Month 147 – Delayed Reactions?

It’s hard to believe that it’s been over five months since I wrapped up my salvage radiation therapy (SRT) and concurrent androgen deprivation therapy (ADT). For the most part, things have been good, but two things have popped up along the way. One insignificant, the other has me wondering what the future will hold.

Where Oh Where is My Body Hair?

The first seems to be a delayed reaction of the ADT/hormone therapy which was administered nine months ago on 3 May 2022. It seems the loss of testosterone is taking a toll on my body hair.

Maybe this has been going on for a while and I just now noticed it (I mean, really, who monitors the status of their body hair on a regular basis???).

I wasn’t a very hirsute guy to begin with, but I noticed in the shower the other day that what little chest hair that I did have has been diminished by at least half to two-thirds. A little oddball patch of hair on my back right below my collar line is now pretty much gone, and let’s just say that there’s less hair in a few places further south.

Is it a big deal? Of course not. Just superficial, but I find it interesting that it appears to be happening so long after the Eligard injection. Maybe that’s normal for ADT. I’m not going to worry about it (unless my beard starts falling out, then I may be a little concerned).

GI Changes?

The second issue has to deal with what I’ll probably imprecisely call gastrointestinal changes or perhaps a prelude to the thing I dreaded most: radiation proctitis. Whether they’re related to the radiation therapy or not, I don’t know yet. I thought radiation proctitis took longer to take root, but I could be wrong.

I haven’t changed my diet much compared to pre- and post-radiation, so I don’t think it’s diet causing these issues. (Although I did buy a bag of pistachios recently and, with hindsight, they may have aggravated them.)

Pre-radiation, I was a pretty regular guy when it came to bowel movements. Once in the morning and I was good until the next morning. Now, five months after radiation, I’m noticing that I’m having two to four bowel movements a day about a third to half of the days. Some of those extra bowel movements come on with some urgency. So far, it’s not been an issue or caused an accident, but it does raise some concern as to what it may be like a year or two from now if it is, in fact, related to the radiation therapy.

The other GI issue that has popped up is that I seem to have more intestinal gas than I used to. (And, no, it’s not related to San Diego’s wonderful Mexican cuisine!)

The thing that concerns me about being so gassy is the fact that, when I pass gas, it comes out with less effort than it used to. In fact, sometimes, it almost just slips out and I have to wonder if it’s going to be only gas that comes out, and nothing extra (fart vs. shart). My concern is about rectal control over the long term if I’m experiencing something like this now. Again, something to monitor (you know me—I’ve started a tracking spreadsheet) and discuss with the doctor.

What’s Next?

My last PSA test was on 1 November, and we agreed to check it again in March, so I’ll figure out a date to hit the lab for the bloodwork. You may recall that post-radiation PSAs taken in September and November both came in at 0.05 ng/mL, so we’ll it will be interesting to see if it goes down, stays the same, or goes up again. Any wagers???

I should be meeting with the radiation oncologist again in May for my six-month follow-up from the last meeting.

That’s a Wrap

That’s about it for this month. You may recall that last month, I spent my birthday in Death Valley National Park. After visiting there, I headed over to Zion National Park for a short visit. You can check it out by clicking HERE.

Header Image: Canyon in Zion National Park along the Virgin River

Watch “A Medical Oncologist Compares Surgery and Radiation for Prostate Cancer| Mark Scholz, MD | PCRI” on YouTube

This is an informative video that would benefit the newly diagnosed prostate cancer patient.

It talks about some of the more recent advances in radiation therapies that really should be considered when making a treatment decision.

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 #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. 😴💤

    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!

    Zapping Session # 6

    I started my zapping sessions a week ago today and wrapped up my sixth session this morning.

    Practicing filling and holding my bladder the week before the zapping started has paid off. I’ve been successful at filling and keeping a full bladder for every session. Although, on Tuesday there was a delay with the machine of about twenty minutes and I nearly had a bladder explosion on the table. That was cutting it a bit too close.

    Every week, usually on Thursdays, I meet with the radiation oncologist to review how I’m doing and to discuss any side effects and answer any questions. That’s good.

