Day 4,332 – Urologist Visit

Today’s visit with the urologist went about as expected—just a routine review of the salvage radiation therapy, its after-effects, and what’s next.

He was pleased with the drop in my PSA and thought that it may drop even further given how soon after the test was taken after the completion of the radiation. He stressed that we’ll have to establish a nadir in the next year to get a true starting point to determine the effectiveness of the radiation. He was okay with doing another PSA test in November in advance of my radiation oncologist follow-up visit.

Regarding my urinary frequency and urgency, he said I was pretty much where I should be after the radiation, and that it could take up to six months for things to truly calm down. I mentioned that the radiation oncologist put me on tamsulosin / Flowmax, and that it seemed to help a little with my frequency issues.

But I also told him that I stopped taking the tamsulosin over the weekend because my incontinence was up while I was on it and I just wanted to see what it’s like without it. So far, so good.

I did talk about my back and rib pain and once again asked if it could be related to the Eligard. Once again, he thought it was highly unlikely. He also ruled out the possibility that it could be metastases given where my PSA level is at. He did do a bit of a hands-on physical exam to rule out kidney stones (been there, done that, this is not kidney stones). He also made the comment, “Hey, I do plumbing”—I cracked up—and he was glad that I’ll be speaking with my primary care physician about it next week.

He didn’t want to put me on any additional medications for the urinary issues because of side effects that they may have, and we never explicitly spoke about whether to continue the hormone therapy or not. We did, though, talk about this first six-month dose wearing off in the next few months, so it wasn’t as though the topic was completely ignored.

Going forward, I’ll get another PSA test sometime in November; have my follow-up with the radiation oncologist shortly after (yet to be scheduled); and follow-up with urology on 13 December 2022. (I did avoid a 3:30 p.m. appointment like today because traffic sucked driving home.)

Be well.

Header Image: Cathedral Rock and Oak Creek near Sedona, Arizona

    Day 4,315 – A Week After SRT Ended

    If you recall my last update, I was all abuzz with energy on my first day after salvage radiation therapy ended. Well, that didn’t last long.

    Sunday and Monday I was pretty much knocked out with fatigue, and Tuesday wasn’t much better. The rest of the week saw slight improvements with each passing day, but you would have still found me taking a cat nap here or there.

    The urinary frequency is still there, meaning I’m still running to the toilet four to six times a night which is annoying. But there has been another change, and I’m not sure if it’s a result of the radiation, the Flomax (Tamsulosin), or a combination of both.

    Post-surgery, pre-radiation, I would get the urge to empty my bladder and I’d have time to make it to the toilet and then consciously start the flow to empty my bladder. Since the radiation, the time between my brain receiving the urge to empty my bladder and the time I need to be at the toilet is much shorter. It also seems that my ability to control the start of the flow is lessened to a degree, meaning it starts flowing on its own. That’s led to one minor accident where I was just a few seconds shy of getting to the toilet.

    I’m not overly concerned about this at the moment, as it’s still early after the radiation ended. Plus, it may be the Flomax that’s contributing to this as well, and the radiation oncologist said it would be acceptable to stop taking it around the end of September if I felt it wasn’t helping me with the urinary frequency. However, if it continues beyond that, I may have to get one of those “Where’s the toilet?” apps for my phone. 🙂

    This morning, I was surprised by blood on the toilet paper after my morning constitutional. I’m pretty sure it’s from irritated hemorrhoids rather than from something deeper inside. It’s something to keep an eye on going forward.


    You may recall that, back in June about five weeks after I received my Eligard injection, I was noticing a dull musculoskeletal ache in the middle of my back. Through the summer, that stayed pretty consistent—just a minor ache in the background not causing any issues. It was tolerable and I didn’t think much of it. In the last few weeks, that’s changed.

    The ache is more intense and a bit more widespread across my back than when it first appeared. Plus, I can have brief shots of acute pain if I move suddenly or twist my body in a weird way (like after unexpectedly bumping into something). It’s more like a muscle spasm response than anything else. But it can and does impact how the way I walk (a little more gingerly) and how I stand up.

    Of course, hormone therapy is known to contribute to musculoskeletal issues, and one of the listed side effects of Flomax is “body aches.” Perhaps they’re additive.

    Of course, my mind also has to go down the path of possible distant metastases to the spine or ribs even though it’s extraordinarily unlikely given where my PSA was at going into SRT (0.36 ng/ml). Still, it’s a conversation that I’m going to have with my urologist in my meeting on 20 September.

    Stay tuned for more to come.

    Be well!

    Image: Salton Sea, California

    Zapping is Done!

    The final zapping session is history. Hallelujah!

