I went for my next PSA test this week and I truly didn’t know what to expect going into it. My PSA jumped from 0.05 ng/mL on 1 November 2022 to 0.13 ng/mL on 7 March 2023. I’m concerned but not freaked out.
My best guess is that the androgen deprivation therapy effects are wearing off faster than the salvage radiation effects are kicking in. (At least that’s my hope, but what do I know?)
It’s been ten months since I received the six-month dose of Eligard on 3 May 2022, so it makes sense that it would be less impactful on my PSA over time and that my PSA would creep up again. I’m a bit surprised by how big of a jump it was, though.
Of course, I’ll talk to both the urologist and radiation oncologist about this, but that won’t be until May as things stand right now. (I did email the results to the radiation oncologist, and he replied, “I would not read too much into a single PSA value”).
Our follow-up testing and appointment scheduling between the VA urologist and the UCSD radiation oncologist is getting a bit out of whack, and I need to try to rein that in. It’s difficult to do the four-month follow-ups suggested by the doctor when appointment availability is six to eight months out. (I’ll spare you the details.)
My appointment with the VA is on 30 May, and I don’t have a firm date for the UCSD six month follow-up yet, but that should be in May as well.
In other news, my bowels seem to be calming down, with me returning to bowel movements once or twice a day. The intestinal gas still happens, but that comes and goes, too. Urinary frequency is pretty much back to where it was before the radiation, and I can usually make it through the night now with zero to one trips to the toilet.
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
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.
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.
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.
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.
My appointment was at 9:45 a.m. and I arrived at the facility at 9:30 a.m. and met a friend who was there to provide a distraction and moral support—it was great to have him there.
I checked in and had about a ten minute wait before I was called back to the zapping room. There, the technicians explained what was going to happen and had me lie down on the table. We had a little challenge getting me lined up initially. I’m 6′ 1″ / 185.5 cm tall, and all of my height is from my waist up, so I had to scoot up on the table to get aligned.
They told me to wear gym shorts or sweat pants—something easy to pull down without metal (i.e., zippers) or items in my pocket. They put a sheet over my private parts, had me pull down my shorts to mid-thigh, and lined the lasers up on my new tattoos.
After that, they went into the control room and slid me into the machine. I stayed there for a good five minutes or so as they evaluated the fullness of my bladder (just right) and my positioning. They adjusted the table a few millimeters, all under the radiation oncologists supervision, and he gave them the green light to zap away.
The head of the machine rotates around the table, first in one direction and then in the opposite direction, buzzing as its delivering the radiation. That lasted probably around 5-8 minutes or so. It’s not like being in an MRI or CT scan tube at all. No need to feel claustrophobic.
As soon as they were done, they moved the table back to the start position, I got up, and walked out and hit the nearest toilet to empty my bladder. Easy-peasy. All totaled, including the drive there and back, I was gone about an hour.
The only surprise that I had was the paper copy of my zapping schedule that they handed to me. They have me scheduled for 39 sessions instead of the 35 that I thought we were doing. That has me ending on 30 August 2022. No biggie, I guess.
Lastly, they gave me a little ID card with a barcode on it and I simply scan it to check in for all my future zapping sessions.
I’ll have to admit that, a few days ago, I wasn’t all that emotionally worked up about this, and even this morning I thought I was pretty okay. But I can tell now just from the tension releasing from my body right now, I was far more worked up than I thought I was. The subconscious can do some weird things.
Going forward, I’ll probably not post about this after every session, but only when there are noteworthy things to report (like shorting out a multi-million dollar machine if I pee all over it or if/when the side effects start kicking in).
I’m good to go to start my salvage radiation therapy on Thursday. Yippee. <sarcasm font>
You may recall in my last monthly update, I commented that I was having a dull ache in my testicles and groin. I really wanted to ensure that something weird wasn’t going on. Unfortunately, I experienced my first bit of a run-around with the VA Medical Center. After nearly a month of back-and-forth with the office and schedulers, I was able to see the urologist this afternoon.
In a nutshell, she did a physical exam and determined that there was no hernia. I can proceed with SRT Thursday.
I’ve continued my bladder-filing experiment through the weekend with mixed results. Again, I’m scheduled for zapping at 9:45 a.m. and I’m trying to be able to hold my bladder to at least 10:15 a.m.
Saturday, I had a complete fail—I couldn’t hold anything past 9:30 a.m., 15 minutes before my scheduled start time. Not good. Hopefully, I get this sorted out and what’s in my bladder will be sufficient for the zapping.
