How my fatigue has me feeling this week:
Three more sessions. Just three more sessions…
Tag: salvage radiation therapy
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.
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 #21 – Week Update
This morning’s Zapping Session #21 was canceled because of equipment issues—a make-up session will be added at the end—but the rest of this week’s zapping sessions were quite routine across the board, with a minor issue on Monday.
In addition to having to have a full bladder, you also have to have an empty rectum. Despite having had a bowel movement just prior to the session, the CT scan revealed a little stool left behind. That concerned the technicians, so they called the radiation oncologist over to see if they could proceed with the zapping. He gave the green light after evaluating the size and positioning and we completed the session as usual. That was a first. Glad to see that the imaging safeguard in place is working.
I had a different set of technicians zapping me this week and the one seemed to be a bit more persnickety about my bladder status, which I appreciate. She gave me some updated guidance on how to make sure my bladder was full. In essence, she said to make sure to drink water throughout the day so that my body is hydrated (especially in our warmer weather). Otherwise, if I’m not hydrated, when I drink the liter of water in the morning, it gets diverted to where it’s needed in the body first rather than to the bladder. Makes sense.
Based on that, I’ve actually started drinking water after each time I empty my bladder—even in the middle of the night—and that seems to have helped keep me closer to a full bladder (after only one day of using this method).
Yesterday’s session was the fastest yet: 23 minutes from leaving my house to being back in my house. The patient who’s normally ahead of me on the schedule was done, and not more than a few minutes after I checked in, I was on the table getting scanned for positioning.
That really makes me appreciate the fact that I am able to use this facility and not the other one offered up. The other facility is 18 miles / 29 km from home and, depending on the the time of day and traffic, it could take 35 to 60 minutes to get to, plus there could be delays at the entrance gate to the military base the hospital is located on. Managing bladder timing under those circumstances would have been a nightmare.
On a positive note, my fatigue has been noticeably less this week than last, and that’s a good thing. That just means that I have more energy to run to the toilet more frequently. 😂 The frequency is a bit annoying and even limiting.
I find that it’s a little challenging to go out and play immediately after the zapping session unless I could guarantee that a toilet is available on relatively short notice. After surging my system with water in the morning, I find that I’m emptying my bladder three or four times in the first two hours or so after the session ends. Once that water is purged from my system, I get back onto a more normal schedule of emptying my bladder every two hours or so, give or take.
Now, it’s off to the barber shop without fear of having to bust out of the chair and run to the toilet. I hope.
Enjoy the weekend and 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!
Day 4,273 – Fatigue Fatigue?
Okay. If this keeps up or gets worse, the fun will definitely be over. <sarcasm font>
Friday’s zapping session went amazingly well. From the time I closed my garage door, drove to the facility, got zapped, drove home, and opened the garage door it was 27 minutes. Total. We’re in the groove.
The kicker came in the afternoon.
My energy level just dropped to near zero and I went into a Rip van Winkle-like sleep for the whole afternoon. Not good. Even after the long nap, I was still pretty lethargic in the evening.
This morning (Saturday) was a different story. I was pretty energetic and worked on organizing my home office up until about noon. But about an hour into it, my energy level hit a brick wall and I was horizontal on the sofa again for a nap that lasted about ninety minutes.
The nap gave me a second wind of energy, but just a few short hours later around 6:30 p.m., I was dragging anchor again. (I’m powering through it right now as I write this so I’m not up all night because I napped this evening.)
I’m sure it’s a combination of the hormone therapy (started twelve weeks ago), the radiation, and the fact that I’m running to the toilet two to four times a night that’s causing all this. I’ve even started going to bed about two hours earlier than normal to try and make up for the sleep deficit through the night.
So, yes, I’m fatigued by the fatigue. I won’t say it’s incapacitating because I have pushed myself through a few low-energy sessions, but it is having an impact on my routine. I can only imagine what it will be like in three to five weeks if it keeps up like this. Sheesh! But, on the positive side: No hot flashes!
Monday’s session will be the one-third mark for the treatment. I guess that’s something to celebrate.
Be well!
Zapping Session #9 – Quasi-Fail
At the start of this adventure, I set a goal to not have my bladder interfere with a session. I failed that this morning.
I pretty much followed my normal drinking schedule to fill my bladder for the session, but I could tell driving into the parking lot that this was going to be a close call. They called me back to the zapping room pretty much on time, but there was another prostate patient wrapping up his session, so I had to wait another ten minutes. As I waited, I could feel the pressure in my bladder getting even worse.
When he wrapped up his session, they called me back to the table and I told them we were in the “danger zone,” so they put an absorbent pad on the table just in case. As I sat on the table, I realized that I wasn’t going to make it and made a mad dash to the toilet, getting there just in the nick of time. And, because once I start emptying my bladder, I can’t stop in mid-stream and only partially empty it. It’s all or nothing. My bladder was empty.😡
The technicians had me stay in the area, drink some more water, and wait while they mapped the next patient. About twenty minutes later, I was back on the table, absorbent pad still beneath me, and we zapped away. By the time we were done, I was making a second mad dash to the toilet because my bladder was filled to capacity again.
In the end, the session was completed successfully.
Watch “Biochemical Recurrence Post-radical Prostatectomy” on YouTube
I stumbled across this presentation in my YouTube feed and even though it’s about 10 years old, it contains a lot of good information for those with an increasing PSA after radical prostatectomy.
It gets into:
- Biochemical Recurrence definition
- Value of regular vs. ultra PSA tests
- Survival
- Imaging (again, dated because this is 10 years old)
- Identifying good candidates for salvage therapy
- Salvage RT toxicities and success rates
The video is about 52 minutes long, and the presenter shares information in an understandable way for us patients.
Zapping Session #7 – Canceled
This was interesting… About half an hour before my scheduled zapping time, I received a call saying that their Death Ray machine (my term, not theirs) was down and they needed to cancel today’s session. “We’ll just add it on at the end. See you Monday at your normal time.” Alrighty then…
That will take me to 31 August to wrap it all up, assuming there aren’t further hiccups.
Dan's Journey through Prostate Cancer 