    It’s important to me to recognize the staff of the UCSD Health Radiation Oncology – Chula Vista clinic. They turned what was initially a scary experience (for me) into something that was much more pleasant and positive. They radiation therapists were great coaches, provided compassionate care, and endured my stupid puns and jokes. The nurses were equally compassionate, thoroughly answered all of my questions, and helped assuage my fears in the process. To all of them: Thank you!

    I went out for a celebratory brunch with my friend who was there for the first session and listened to me whine throughout the process.

    Now it’s time to let my body recover from seven weeks of being stuck in a giant microwave oven. Hopefully, it recovers quickly and I get back to a more normal routine. Of course, we may not know for another year whether it was truly effective. Fingers crossed.

    The effects from the hormone therapy will cloud the results of the radiation for quite a while. The six month dose will last into October (and beyond) and, if my PSA has, in fact, dropped, we won’t know whether it’s the ADT or the radiation (or both) that caused it. Realistically, we probably won’t know whether the radiation was successful until late next spring or even summer.

    Enjoy your weekend! I know I will.

    Zapping: The Final Week

    Last weekend, I ran out to Cabrillo National Monument where I used to volunteer, just to hang out and chat with some of the volunteers there. It was a great visit and I felt quite energized while I was there. But then I discovered something.

    There definitely is benefit in forcing yourself to get out and enjoy a lunch with a friend, a walk along the beach, or just a drive through the country. It is energizing while I’m doing it. But what I’ve noticed is that the fatigue kicks in much harder and much faster than if I’m just hanging out at home.

    I could tell near the end of my conversation with my fellow volunteer that the fatigue was coming on fast, and that it was time to go home. When I got home, I was out for the count for a couple of hours after. Not fun.

    Monday’s zapping session was dicey. I started drinking my liter of water at 8:30 a.m. and finished it at 9:05 a.m., well in advance of my 9:45 a.m. appointment. As I was leaving the house at 9:30 a.m., I felt pretty good about my bladder fullness, but once I got to the clinic, that feeling of fullness subsided substantially. I told the technician that I though I was borderline and we agreed to take another patient ahead of me. “It will take about ten minutes.” Famous last words.

    Long story, short, it was nearly half an hour later when they put me on the table, and by this point I was ready to burst. They even put an absorbent pad on the table and a plastic urinal bottle on the counter “just in case.” Fortunately, neither were needed, the session was completed successfully, and there was no accident.

    Word of advice to those managing their bladder fullness timing: Allow a cushion for delays.

    When I got home, I was totally spent and spent the entire day in various stages of rest. Ditto for Tuesday. (Hence my Wile E. Coyote post!) Wednesday went as planned, although I was at about 60%-70% bladder fullness.

    Thursday’s session went a bit awry. It actually started around 2 a.m. Thursday when I made one of my five runs to the toilet. After crawling back into bed, I just could not fall asleep again. Too many things running through my pea-sized brain kept me awake. I finally dozed off around 4:30 a.m. Ugh.

    When I got up, I wanted to avoid a repeat of Wednesday, so I started drinking water as soon as I got out of bed around 7 a.m., and I started drinking my liter of water a full thirty minutes earlier than I normally start. When I got to the facility, I could tell I wasn’t ready, so we skipped me and brought another patient in. Fortunately, that was only about a fifteen minute delay which filled my bladder nicely.

    I met with the radiation oncologist after the session Thursday, and we talked about the fatigue and urinary frequency. He said that the fatigue will likely last for about two more weeks after the end of the treatment and then I should see a noticeable improvement. He recommended that I stay on the Flowmax through the end of September to help with the frequency. We’ll schedule a follow-up session for three months from the end of treatment, so I’m guessing late November or early December.

    Barring any technical issues, tomorrow morning’s session will be my last. Woo-hoo! I’ll post about that separately.

    Be well!

    Zapping Session #30 – Week Update

    Week six of seven is done! Woo-hoo! I am soooo ready for this to be over.

    Last weekend, I got out of the house for a bit just for a change of scenery, but those excursions were short-lived because the fatigue was kicking in. I stopped by Silver Strand State Beach to just hang out by the ocean and let the sound of the surf be a calming influence. But after only twenty minutes, a wave of fatigue came over me and I could barely keep my eyes open, so I went home. It’s funny how it can come on so suddenly.

    Monday’s session went well, and Tuesday I could tell that my bladder wasn’t quite where it needed to be, so we let another patient go ahead of me. At the end of the session, the technician commented it was worth the wait because my bladder was “perfect.”

    One thing that popped up for the first time on Tuesday morning was that I noticed a small amount of blood on the toilet paper after my bowel movement. Needless to say, that concerned me considerably. I had a second bowel movement and there was no blood evident then.

    I spoke with the nurse after my zapping session and she said that it’s not out of the ordinary this to happen for being at this point in the treatment. I mentioned that I have had a history of hemorrhoids that would bleed on occasion, and she said the radiation could irritate them, too. She encouraged me to make sure that my stool was soft, either through diet or stool-softeners. There hasn’t been a repeat occurrence since.

