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Advanced Prostate Cancer: Gary’s Clinical Trial Profile

Advanced Prostate Cancer: Gary’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Advanced prostate cancer patient Gary was an athlete in the first Oncology Olympic Games in Rome. Watch as Gary shares his prostate cancer journey, benefits and knowledge he’s gained from clinical trials, and his advice to others considering participating in a clinical trial. 

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

Gary: 

My name is Gary, I’m 66 years old and in January 2011, I was diagnosed with stage IV metastatic prostate cancer. 

I started my journey after the diagnosis, It was quite hard to take because I didn’t have symptoms, and it was a complete shock, and I found out by accident by being in hospital with pneumonia. When I found out, the team came around to talk to me, and they said there are lots of things open to me, like new medications, chemotherapy, radiotherapy, and clinical trials. So it started off very positive, and that made me feel positive about it as well. I started off on hormone treatment and my PSA over a few months went down from 255 down to 12. In October of that year, I started on an infusion every four weeks to strengthen the bones and stop osteoporosis. So that was an important move. Then my PSA started rising again, it crept up to 83. So I was only on hormone treatment, and that was when they offered me the PREVAIL trial. I looked up on the Internet about the trial when it was a trial that was known as MD-310 at the first stage of firm tests in America, and then they were rolling out the stage two tests, so I discussed it with my family. 

And we decided it would be a good move. And so I signed up for the clinical trial, and I started the trial on the 23rd of December. Being a 50/50 placebo versus drug, I didn’t know whether I was going to be on the drug or not. Come the new year after of couple of months, I started feeling better and my PSA started going down again. I felt more energetic and my consultant agreed with me when I said I thought I was probably on the drug because there’s a difference. It actually was the one thing that I’ve done that changed my life because I had a future, I felt better which I was a bit worried about doing because of the prognosis when they said it was up to two years depending on if I go to a good treatment. And the longer I was on the drug, the better I felt. I had side effects. I was clinically castrated by the drug, because it cuts off all the testosterone apart from that. 

I had a very, very good life. My wife and I’ve been married since we’ve been 19. We got married in 1974, and we’re solid as a rock. She is my rock all the way through this. Sometimes it’s harder for her, I think, than for me, because she’s watching what I’m going through. But after I’ve been on it for so long, we got really confident, and life was completely normal. And then came my first grandchild in 2014, and closely followed by the second one, two years later, and then the third one last year in lockdown, and they have made it such of my life such a joy. So I’m so thankful for deciding to go on a clinical trial. I would recommend clinical trials because you’ve got the basic treatments, but clinical trials can make a big difference, because although they are not tested drugs they’re probably the drugs of the future. 

And you can get on the ladder early and be on these drugs, and instead of giving it…giving me about three years, it worked for nine years. So it gave me nine years of worry-free life. I’ve had my ups and downs, I had some phases of [inaudible] radiotherapy here and there, but it was…it really did make a massive difference to my life. And I don’t think if I hadn’t gone on that clinical trial, I don’t think I would have been here now.  I relish every single minute I’m here and if another clinical trial, that would suit me came up tomorrow, I would definitely think about going on that one as well.  

Advanced Prostate Cancer: Willie’s Clinical Trial Profile

Advanced Prostate Cancer: Willie’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Prostate cancer patient Willie was diagnosed in 2021 at the age of 65. Watch as he shares his prostate cancer story from diagnosis to how he’s doing today, his experience with a patient navigator and a clinical trial, and his advice to both Black men and to all others with prostate cancer.

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

Willie: 

My name is Willie. I’m 65 years old. In 2021, I found out that I had prostate cancer. 

 I would like to explain about the experiment that I went through in prostate cancer. Some that was, I was afraid of because that word cancer and that word to me, out of all my life, I done heard that, all I thought about was death. It kills you. You’re not going to live. And I was trying to find out where and how I got cancer, and I didn’t get no idea until I was able to sit down, talk with my navigator and what procedure I would have to go do in order to help me with my cancer. So they gave me some choices. One I didn’t like because I had to be hung upside down for four hours, and I didn’t think I can do anything like that at my age. And next, they told me cancer, radiation, and I was scared of that because it was like burning fire. And I had seen other people how it done them and their skin, and it put fear in me. So, I decided to go and talk to my doctor. 