Date
Start Drinking
Stop Drinking
Urgency at 9:45 a.m. (1-10)
Need to Empty Bladder
Volume (1-10)
30 June
8:45
9:15
5
10:45
5
1 July
8:35
9:10
7
10:15
7
2 July
8:30
9:05
8
9:30
6
3 July
8:45
9:15
4
10:10
7
4 July
8:40
9:15
4
10:25
5
5 July
8:30
9:15
4
10:40
5
Regarding Eligard / hormone therapy side effects, I’m not complaining. Fatigue remains the prevalent side effect. Luckily, no hot flashes yet and, surprisingly, I can still achieve an erection and orgasm to about the same level as before the Eligard. (A bit more effort is required.)
I’m not sure how much I’ll write about the actual SRT once it gets started. I’ll probably stick to the noteworthy items along the way. Let’s hope it does the trick with minimal damage along the way.
It’s been just over a week since I’ve been injected with my Death to Testosterone juice, a.k.a., Eligard, and things seem to be going okay so far.
The injection site was through being sore within a matter of hours after the injection, so that was a positive thing. (My arm was sore from my second COVID booster for about 48 hours after that injection.)
About the only real side effect from the Eligard that has kicked in is a bit of tiredness or fatigue. It’s as though I’m firing on seven out of eight cylinders right most of the time. Nothing that is debilitating, but it is noticeable. No hot flashes or wild mood swings yet.
I did email the radiation oncologist to let him know that I did, in fact, get the injection, and his response kind of hinted at the fact that it may take a few weeks for the Eligard side effects to really kick in. Time will tell.
As a diversion to all of this, I spent the afternoon watching the my hometown Chicago Cubs take on my adopted hometown San Diego Padres at beautiful Petco Park. I can’t say that I’m a huge baseball fan, so this is a once-every-few-years thing that I do when the Cubbies come to town. One day, I’ll make it to Wrigley Field for the first time ever (blasphemy that I haven’t been, I know).
I’ve got a few other fun things lined up between now and the start of the Zap Fest in late June and hopefully the Eligard side effects don’t kick in and ruin those plans.
A few photos from the game today.
Be well!
You may want to turn down the volume before playing. The pre-game music was a bit loud.
I went for my pre-physical appointment blood work yesterday and was surprised to have the results back today. It used to take the VA two or three days to post them online.
In any case, my PSA climbed once again from 0.33 ng/mL on 11 March to 0.36 ng/mL yesterday, 18 April. PSA doubling time dropped from 14.4 months to 12.7 months, indicating a continued acceleration which makes sense.
I did schedule my mapping with the radiation oncologist and, in my discussions with the urologist about the PSA test, we agreed to reschedule my 10 May appointment into September after the salvage radiation therapy was completed. My schedule now looks like:
21 April – Appointment with PCP for a lube, oil, and filter change.
3 May – Eligard injection.
16 June – Body mapping with radiation oncologist.
13 September – Urology appointment
We didn’t set an actual start date for the zapping, but I suspect it would be a week or two after the mapping and it would last through July and into August.
My emotions in the last week or so have run the gamut.
I can’t seem to get it out of my head that, once I start down this path, my life as I currently know it will be gone. Much of that is probably unfounded and a gross exaggeration, as the rational part of me knows that the chances for long-term, quality of life-impacting side effects are minimal. Yet the emotional side of my pea-sized brain is dwelling on that and I can’t seem to shake it.
Of course, that leads me to anger over this insidious disease and the impact it has on your life. Aside from the aches and pains associated with my vintage, high mileage body, it’s difficult to reconcile that within me there’s the army of cells wanting to kill me even though I’m feeling generally well. The fact that you have to take drastic action to fight off those cells—again—makes the situation even more aggravating.
Part of this, too, stems from the timing. I retired at the end of October, and there are things I want to do and places I want to go. The uncertainty of not knowing how my body will react to the hormone therapy and salvage radiation makes me hesitant to plunk down $10,000+ for a bucket-list trip to New Zealand now that its borders are beginning to slowly open. Maybe by October (New Zealand’s spring), I’ll know whether I can endure a fourteen-hour flight.
I know that, like the countless men before me, I’ll get past this and adapt accordingly whatever the outcome. What choice do we have? In the interim, I’ll continue to play as my body under treatment allows me to play.
Venting session over. Thanks for listening, and be well.
Dan's Journey through Prostate Cancer 