    Wednesday’s session was weird. I went in feeling as though my bladder was full and after the treatment, the technician said it was barely into the treatable category and encouraged me to start drinking earlier. That frustrated me because I’ve been hydrating before going to bed, drinking a bit each time I go to the toilet (six times the night before!—so much for the Flomax working), and even starting to drink when I first wake up. Grrr.

    Thursday’s session went well, cutting it almost a tad too close with bladder. Afterwards, I met with the radiation oncologist (RO) who just flew in from his vacation in Bavaria the night before.

    We talked about my fatigue and how the Flomax doesn’t seem to be doing much of anything positive for me yet (it can take a week to kick in). We’ll keep an eye on things this week and beyond, although he said that the urinary issues could continue for a month or so after treatment ends.

    It was interesting that, without prompting, he mentioned that it’s really the last few sessions that really do the most damage to the cancer cells and it’s not wise to stop early. I’m guessing that there are those who are tired of the side effects, as I am, who ask to cut the treatment short. Not me. I’ve come this far, I’ll finish it off.

    We also talked about the follow-up plan once treatment is ended. In a nutshell, he’ll see me again in three months, near the end of November and review my PSA and if there are any lingering side effects. He agreed that these first few PSA tests will reflect the effects of the androgen deprivation therapy far more so than they will the results of the salvage radiation. He said it will be a year or more before we really know if the radiation was successful. Not a surprise to me, but nice to have it confirmed.

    Even though I’ve started drinking my water earlier than I have been, I could tell that my bladder wasn’t ready for this morning’s session, so we let another patient go ahead of me while my bladder filled. No biggie. If I had another five minutes on the table, I would have fallen asleep. (Thanks, fatigue!)

    Time for a nap. 😴💤

    Common Steroid Could Improve Prostate Cancer Radiotherapy Outcomes

    A link to this article showed up in one of my prostate cancer newsletters that I receive. There’s a link to the original study report in the article, and it’s way over this layman’s head to make heads or tails of it in a brief read-through before my zapping session.

    I didn’t dig deep enough to see if this applies equally to primary radiation therapy and salvage radiation therapy (because it’s not yet approved for use and too late for me).


    A new study suggests that unwanted side effects of radiation treatments for prostate cancer could be reduced by the common steroid betamethasone.

    Source: Common Steroid Could Improve Prostate Cancer Radiotherapy Outcomes

    Zapping Session #25 – Update

    This week’s sessions went well for the most part.

    Tuesday, though, was a close call. As I was getting ready to leave the house, my brain was telling me to empty my bladder—soon. I debated whether to follow my brain knowing that I’d likely delay the zapping session because of emptying my bladder ten minutes before or just head off to the appointment hoping that I could hold it.

    Death Ray Machine

    Luckily, the technician came out within a minute of me scanning my barcoded check-in card and asked if I was ready. I told him, in a somewhat panicky voice, that I was more than ready and we had only a few minutes to get this done before the dam burst. We made it happen, and I was trotting out of the room to the nearest toilet, making it there by a matter of seconds before having to let it all out. Too close for comfort.

    Thursday’s session wasn’t as fast, but had me on the brink and pretty much sprinting out of the treatment room to the toilet. Again, too close for comfort.

    This morning’s session (Friday), the pendulum swung in the complete opposite direction. Despite following my normal fill-the-bladder routine, I could tell that I was nowhere near ready to get zapped. They skipped over me and took not one but two patients for their sessions as I waited for my bladder to fill. After the second patient, I hopped on the table, still a little uncertain about my bladder fullness, but the scan showed it was filled sufficiently to go ahead with the treatment (about 70%).


    I met with the radiation oncologist on Monday and we talked about the fatigue and urinary frequency. Once again, he offered Flomax and I declined. However, Monday night and into the entire day Tuesday, I was emptying my bladder every sixty to ninety minutes, day and night. That gets old, fast. After my session on Wednesday, I spoke with the nurse, gave in, and requested the Flomax prescription.

    The Flomax seemed to help that very first night, getting me down to two trips to the toilet. Last night was about as good with only three trips.

    But, as I mentioned a few posts ago, I didn’t have a positive experience with Flomax the first time I tried it years ago, and it seems to be kicking me in the butt again by adding more side effects on top of the ones I’m already experiencing from the Eligard and radiation.

    Of the listed Flomax side effects, I seem to be experiencing drowsiness, headache, body aches, and faster heart rate. Yippee.

    Yesterday, my first full day on Flomax, I was exhausted the entire day (as if the fatigue from the radiation wasn’t bad enough…). I also had a low-grade headache throughout the day and just felt blah. The one that concerned me the most was the heart rate.

