Dr. Samuel Ward Casscells Video (Text Version)
Patient Representive
Dr. Howard Soule
Our final speaker is actually our Patient Representative but he’s more than just a patient; he’s actually a doctor as well. So we—we have the—the real pleasure to have Samuel Ward Casscells who we know affectionately as Trip, who is a Board Member actually of the Prostate Cancer Foundation, a scholar at the Texas Heart Institute who had the calling—heard the calling of his country and took the position as Assistant Secretary of Defense for Health and went to Iraq at least one time that I know of and perhaps another as—as a physician who cares a great deal about our troops, so thank you for that. And thank you for your perspective on prostate cancer.
Samuel Ward Casscells, M.D.; Board of Directors, Prostate Cancer Foundation, former Assistant Secretary of Defense for Health Affairs
Thank you Howard. I know the hour is late; I want to thank also Captain Chris Daniel and Captain Kaime and Dr. Carolyn Best and particularly my Dr. Logothetis, who is the major reason I’m here today, 10 years after my diagnosis. There’s been a lot of progress as all of you have heard today. But there’s a long way to go. And there’s been a lot of focus on the positive, so let me focus on where I think we need to go.
We have a new threat and I’ll come to that in just a second. The Prostate Cancer Foundation threw me a lifeline 10 years ago with the fabulous work they’ve done on diet research which still has a long way to go and is woefully underfunded. The Prostate Cancer Foundation also began to make noise on behalf of prostate cancer patients. Most of us older guys who had a job and things to do were raised in the tradition of—of stiff upper lip, just keep going, keep your head down, don’t lie down in the street and block the Congress and block traffic and squirt blood at people. That wasn’t the way we were brought up. And as a consequence, we were left behind.
Diseases like breast cancer and HIV still get many, many times more funding than prostate cancer, despite the progress. Sometimes in advocating for prostate cancer on Capitol Hill I’ve been told, well really Dr. Casscells isn't it mostly a disease of grandfathers? I said yes it is, but these days many of these grandfathers are running companies. You know I’ll give you the names of several who are—have at various times run our country and are defending our country in the military and many of them are actually serving as fathers because their daughters are divorced or because their son-in-law has died or one thing or another, and so they’re fathers a second time. And their kids—the grandkids who are really their kids now really need them. So I don’t buy this that they are just on the golf course frittering away the last decade or so. They very much need research and care.
I want to thank the Department of Defense; of course I used to sponsor all this research. I put quite a lot of money into it; now I’m the beneficiary. But it’s still not enough. Yet the Department of Defense put together the clinical trials consortium without which we wouldn’t have many of the medications you’ve heard about today. Let’s list them really quickly; Denosumab, Abiraterone, MDV3100, Ipilimumab, XL184—these were not sponsored, shepherded, championed by the National Cancer Institute. That’s a different organization where the focus is on doing basic research that’s going to win a Nobel Prize. It’s to treat our children; it’s not to treat us. It’s the DOD Prostate Cancer Consortium that’s working on medications for us. And we have to stand up for them as they’ve stood up for us. And that’s the threat I’ll get to in a minute.
Last year we enrolled about 600 patients in clinical trials and yet 30,000 died. Let me say that again; 600 patients were enrolled in the DOD clinical trials consortium and 30,000 died. Is it just because of money? Is it because some of the patients were passive? Is it because pharmaceutical industry is not fully supportive? Is it because there aren't enough prostate oncologists? It’s all of those things. We need more patients in clinical trials. As more patients enroll in clinical trials, the pharmaceutical firms get more interested. As progress develops, everybody gets more interested. And young investigators move into the field. So we have to get more people enrolled in trials, and that means us, the patients, have to be more active in that regard.
Let me tell you about two patients. Last week a—a friend came to see me very, very depressed. He had come back from a visit to one of the top doctors in prostate oncology. I obviously will not name him. He was at what many people consider the top medical center in this country. He said he was told he had 18 months at best—probably less than that because he had failed Taxotere. I said Jack—that’s not his real name; tell me about your diet. He said a regular diet. He’s not on the milk and ornish diet. I said are you taking Vitamin D? Are you taking any herbs? He said no, no; none of that stuff is proven. My doctor said that. Have you tried Avodart; no; Strontium 89, no; Platinum drugs, no; Provenge, no; Denosumab, never heard of it; Abiraterone, how do you spell that; MDV3100, what? It’s numbers and not even a name; Sutent, Sprycel, Ipilimumab—my god that’s a mouthful he said. XL184—another god-damn number; he said give me something that’s proven. I said Jack, have you ever even been in one clinical trial? He said no; I got a good doctor at the best medical center. He has a lousy doctor at the world’s best medical center. It’s a shame and as a physician I was personally embarrassed and as a patient I was furious.