    As far as side effects are concerned, there are a few already popping up.

    I’m not sure that it’s actually from the radiation yet, or simply because of the need to keep a full bladder, I am finding that I’ve been emptying my bladder more frequently. I mentioned that to the nurse, and she asked how frequently. I pulled out my phone and opened my log, looked at the numbers, and told her.
    “You’re keeping a log??? I wish more patients did that!” (It’s good to be a nerd at times.)

    It’s taken me a few days to get in the habit of documenting every time I pee, so that’s why you see so many incomplete entries on the first few days.

    I’m also beginning to sense some skin irritation (itching, mainly) at the zapping site. It’s very mild and intermittent right now, and may increase over time. The irritation seems to be most prevalent within the first few hours after zapping. I guess it’s like a sunburn—it compounds itself as you go along with little time to heal in between. The doctor said that I could apply a moisturizing lotion after being zapped, but definitely not before being zapped.

    The final side effect that’s beginning to take root is fatigue. I’m not sure that it’s actually from the radiation yet, or the fact that I’m peeing frequently through the nights, interrupting my sleep, or a combination of both. A little nap in the afternoon works just fine.

    The radiation oncologists and the technicians both confirmed that they check that my bladder is sufficiently full and my rectum sufficiently empty on their scan before they start zapping to minimize any collateral damage. They said that if I wasn’t properly prepared, they’d tell me to get off the table and drink more water or poop. That’s reassuring to me.

    I have to admit that it’s a tad annoying to have my retirement non-schedule interrupted by having a structured routine again. I was really getting used to not having to commute or show up to the office at a certain time every day. 🙂 Of course, I shouldn’t complain much because the whole process—driving there, waiting, zapping, and driving back—takes less than 45 minutes. Heck, yesterday, I was through the whole thing in exactly 30 minutes.

    I have to admit, too, that I’m being a bit more cautious when going out in public with BA.5 COVID cases on the rise. I continue to wear my mask and am a bit more judicious in determining whether I want to go out. I know that radiation doesn’t necessarily compromise your immune system, but the last thing I need is a week or two delay in zapping if I came down with the virus.

    So that’s my first week/six sessions of zapping under the belt. Thirty-three more to go.

    Be well!

    Month 139 – Eligard Side Effects

    It’s been almost six weeks since my very first Eligard injection on 3 May 2022, and it appears that some of the side effects are kicking in. There are also some other things that I’m experiencing that I’m questioning. But first, a little detour…

    I just returned from a monster 16-day, 5,357 mile / 8,621 km road trip from San Diego to Chicago and back. Each Memorial Day weekend, my sister and her family gather at a small lakeside resort in southern Illinois, along with a few mutual friends and their families. As I hadn’t seen some of my family members in four or five years, I decided it was time to return.

    Not knowing what the side effects from the upcoming radiation and hormone therapy will be, I decided to have one last giant road trip fling for what may be the next year or so. If it works out that I can travel again this autumn, great. But I just didn’t want to leave things to chance.

    [The photo above is Trout Lake in the San Juan Mountains of Colorado.]

    Now back to Eligard side effects…

    Fatigue is the most prominent side effect. I’m constantly tired to varying degrees, and there are times where I just push through it and there are times where I simply give in and take a nap. Thankfully, these really didn’t start kicking in until the tail end of my road trip on my return to San Diego.

    I’ve also noticed a slight increase in the number of trips I make to the toilet in the night. The last six to nine months, things had settled down to where I could sleep through the night or make one trip. Now, though, I’m in the one to three trips per night range, with one night being four trips. That certainly doesn’t help with the fatigue.

    On the positive side, hot flashes have not kicked in yet. That’s great because things are beginning to heat up for the summer here in San Diego and the last thing I need are hot flashes when it’s 90°+ F / 32°+ C outside.

    There are two other things that I wasn’t sure if they’re related to the Eligard or not.

    First, I’ve had a dull ache in my groin and testicles and, second, I’ve had this general, low-grade musculoskeletal ache in the right side of my torso. Both seemed to kick in on my return to San Diego.

