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 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.

    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.

    Zapping Session #1 – Done!

    Just a quick post-zapping session post…

    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 need a nap. Or a beer. 🤣

    Be well!

    Day 4,255 – Green Light for SRT

    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.

    DateStart
    Drinking
    Stop
    Drinking
    Urgency
    at 9:45 a.m.

    (1-10)
    Need to
    Empty
    Bladder
    Volume
    (1-10)
    30 June8:459:15510:455
    1 July8:359:10710:157
    2 July8:309:0589:306
    3 July8:459:15410:107
    4 July8:409:15410:255
    5 July8:309:15410:405

    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.

    Be well!

    Month 138 – So Far, So Good (?)

    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.

    Day 4,178 – PSA Results & Stuff

    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.

    Month 137 – The Decision

    It’s been an interesting few weeks of conversations, concern, and coordination. But first a little digression that has been a factor in this whole process.

    When I walked from my home to the radiation oncologist’s (RO) office back in mid-February, the nurse took my vitals and my blood pressure was elevated to the point it both surprised and concerned me (and the nurse). We chalked some of it up to “white coat syndrome,” and left it at that for that visit. Even if it was “white coat syndrome,” it warranted further investigation.

    In early March, I started experiencing headaches and even some intermittent numbness of varying intensity on the left side of my face. A bit unnerving. I scheduled an appointment with the VA Urgent Care facility and they checked me out. My blood pressure was still elevated (but not as high as at the RO office), and she didn’t suspect that there was a TIA stroke going on. An MRI confirmed no abnormalities in my brain. (Sorry. I couldn’t resist this classic scene from Young Frankenstein. Anyhow…)

    Obviously, trying to figure all of this out took precedence over scheduling salvage radiation therapy (SRT), but it’s also related to SRT and androgen deprivation therapy (ADT) because some studies have shown that there may be an elevated risk of cardiovascular events while on hormone therapy. With an elevated blood pressure and a family history it became a question that I wanted to pose to the RO.

    RO Call, Tuesday, 29 March

    You may recall that the RO told me that I could use the weekend to think about whether or not I wanted to proceed with concurrent ADT or just do straight radiation therapy. He said he would call me between 8 a.m. and 8:30 a.m. Monday morning for my decision. He didn’t.

    However, he did call early Tuesday morning and apologized for missing the call on Monday. He said that the school his kids attend dropped their requirement to wear face masks, and they came home with a common cold and gave it to him. (Justification for continued mask-wearing.)

    When we began the conversation, I told him that I was ready to do the concurrent ADT—in line with his thoughts—but I wanted to discuss what was going on with my blood pressure. He said that the cardiovascular risks were “extremely small,” especially with me scheduled to be on ADT for only six months.

    I told him about my family history. My dad survived a heart attack at 54 and died in his sleep at 69. We never did an autopsy, but we suspect it was either a blood clot that let loose from major injuries he suffered in a auto accident sixteen months earlier or another heart attack that did him in. My paternal grandmother died at 69 from an aneurism on her heart, and my maternal grandmother died at 66 of a massive stroke.

    I also let the RO know that I had been successful in losing 15 lbs. / 7 kg in the last few months and he reminded me that hormone therapy generally leads to weight gain if you’re not very careful.

    After all of that, the RO’s enthusiasm for doing concurrent ADT waned and he was more inclined to suggest straight radiation by the end of the call.

    At that point in time, though, I had not yet had my MRI—that was scheduled Wednesday evening—and I told the RO that I a) wanted to get the MRI results and b) talk to my primary care physician (PCP) about all of this once he had the results.

    PCP Call, Thursday, 31 March 2022

    In my call with my PCP, we agreed to put me on medication to help lower my blood pressure as I continue to lose weight. He also was able to give me the MRI results over the phone which surprised me. The technician told me it would take two to three business days to get the results, and he had them in about eighteen hours. Not complaining.

    When I specifically asked him about the ADT and associated cardiovascular risks, he, too, said they were minimal. Even so, he was of the mindset to skip the ADT now mainly because of its other well-known side effects of hot flashes, enlarged breasts, weight gain, mood swings, fatigue, etc.

    I thought that was interesting.

    Urologist Call, Friday, 1 April 2022

    Thursday, I emailed the urologist and update on all of this and asked for her insights. She called and we had a good discussion. She, like the others, said the cardiovascular risks were small and that the benefit of doing the ADT concurrent with the SRT was significant. She was definitely in the concurrent ADT camp.

    When I spoke with the RO on Tuesday, one of the questions that I had was what drug would they use for the ADT. He thought the VA would use either Lupron® or Eligard®, so I confirmed that with the urologist. It would be a single shot of Eligard® that lasts for six months. Interestingly, she said the SRT could start about a month after the shot; the RO said he’d start SRT about two months after the shot.

    I mentioned to her that I have an in-person appointment on 10 May and she suggested I could get the Eligard® shot then. Or, if I wanted to get it sooner, I could call for an earlier appointment.

    Urologist Office Call, Monday, 4 April 2022

    The Urologist’s office called to schedule the Eligard® injection. It’s set for 3 May 2022.

    I did tell the scheduler that I had to have the final conversation with the RO next week, and that I would cancel the appointment if we decided to do the salvage radiation without hormone therapy. He was okay with that.

    I will email the urologist to ask for a “before” PSA test to be done as a baseline starting point. I have some other bloodwork on order for my 21 April PCP visit, so I’ll see if the PSA can be added to that order.

    Radiation Oncologist Call, Tuesday, 12 April 2022

    One thing the RO told me when we last spoke was that he was going on Spring Break vacation with his kids, and wouldn’t be back in the office until 11 April. While he was out, I emailed him a summary of everything above.

    We chatted for a good half hour this morning reviewing everything, and with the MRI results not showing anything, he moved back into the “leaning concurrent ADT” camp. His training is to tackle the cancer aggressively.

    The Decision

    Based everything, I’ve decided to go ahead with the concurrent ADT and SRT.

    Barring anything goofy happening, the timeline going forward looks something like this:

    • 18 April – Bloodwork done for PCP visit, hopefully including pre-treatment PSA. (Still trying to get that added to the order.)
    • 21 April – PCP appointment.
    • 3 May – Eligard® injection.
    • 10 May – Previously scheduled in-person appointment with the urologist.
    • Mid-June – Perform body mapping.
    • Mid- to Late June – Start 7 weeks of SRT.

    The RO said he’d have his team call me later this week to nail down specific schedules for the mapping and zapping.

    Summary

    I wish I could say that I was relieved at the end of the call this morning, but I wasn’t. This was committing to a course of action that I really wish I didn’t have to do. Life isn’t fair, I get it. I also get that it’s the right thing to do.

    Wish me luck.