Let me tell you about another patient who went to see a new internist the other day. The patient was describing his regimen. The doctor said what’s your regimen? Exercise, low cholesterol, vegetarian diet, Vitamin D, Zocor, Co-Reg, Micardis, aspirin; oh my you have a lot of heart disease don’t you? You must have a very good cardiologist. The patient was me. I said no; I have no cardiovascular disease whatsoever and I don’t have a cardiologist. I am a cardiologist. I said I have bad prostate cancer. He said what? I said yeah; but I have a very enlightened oncologist who knows that many of these medications are useful for prostate cancer and 10 years ago he had me taking statin drugs and aspirin and a beta-blocker and an Angiotensin II receptor inhibitor and low cholesterol vegetarian diet, exercise, sunshine—this was for prostate cancer and not for heart disease. The internist scratched his head; I’ll take your word for it.
When I went to see Dr. Logothetis 10 years ago, I was 49 years old. I had a PSA of 100. Three very good doctors in Houston, Texas, where I was Vice President of a big medical center there, had missed my diagnosis when it was at a curable stage. They were all friends of mine and employees of mine. I couldn’t sue the bastards. And I liked them. And one of them is still one of my doctors. But it was just a damn bad break. I went to see Dr. Logothetis; I went in the front door and fortunately I knew the President of MD Anderson. He said you’re going to see the best doctor in the world at this disease. His name is Dr. Logothetis. I—I said I—I don’t even want to try to spell that. Where is he from? He said he’s from Greece but he’s an American and—and I said—and he says you won't really understand what he’s talking about. We don’t either but his patients live forever. I said okay. You know I’ll take your word for it.
I went to see him; I finished seeing him at 9 o'clock at night. I was an add-on patient. I said this son of a gun is a hard working guy. And he examined me and he said to me, you have stage five disease. I said Dr. Logothetis, I’m a doctor. I looked at this—I looked this up today when I got my PSA test. I said there’s only four stages. He said you have stage five—very high Gleason score, supersaturated scan. Had I known then that I would go on and eventually have no response to Abiraterone and no response to MDV3100, I would have put a gun through my head—a bullet through my head.
He said we’re going to get you fixed up and I think you’re going to live 10 years. I can almost guarantee it. I said nobody is giving me more than 3 years for this disease. He started with Ketoconazole and Lupron and—and chemotherapy. I went back in with all the literature stacked like this. I said Dr. Logothetis there’s not a single paper that shows the chemotherapy works. He said those trials were stopped prematurely for lack of enrollment. They were using bad end points and they weren't using the drugs in combination. Chemotherapy will work for you, and it did. He said we’ll bide time because there are new drugs in the pipeline and that’s exactly what happened.
Right now we face a severe threat. The Department of Defense has leading people, particularly now that I’m gone, who are saying this; prostate cancer research is not a core mission of the Defense Department. And this in conjunction with a decrease in NCI funding, which is likely is a very grave threat to us, we’ll begin to see that probably in October when the new fiscal year ’12 comes through. I disagree strongly with this. I said before that the DOD Prostate Cancer Consortium does something that the National Cancer Institute does not do. They both do them well but the DOD Prostate Cancer Consortium is why many people in this room are alive. Let me mention a few people who have had this disease who’ve been in the military. Bob Dole, Senator Stevens, General Schwarzkopf, General Colin Powell, General Dave Petraeus, now leading our troops in Afghanistan and there are a couple others who I’m not allowed to tell you about because they’re private about their disease. They’re higher in our government, okay. These are people who are very actively looking after our country today.
So we face three—three threats and I’ll wind up—potential falling budget for prostate cancer research; some doctors who either don’t know or don’t care; and patients who are a little bit passive and have to get active. So here’s my prescription as a doctor to fellow patients, study this disease. Ask your doctor a lot of questions. Insist on enough time with your doctor. Enroll in clinical trials. I’ve enrolled in five of them and write your Congressman. If we do this, this disease will become in the next 10 years something like athlete’s foot. We may never get rid of it but we’re not going to lose any sleep of it.
Thank you for all you’ve done; thank you for allowing me to vent a little.