    I emailed these symptoms to my urologist, asking if they could be caused by the Eligard, and she didn’t seem to think so. She ordered an ultrasound of my testicles to see what may be happening there (scheduled for Tuesday), and referred me to my primary care physician about the ache in the torso. She didn’t see any reason why either should delay the salvage radiation therapy (mapping scheduled for Thursday).

    My biggest concern about the mapping on Thursday is the timing of filling my bladder and being able to hold it during the process. Often, when my bladder is really full, there’s a strong sense of urgency to empty it, and there’s little time for error.

    That’s about it for now. More to come after the mapping and, as soon as I figure out why Adobe Lightroom (photo editing software) is acting up on my computer, I’ll get my travel blog updated with my trip’s photos.

    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.

    Month 135 – Approaching SRT Decision Point

    My visit with the urologist this week went about as expected.

    We talked about my PSMA PET scan results—negative—and he was of the mindset that those would be the expected results at my PSA level. The scan isn’t reliably sensitive enough when the PSA is hovering around 0.2 ng/ml.

    With my steadily increasing PSA, he said that there’s cancer there somewhere. In his view, it’s likely location is still in the prostate bed, but we can’t rule out that there aren’t micro-metastases elsewhere.

    In reviewing the totality of my case, he commented, “This is one of the trickier cases I’ve seen.” I don’t believe he was too offended when I replied, “No shit, Sherlock.” I guess my frustration of dealing with this over the years came out a little too strong.

    What puzzled him about my case is how long after my surgery the PSA returned and how slowly it was increasing over the years. That led to a discussion about PSA doubling time and how my doubling time is shortening at an accelerating rate.

    As part of that discussion, I asked him how many data points should be included in the PSA doubling time calculations, and he typically uses only the last three to get a current snapshot of where it is now. (I re-ran my numbers when I got home, and using the last three PSAs, my doubling time is 19.9 months.)

    Of course, the engineer in me had to play with that a little, so I went through my PSA spreadsheet and calculated the PSA doubling time if I used the last three values after each test. The results were all over the place:

    His recommendation, of course, was salvage radiation to the prostate bed.

    He thought that salvage radiation still had a chance of being curative at this point, and given that I’m 64 years old, he thought that I would have plenty of years ahead of me should I choose to go down that path.

    We talked about long-term side effects. He thought that there was a 20% to 30% chance that my stress incontinence would worsen, as would my sexual function given where it’s currently at now. He wasn’t confident enough to speak about the chances of rectal issues, at least in the numbers that I was seeking. I expressed concern about the incontinence, and he reminded me that they can take care of that with an artificial sphincter. Great. Another surgery.

    I did ask how much longer I could kick this can a little farther down the road, and he didn’t seem to think that that was a good idea at this point. My stomach turned into knots.

    We agreed to set up the consult with the radiation oncologist, as well as retest my PSA in early April.

    Wednesday afternoon, I received a call from the scheduler trying to set up the radiation oncologist referral. She gave me the option of going to Naval Medical Center San Diego—where I used to work and had a previous referral—or going to University of California San Diego (UCSD). As good a medical treatment facility as NMCSD is, I opted for UCSD. If nothing else than for a second perspective, plus I believe UCSD will have more state-of-the-art equipment and a lower turnover rate in medical teams.

    Thursday, morning, UCSD called and we’re set up to meet next Thursday, 17 February 2022. I was a little surprised when they told me that it would be at their Radiation Oncology center that’s about three-quarters of a mile (one kilometer) from my house instead of their main hospital in San Diego.


    As you regular readers already know, I’ve been fearful of getting to this point for a while now. Whether my fears are irrational, unfounded or not, I don’t know, but they’re real for me.

    My fears center more on having very real, quality of life-impacting side effects from the radiation than on whether or not the radiation will be curative. For some inexplicable reason, my gut intuition is that something will go awry and I’ll be in that 1% or 3% or 10%—or whatever it is—group that gets to experience those side effects impacting quality of life. The radiation oncologist is going to have to give a strong sales pitch to convince me the risks are minimal.

    There will be ton of soul-searching and thinking in the days and weeks ahead.

    Stay tuned.