankful and in the longest remission that I've had and I have to thank that it's partly attributable to the Provenge treatment.
Joel: I'm actually going to come back to that because I think that that's an extraordinary response and I like to hear that. I know that there are guys who were considering having Provenge. As you know, Provenge is not a treatment that's in any way similar to those other treatments. It's not a pill and it's not a traditional injection.
Mark having gone through Provenge treatment and gone through other treatments you know that Provenge is a little different. It is administered differently than any other treatment that we have for cancer and specifically for prostate cancer. Could you describe a little bit what that process of getting Provenge was like?
Joel: And what it tried to do?
Mark: You know, the Provenge is expensive. It cost about a hundred thousand dollars unless you have insurance that'll cover it and I think the protocol for this is that, you need to have a what they call, hormone-refractory where you're no longer responsive to hormonal therapy. [This means that the PSA increases despite being castrate]
The process was it was like the easiest thing that I did in all the years, basically you get hooked up to a machine and they circulate your blood out of your body through one arm out [back in to] the other arm basically through a machine where they collect the white blood cells. And then they send them off in this case, it was to Georgia.
Once those cells are treated they send them back so they just infuse them into your body. Totally painless process. I was very comfortable the whole time. People were great, it was I could just say it was almost pleasurable doing it. You know, the worst part is the high cost of the treatment.
Joel: Just to fill in some blanks, the first step in the process is called a Leukapheresis where through the machine that you described Mark, they remove the white blood cells, How long did you actually sit on the chair?
Mark: It was three hours approximately.
Joel: Were you able to go to the bathroom?
Mark: Yeah, I think I could get up.
Mark: I had the freedom to if I chose to. It seems to me like I was pretty much stayed there for the three hours but that was certainly-- they were very accommodative and it was just an easy process.
Joel: You were able to eat? And drink if you so desired?
Mark: Yeah. Yeah. They gave you snack and liquids and stuff.
Joel: Okay, that's good. So, you did this Leukapheresis and you then got a phone call when to reappear in order to get these energize or sensitize cells. What they did is they took your white blood cells, your killer cells or T cells and they sensitize them to see the cancer as being in an invader. Now, again this what your cells that you donated or put into that machine and then back into you, what was that process like?
Mark: That was even easier than the extraction process. They just sat me down on the chair and put a little bag with a drip into a catheter-- I mean not a catheter, what do you call it?
Joel: It was basically infused back into your arm just like--
Mark: Yeah. That was infused into my arm, right.
Joel: And again, was there any pain or discomfort in that processed?
Mark: Not at all. It was very easy.
Joel: Did you experience any side effects either short term or long term from getting Provenge?
Joel: Though it was totally benign as far as how you felt?
Mark: Totally benign. I don't think I even felt tired or I mean I drove myself in there did it drove home you know, like an hour and a half. There was never really an issue that I can recall.
Joel: You really attribute, based on what you said before to now having an undetectable PSA for four years because of the, obviously this probably some contribution from your prior treatments, but specifically to the Provenge. Is that what I heard you say?
Mark: It'll be four years in November so it's like three and-- it's three plus years now. I do, I see that as a strong factor.
I've actually been talking to a doctor at the Provenge institute or whatever they call it. I really wonder if this particular drug might have more than impact on men that have lymph node specific prostate cancer because I seemed to have beyond the normal respond to the Provenge. I would like to see it made available to more men at an earlier stage in cancer and being such a benign procedure, it just seems like its something everybody should try early on rather than waiting until such a late date which is where they normally fight [use it].
Joel: Right. And I think it's also you said your other thought is that perhaps there's a difference between cancer that's in the bone as opposed to cancer that's in soft tissue or lymph nodes.
Mark: I don't know that for a fact but I wonder.
Joel: When you share that or ask that question to people at Dendreon, what if any respond that they give you to that question?
Mark: We're in contact right now and I think I've been in contact with the research doctor there and I believe we're going to have an interview coming up at some point and discuss this.
Joel: Good. Good for you and thank you for advocating for us. You've had an extraordinary response. I think it's an unusually significant response but we never know if we as an individual will also share similar response, so when we go ahead and have treatments like Provenge clearly need you to remember that.
We may be just like Mark Hall is a an outlier and super responder because there are men who are super responders and it could also be you. I think that's something we need to think about.