    I monitor my blood pressure and pulse each morning and, since March, my resting pulse has been averaging 66 beats per minute. This morning, it was 88 bpm; yesterday, it was 74 bpm. That sudden uptick concerned me, so I spoke with the nurse about it this morning and she reassured me that it wasn’t a real problem, but something to keep an eye on if it keeps increasing.

    I’ll continue with the Flomax for now because they say it can take five or so days for it to really settle into your system. But if these issues continue or intensify, we’ll have a discussion about continuing on Flomax.


    On a more positive note, I did manage to join a friend for lunch on Wednesday and that went fine, with preventative runs to the toilet just before entering the restaurant and just before driving home. By the end of the lunch, though, I was fading fast and was ready for a little siesta at home.

    At this point—compared to how I was doing last winter when my only concern was a rising PSA—I can tell that I’m on the “treatment is worse than the disease” roller coaster. I know that many of these side effects are supposed to subside within a few months after treatment ends, and I’m looking forward to that happening. In the meantime, ten more sessions / two weeks to go!

    On that note, I’ll wish you a happy weekend! Be well.

    Zapping Session #16 – Update

    This morning’s session had an unexpected surprise. At the end of the session, the technician told me that my bladder was “borderline” not filled enough, and I found that to be really odd. I used the same bladder-filling timeline and technique this morning that I’ve been using all along. She encouraged me to practice over the weekend.


    I met with the radiation oncologist on Tuesday, which was unusual because our normally scheduled meeting day is Thursdays. He told me he was going away for a few weeks, and I asked him where he was going. Long story short, his wife is from Germany and they were going to visit her family in a town that was about an hour from where my grandfather was born. Also, his wife studied at Würzburg, and my cousin is a professor and doctor at the university hospital in Würzburg. Small world.

    During the meeting, I mentioned that the side effects were beginning to kick in more, and he commented, “Yeah. You’re at the dosage level where they typically start showing up.” I thought that was interesting because I never considered there to be a dosage threshold for side effects. It makes perfect sense though.

    Fatigue

    The fatigue is really kicking in now, although it happens in waves of varying amplitudes. For example, after yesterday’s session (Thursday), I was energetic enough to stop by an event at my former employer and just hang out for a few hours and see how everyone was doing. By mid afternoon, I was a tad tired (70% on my internal “battery”) but was able to keep going through the afternoon, past dinner, and into the evening.

    Today, though, was a considerably different story. As soon as I was done with the session at 10:15 a.m., I ran and bought groceries, had lunch, and by 11:45 a.m. my internal “battery” was down to about 20% and I was napping until about 2:30 p.m. Hard. Even now, as it’s approaching 4 p.m. as I’m writing this, I feel as though my battery is about 50-60% charged even after the nap.

    I may attribute part of the fatigue to my urinary frequency, because it’s definitely increased through the week.

    Wednesday night into Thursday morning, I had to empty my bladder just twice. Last night, I had to empty it four times. That’s four sleep interruptions that would contribute to the fatigue.

    The doctor did offer to put me on Flomax (Tamsulosin) to relax my bladder and hopefully reduce the frequency. For now, I declined his offer because at some point years ago (perhaps even before I was diagnosed), I had been prescribed Flomax and I recall that it wasn’t a very positive experience with its side effects (extreme dizziness).

    Urinary Frequency

    As you saw in a previous post, I was using a spreadsheet to track when I was emptying my bladder, but that was cumbersome to use, especially logging an entry in the middle of the night. I found an app called “Simple Time Tracker” that has a widget that I can have on my phone’s home screen, and all I have to do is tap it to start recording when I go to the toilet and tap it again when I’m done. It automatically records the date and time, and that’s all that I’m after. (The only downside is that I can’t export the data to my spreadsheet.)

    Between 1 a.m. and 4 p.m. today, I’ve made eleven trips to the toilet, and my only fluid intake was about 1.5 liters of water before the zapping session and another 0.5 liters of soda after the session. It’s not like I’m consuming a high volume of liquids to have me going so often.

    Irritation

    My skin irritation remains about the same and applying moisturizing lotion does help. But now I have a general constant mild burning sensation in my urethra and hints of it starting in my rectum. It doesn’t hurt to urinate (yet), but the burning sensation is mildly annoying right now. I also think the irritation in my urethra is triggering my brain to empty my bladder when I really could probably wait a while longer without incident. I’m guessing it will likely worsen as the cumulative dosage increases.

    Emotions

    For one of the first times since starting the hormone therapy, I found myself to be a bit on the emotional side this week. I’m guessing the fatigue contributed to that, too. I’ll leave it at that for now, and I may write about it separately in the days ahead.

    Summary

    After Monday’s session (1 August) I’ll be halfway through the treatments. If the side effects stay at the current level, that can be manageable. If they get worse, I guess I’ll just have to suck it up and power through them like the countless thousands of radiation patients before me.

    Enjoy your weekend!