Patients share their experiences managing the side effects of prostate cancer treatment, including hormone therapy, radiation, and medications used to treat advanced disease. They discuss challenges such as hot flashes, changes in sexual health, bone complications, and recovery, while emphasizing the importance of understanding side effects and working with their care teams to manage them.
Brad Goverman:
As of today, I'm about close to a year since my radiation therapy, and my PSA levels are close to zero. I have basically fully recovered. One thing I didn't know when I was doing the research on radiation therapy is that it's common for radiation therapy to do it jointly with a hormonal treatment, hormonal therapy. That was something that in hindsight, looking back that I would've probably wished I had a better understanding of, why the hormone therapy is needed jointly with the radiation therapy.
But my point of bringing this up is that, so it took me about, from October to February, maybe about four or five months before my testosterone levels came back to normal. And that basically helped return my libido to more of a normal kind of interest in sex again and so forth. So that was something that I wish I knew a little bit more about, kind of understanding how the hormonal therapy worked jointly with the radiation therapy, and what some of those side effects were that went along with it.
Thing that I did learn and I'd like to share with other men that may be going down a similar journey is that understanding more of the side effects of both of the options. Even though I had done a lot of research and there was a lot of information out on the web and from your doctors and professionals that gave you all this advice, it's a little overwhelming to take it all in.
So you might even think about charting it out and making sure you really understand it. One of the things that I didn't realize was going to be as challenging was, the hormones were interesting side effects to me. And knowing now what hot flashes are, I have certainly have a lot more sympathy for pregnant women and women that are going through menopause of learning what that is like.
And the other thing I learned about the hormonal therapies was the impact and radiation that it's going to have on my sex life. I'm a normal red-blooded male, and there was definitely a decrease in interest in libido as a result of the therapies. And while it did take four to six months, it has returned to somewhat of a normal state. But those are factors that might not have sunk in as much, and had as a big an impact when I was going through the process. So those are a couple of items that I wish to share with people that are going to go down the radiation kind of joint hormonal therapy path. The hot flashes were interesting, and the impact that it has on your sex life, although that it is temporary.
Mike Hoppel:
At night I have hot flashes that go on, and I can set my clock by it, I'll tell you what time it is by when I have my last hot flash.
Interviewer:
And why is that? It's from the shot.
Mike Hoppel:
And that's from the shot, but every hour and a half I light up like a Christmas tree. I'm just sweating from head to toe, everything. And it maybe lasts five to 10 minutes, but I can't sleep. It takes 10 hours to get three hours of sleep. I'm sort of getting used to that, I don't want another drug involved in this so I'm going to put up with it. And as long as they keep the flexible hours at work on me, I get home at four o'clock. It takes me two hours to get ready. At seven o'clock I'm in bed, and by eight o'clock the TV is going off. And then I'm just sitting there twiddling my thumbs waiting for the next hot flash, so I can try to go to sleep and clean it. And then I'm up when it goes off.
Craig Deatherage:
They started me on Zytiga initially as the oral pill that I would take. And then because Zytiga requires that you also take prednisone, just a little 5 milligram prednisone every day. But when we started talking about immunotherapy, I had to switch to Xtandi rather than Zytiga because I could not be on prednisone while I went through the Provenge therapy, the immunotherapy.
I had a full round of Radium 223, which I can't remember the commercial name for that, but I had a six-week course of Radium 223 where alpha particles attach themselves to the lesions on your skeletal structure. Because there were a lot of lesions from my skull down through my chest, and my scapula to my rib cage down into my hips, and certainly down through my spine. They kind of stopped there. They didn't go down into my legs, but lot of lesions.
And so that bone therapy, the Xgeva was a necessary monthly shot. I also take calcium on a daily basis to address bone health. But I've had to stop Xgeva just recently. I'm one of the 1% or less who wound up with osteonecrosis, which is dead bone. And in my case, I have dead bone in my jaw, and I've lost a tooth as a result. So we're waiting for the dead bone to get removed before I can even think about having a bridge or an insert done on that side of my jaw. But I've had a number of skeletal pains and issues that have to be addressed. Tomorrow I'm getting an injection for L3-L4 as a diagnostic injection to determine whether or not we're going to do a surgery to remove some of the back of L3-L4, and loosen up the pressure on my nerve root.
So there are skeletal issues that are associated with this, and there are also the androgen deprivation therapy issues, some of which you can read about them when you pull up any kind of a search on androgen deprivation. But it's going to be things like hot flashes. My doctor initially said, "Craig, you're going to get hot flashes. Do you want some Megestrol? Which is what we give women going through menopause." And I laughed and I said, "No, I can handle that." And I called him a month later and I said, "You know what? Why don't you give me the Megestrol because those hot flashes are significant." And so I thought, "Yeah, I could tough this out, but I could not.
It was much better not to be sweating in public when I was public speaking, and just suddenly break out in a sweat from a hot flash. So I let that experience kind of ride for a little while, and then called my urologist and just asked him, "Please, go ahead and give me a prescription for Megestrol."