Conversations With Prostate Cancer Experts

Patients Speak: Getting Chemotherapy

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Bill R. found out he had prostate cancer about a year and a half ago. He’s been on Taxotere (docetaxel) and has just started Jevtana (cabazitaxel).

He spoke with Prostatepedia at length about his experiences with chemotherapy for prostate cancer. How did you find out that you had prostate cancer?

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Bill R.: We had just moved from California to Arizona for my retirement when I was diagnosed. I got to the point where I couldn’t pee, so I ended up at the urologist. After a bunch of tests, the urologist said, “You’ve got an enlarged prostate. You can either run around with a bag of pee tied to your leg for the rest ofyour life, or we can do a transurethral resection of the prostate (TURP) to cut part of it out.” They did the TURP, and they biopsied it.

That’s when they called me with the bad news. I had Stage IV prostate cancer that had metastasized. It was well along. It’s not been a year and a half.

What was your reaction?

Bill R: It was a surprise, certainly not expected. It takes a while to internalize it, and the first question you ask is: how long have I got? That’s like asking how to push a piece of string uphill. Nobody really knows the answer. They said that it’s very aggressive and, without treatment, probably two years or less.

What kinds of treatment did you have?

Bill R: Everything happened almost immediately because they said it was aggressive, and I couldn’t screw around. I was on androgen deprivation therapy (ADT): Lupron (leuprolide), which suppresses the testosterone, and Xgeva (denosumab). At the same time, I started chemo because the protocols at that time said the two of these together seemed to extend life.

Which chemo drug did you go on?

Bill R: Taxotere (docetaxel).

What was that like?

Bill R: Initially, I was in pretty good shape, and once I got diagnosed, I worked out even harder. I was swimming half a mile per day and more. I figured I had the strength in my body to get through this. Through the first three or four treatments of chemo, I had some of the usual effects, like constipation, occasional nausea, and stuff like that. I took a probiotic during treatment. That seemed to help. Other than that, I really didn’t have much of a problem, although, each chemo session beats you further down into the dirt. It’s once every three weeks, so you get weaker as you go through it.

Right, of course.

Bill R: They were going to do six chemo sessions, but my PSA just would not come down. They had expected it to drop close to zero, and we got down in the 20s, but that’s about where it ended up. They wanted to do two more chemo sessions, and I agreed to that. At that time, I had six chemo sessions, and the last two were pretty hard. It really did wipe me out in terms of energy and everything else. I didn’t have a lot of reaction to it, though.

I had a moustache that got so thin, I just shaved it off. The hair on my head thinned, but I didn’t lose all of it. It got very sparse, and I had little bald spots, but it was short and fuzzy. It all grew back differently. I now have a bunch of cowlicks, where before, I had nice straight hair. Chemo usually causes the fingernails to look awful for a while, and I lost my two big toenails, but they have now grown back, more or less.

The chemo started in September 2016 and ended February 2017. After the last chemo session, my PSA was still up at around 23 or 24. They worked on getting me approved for Provenge (sipuleucel-T), which is an early immune therapy. They extract your white blood cells and send them to a lab, where they do something, and then put them back in. I did that in the summer of 2017.

Over the next several months, my PSA came down. It got to a low of about 11, but that’s as low as it ever got. There were times when the chemo was bad. In the beginning, I didn’t realize how much you had to stay hydrated.

I didn’t know that.

Bill R: Yes. They offered for me to come in a day later, and they pump you full of a liter of saline.

Were you able to keep going about your daily activities or were you incapacitated?

Bill R: It slowed me down. First of all, you don’t know what you don’t know, so you’re not really prepared for this.

Chemo causes constipation, and if you’re prepared for that, it’s not a problem; you take laxatives ahead of time. But if you don’t know that, it’s a pretty miserable couple of days. From that standpoint, it slowed me down, but it didn’t stop me from going about our daily routine.

For the first month or two, I continued to swim, though not as much as I had been. I assumed that if I stayed active it would help me through the chemo. I was never incapacitated in that sense. There were a few days where either I didn’t feel well or was really tired, so I didn’t go out and pound the pavement or anything. In retrospect, it was hard to tell in the first month or so whether the chemo or the Lupron (leuprolide) was causing more issues.

Because you were taking them simultaneously?

Bill R: Yes. You’re doing everything at the same time. I guess, in retrospect, I slowed down and had a few days of down time. But it didn’t stop me from doing what I wanted to do.

I went out and bought a custom chopper motorcycle, and after my Provenge (sipuleucel-T) treatment in the summer, I took a 3,500-mile ride up to Sturgis, out through Yellowstone, and home. Two weeks later, we spent a month in Europe. It was hard for me, but maybe it wasn’t as hard on me as it might have been on others, simply because I was in pretty good shape when I started. If you’re not in good shape, it could be tougher. They give you some steroids to help you through this, and in the beginning, it took a while to get the steroids adjusted. They gave me too much, and I got mouth sores for a while. Once the steroids got adjusted, that was fine. The worst part of the whole thing was after it was over. Inside of a week, I started to retain water. I put on 20 pounds, and it was all water. I’m not a big guy at about 150 pounds and 5’8”, but I looked like the Pillsbury Doughboy. Living in Arizona, you run around in shorts all the time, and even the cargo shorts that I wore were so tight that they’d leave marks on my legs.

Were you able to start exercising again after everything was done?

Bill R: Yes. I started swimming again and working out. When I did the Provenge (sipuleucel-T) in the summer, that wasn’t so bad, I guess. It’s something that most people don’t want to go through—let me put it that way. There were days I was extremely tired and didn’t feel well. I was able to get back on my feet, exercise, and lead a normal life.

Doing that again, with what I know now, it probably would have been less of an impact on me. That’s the challenge for a lot of people. You go into this, and you don’t know what you don’t know. The doctors don’t really know how you’re going to react to some of this either.

Right, because everybody is different.

Bill R: Exactly. They had to adjust things like the steroids, and then things were better. They expected my water retention. I had some neuropathy damage in my feet, which is permanent. When I walk around, I feel like I’m walking on water bubbles all the time, so I’m not really stable. That took a while to get used to. Staying active will make you feel better, even if it’s just going out for a walk every day, so you’re not sitting there thinking, “I’m going to die, and this is awful.”

Right. It’s not good for anyone to dwell on that.

Bill R: Right. As soon as you head down that path, you’re toast. You’ve got to find a way to live your life. It forces you to get all your affairs in order because you realize that you’re going to pass away before you expect to. I’m starting Jevtana (cabazitaxel) in a few months because the cancer has progressed.

I’ve heard people can tolerate Jevtana (cabazitaxel) a little better. The side effects are not as severe as Taxotere (docetaxel).

Bill R: That’s what they’re telling me, that I shouldn’t expect things like water retention and so on. I am going through that now, so the doses are once every three weeks for six rounds. We’ll see how that goes. But it is what it is. I tell everybody if you live long enough, you’re going to get prostate cancer.

That’s actually true.

Bill R: It’s only a question of when. If you get it like I did, earlier in life, it shortens your life. But if you get it when you’re 90, nobody knows and nobody cares. Hopefully I’ve helped people a little bit.

A lot of it is mental. If you swear that this is going to be miserable, everything you look at will contribute to that feeling. Whereas, if you’re determined to get through it with a positive attitude, it’s not as bad. There’s a lot in the mental side that really helps you get through it.

Join us to read the rest of our August conversations about chemotherapy.

Author: Prostatepedia

Conversations about prostate cancer.

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