I want to be healthy. And when I started my cancer treatment, it was the scariest move. When they put a gown on me and laid me on that bed, they put these machines on me, and I had to lay there, and they mark me where they want to set it up, or where the cancer was at, they’re going to do the radiation. I didn’t understand it. I really needed help in my house, I was so sick, I own a bed, it’s a pull-out bed out of my couch. So I went to a bag, a bean bag to be able to lay on each and every day I was just under that much pain, and it was miserable to me, and I kept on working on it. I didn’t want my hair to be falling out. I didn’t want my body to be deformed all that was on my mind, and I decided to go and do this radiation. And now I can tell anybody I know it’s scary, I have experienced it, but it’s really after you get done with it, you’ll be so happy that it makes you feel like you were one time before, you’re back to your normal, you’re you. 

My reason to take the clinical trial, because I had fear in me about prostate cancer, and I did not know where and what it would be like of carrying this. So I had in my mind that I wasn’t going to do it. I couldn’t sleep at night. You know one…and how is it going to, how is this cancer going to hit me? I’m laying in the bed, “What’s it going to do? What should I do? How should I sleep to keep from worrying about me and this cancer?” I’m running back and forth to the bathroom, couldn’t eat and appetite gone and I got to the point, I’m going and take this test. So I called the navigator and he and I discussed this, and he convinced me.  

A clinical trial to me is the work of getting you with your prostate taken care of. I experienced a lot of goodness after I realized what this was really about.  The clinical trial, it really made me happy to be a part of it because I just didn’t believe that after learning about that word cancer, I’d feel good. I’d feel like I ain’t got the cancer, and that’s what that clinical experience showed me, and made me feel like. So, I’m happy with it. 

My advice to men, especially Black men, I advise them to check themself, your whole body, you need your health taken care of, if you want to be able to be out here and live with this prostate cancer. One thing I do know about Black men, they are afraid when it comes to taking care of themself as though they can look in the mirror and see all about themself and tell you whether there’s something wrong or not, but you can’t do that. I advise all men, not just only Black to take time out, talk to your provider. A lot of us got it, and we don’t even know we are carrying this around with us, but you like to go out and have fun, smoke your cigarettes, drink and do all your partying, but you’re still carrying that death weight on you. We don’t need that cancer, prostate. And I would advise all men, take time out and check yourself out, because it’s a good thing in life to do as being…want to be here on earth amongst other good men. And I would like to say, please do this, I’m a living witness. 

Look at me. I feel just the way I look and I’m serious to tell you to take that time out for yourself. 

What Prostate Cancer Populations Will Benefit Most From Telemedicine?

What Prostate Cancer Population Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo

With a lack of staging in prostate cancer, which patients can benefit the most from telemedicine visits? Dr. Leanne Burnham maps out factors that may make some patients lower risk and situations that may warrant other patients to be seen in person to receive optimal prostate cancer care.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

 

Transcript:

Dr. Leanne Burnham

So, prostate cancer is a very diverse disease. It presents itself differently in the clinic in each individual patient, so who is considered low risk, who is considered high risk is really a personal conversation that you have with your physician one-on-one, and it’s based on a lot of different factors. It’s not as cut and dry as some other cancers where you may break the disease down by just stage, simply stage I, stage II, stage III, stage IV. There’s a lot that goes into determining how aggressive someone’s prostate cancer tumors are. That being said, if you are considered to be low risk, you may be undergoing active surveillance by your physician or watchful waiting and in that situation, telemedicine would probably be a perfect approach where you get your labs done every few months or whatever your physician decides. And they can track your PSA velocity or doubling time and seeing if your PSA is growing, by growing I mean increasing in circulation or if it’s not which would be ideal. If you are more high risk, then you may need to increase your telemedicine visits. And, of course, if you are taking therapies that cannot be done from home, then you would need to go to a clinical setting, so that would include radiation of course, and chemotherapy, immunotherapy, perhaps. If you’re enrolled in a clinical trial where you need to go on-site to receive the medication, then that’s something that cannot just be done by telemedicine, you would have to go in-person.