Given how significant and how long your journey has been, I was wondering if you had any recommendations or thoughts or wisdom that you may want to impart to other men who were either just starting this journey or somewhere along the path behind you?
Mark: Yeah, there are a couple of things that I thought about. One, I would say, that it's imperative to get multiple opinion if you're diagnosed. I would say, you may have the best doctor in the world that happens to be your treating doctors, but the knowledge base of all the different doctors is different. By visiting three or four doctors, you have one chance to do this so you need to really go out there and do your homework and get multiple opinions and you may find that doctor that just have a tiny bit of knowledge in an area that treats you slightly differently that can help you.
Related to that, it is kind of general thought that we have, my wife and I discussed this when we went to one of the larger institutions. We had a doctor and he was part of a group of doctors. There were actually seventeen oncologists or urologists in this group and the way they work, my doctor would take all my data and then he would go before the group of doctors in a certain day, might have been Mondays.
They would do like this peer review thing and they would all kind of get together and decide what to do. I could be totally wrong but I have a theory on this, that type of system leads to a very conservative approach because a doctor in that situation is not going to want to step out of the box and try anything because he got sixteen other guys watching him. I don't mean that there's a criticism, it's just the way it is.
When I found Dr. Myers, he had taken himself outside of that system. He had gone to become an independent doctor answering to nobody but his own conscience and himself. He had much more freedom to treat aggressively and I think he treated me perhaps in a more aggressive manner than would've been allowed at a larger institution. I don't know if I made that point clear but it's just the thought perhaps independent doctors could give you a more aggressive approach and I needed an aggressive approach, my case was so severe.
Joel: It does sound that way not only would I want to say that there's a lot of merit to that. I think also your earlier comment about multiple opinions is so vital and I think it's the group think that we can come up with better opinions where, you as a patient can weigh what these areas doctors tell you and either put together or some combination over their recommendations or figure out what recommendation you think might make better sense for you.
By speaking to different doctors it gives you the freedom to understand your cancer a lot better and come up with I think better solutions for you and for your particular cancer. I think that's great, Mark.
Mark Hall, I want to thank you very much for sharing your experience with prostate cancer and specifically about Provenge. I am hopeful that your four years will turn to forty more years with no PSA. I think that would be terrific. I'm not going to wish anything on you beyond those forty years, however.
Mark: Wow. I certainly appreciate that and I appreciate what you do, Joel. Trying to spread knowledge and just help other men. I think that's very important that we try to help our brothers who were new to this and need some guidance and I would say, it's totally up to you but I would say that I would be available to talk to anybody on a one-to- one basis. It would definitely want to go through you to filter the caller but I am available to talk to people if I can be of any help to any men, I would be glad to talk to them.
Joel: That is absolutely terrific and I think it would be greatly appreciated, so what I'm going to suggest and if somebody wants to have an email correspondence or if Mark is willing to have a telephone conversation with him, if you send an email to me and I will make sure that I pass that information back to Mark. You can reach or send an email to me at joel, J-O-E-L at cancerabcs that's C-A-N-C-E-R-A-B-C-S. org.
I will make sure that Mark gets a word and that he knows about it. Mark, your closing words were great. You have any last-minute things you want to add?
Mark: Well, I could end with the tiny anecdote. When I was first diagnosed, I had just married my wife. As a second marriage, we had been married for three months. I got diagnosed with this horrendous diseased and she had lost a husband before and I sincerely went to her and I said, "Nancy, you didn't sign up for this Texas has a Lemon law and you can turn me in and go about your business." I would not want-- I literally thought I was supposed to die at that point and I said, "I understand and you know, you have a way out of this if you want." And she is such an amazing person. She stuck with me and here we are today.
Joel: That's a great story. I want to thank you again, Mark and I want to thank Nancy also because of Nancy, you and I were able to speak with each other.
Mark: And thank you, Joel. Have a great day.
Joel: Thank you for listening to this Cancer ABCs podcast with our guest Mark Hall. A prostate cancer thriver extraordinaire. I am Joel T. Nowak and I want to remind you that despite having a cancer diagnosis you can continue to thrive even with cancer.
Cancer ABCs wants to thank Genomic Health for their support of the Cancer ABCs podcast program.
Have a great and healthy day.