Tag: Side Effects

Month 161 – Crappy Development

On By DanIn Prostate Cancer, Radiation Therapy, Side Effects16 Comments

If you’ve been reading this blog from the beginning, you already know that no detail is spared in the telling of this prostate cancer tale. If you haven’t read some of the early, gory details, well, buckle up, Buttercup.

Let’s talk bowels and 💩.

BIOLOGY AHEAD

LAST CHANCE. If you don’t want to follow along, check out my travel website HERE or my photography website HERE.

One of the known possible long-term side effects of radiation when it comes to prostate cancer is issues with your rectum and bowels, and those side effects can manifest themselves years after the radiation was completed. (It’s been 19 months since my last zapping session in August 2022.)

Something has changed with my bowels in the last few months, and I’m wondering if this is the beginning of those side effects.

The engineer in me is trying to evaluate different variables to see if these changes could be the result of something else.

As a baseline, I used to have one bowel movement a day in the morning and I was good for the day. Also, I’m a creature of habit, and my diet really hasn’t changed at all, so that’s likely not a contributing factor.

One other thing is the timing of the onset of my symptoms. It’s about the same time that I started my daily walking regimen in earnest in February. I doubt they’re related, but it is noteworthy.

So what’s different? Well:

  • About half the time, I’m now having two to three bowel movements a day. One recent day, there were five over the course of the entire day.
  • My stools have changed from well-formed “logs” to thin, soft “snakes” or “ropes” that tend to fall apart.
  • I find myself having short periods where I’m quite gassy and flatulent without any likely dietary cause (e.g., not eating frijoles for breakfast, lunch, and dinner).

The silver lining in this cloud is that I haven’t had any increases in bowel urgency, so this is quite manageable at the moment. I will admit, though, that there have been a few times when I’ve been on my daily walks when I felt the need to pass gas, and I felt I was on the edge of getting more than I bargained for if I did. Luckily, no accidents yet.

I haven’t done a ton of research on this yet, but a study out of Sweden, Salvage radiotherapy after radical prostatectomy: functional outcomes in the LAPPRO trial after 8-year follow-up, looked at the long-term side effects of salvage radiation therapy. The summary of their conclusions on bowel function:

Fecal leakage was more common after radiotherapy as found in answers to question about ‘accidentally leaked liquid stool’ with 4.5% in Radiotherapy group versus 2.6% in Control group, ‘accidentally leaked liquid stool’ once a week or daily, Odds ratio (95% CI): 1.90 [1.38; 2.62]), ‘mucus from anus’, 6.8% versus 1.5% (4.14 [2.98; 5.76]), ‘leakage of feces in clothes’, 5.6% versus 2.4%, (2.18 [1.18; 4.04]), respectively in Radiotherapy and Control groups (Figures 2, 3A and 3B and Tables S2 and S3 in the Supplement). Bleeding from the anus was more common after salvage radiotherapy, 8.6% versus 1.2% in control (3.21 [2.32; 4.44]) as was flatulence, 25% versus 14% (1.82 [1.40; 2.37]), whereas distress due to bowel symptoms did not differ, 7.8% versus 6% (1.27 [0.90; 1.80]). Defecation urgency was more common in the group given salvage radiotherapy as reported in answers to questions about need ‘to rush to the toilet’, 14% versus 5% (3.22 [2.46; 4.21]), ‘open your bowels again within 1 hour’, 17% versus 9.4% (1.53 [1.18; 1.98]). There was no statistically significant difference in ‘how often do your open your bowels’, 3% versus 2.5% (1.23 [0.92; 1.64]).

Carlsson, S., Bock, D., Lantz, A., Angenete, E., Koss Modig, K., Hugosson, J., Bjartell, A., Steineck, G., Wiklund, P., & Haglind, E. . (2023). Salvage radiotherapy after radical prostatectomy: functional outcomes in the LAPPRO trial after 8-year follow-up. Scandinavian Journal of Urology, 58, 11–19. https://doi.org/10.2340/sju.v58.7318

Another silver lining: no fecal leakage, mucus, or rectal bleeding so far. Woo-hoo!

Needless to say, this will be part of my conversation with my primary care physician on 9 May and with the urologist on 14 May. I’ll likely rope the radiation oncologist into the conversation, too.

I was reluctant to talk about this earlier because I wasn’t sure if this was a temporary thing or something longer term. This has been pretty persistent for about two months now, so I thought it was time to talk about it. As long as things don’t worsen, I can live with what’s happening right now (although I would prefer that I didn’t have to if I’m being perfectly honest).

I’ll have to admit that I’ve been feeling a general sense of anger and perhaps regret about this whole situation.

The source of those emotions isn’t from the side effects themselves, per se, but rather from this entire process that tends to move patients in the direction of what is considered to be overtreatment.

I may flesh this out in a longer, separate blog post one day, but when I see the likes of Dr. Scholz and others beginning to say, “Hmm. Maybe we should let the PSA rise so we can find out where the cancer is at before we start the treatments that could have life-long side effects adversely impacting the quality of life,” I get annoyed. Annoyed because I’m beginning to agree with that line of thought more and more, instead of the old, “It’s better to attack it while the PSA is low even though we don’t know exactly what’s going on.”

It’s frustrating because, my gut instinct all along was to delay until we knew where the cancer’s location, and I let the more rapid increases in my PSA, my shortening PSA doubling time, and the current “industry” guidance to act sooner rather than later get the better of me.

The frustration will continue as I move into the next chapter. I’ve been looking for studies on the best time to start androgen deprivation therapy (ADT) for someone in my situation and, from what I’ve seen so far, the guidance seems to run the full spectrum of starting early or delaying for years. Throw in the decision of whether it’s just ADT or ADT plus some sort of antiandrogen therapy, too.

I get that there are advances in research and technologies and that things are constantly changing. But at this point, I’d be happy for a clear path forward without adding additional side effects. (But I’m experienced and knowledgeable enough to know that’s just a pipe dream at this point.)

Rant over. Time to invest in some toilet paper company stock.

What’s next?

  • 1 May – PSA test
  • 9 May – Appointment with primary care (routine physical)
  • 14 May – Appointment with urologist.
  • TBD – Another PSMA PET scan if my PSA warrants it OR wait another three months for the next PSA test.

Month 149 – Slow Flow?

On By DanIn Prostate Cancer, Radiation Therapy, Side Effects1 Comment

I may be stepping into new post-radiation territory for me—emphasis on may. That, or it could all be in my head.

Over the two or so weeks, I’ve noticed that when I go to empty my bladder, there are times where my urine flow seems to be a tiny bit slower and weaker that it was not too long ago. The engineer in me really wants a quantitative way to measure it to confirm whether or not my mind is playing tricks on me, but that isn’t going to happen.

Fortunately, there is no pain when urinating or blood in the urine, nor are there any issues with intermittent flow.

I’m hoping that this isn’t an early sign of radiation-induced strictures that are starting to form that have to be dealt with at some point in the future.

On the plus side of things, my frequency of needing to run to the bathroom is down considerably, especially at night. I can make it through most nights without having to run to the toilet more than once, if at all. But that means that my bladder is full in the morning, and the flow coming out on that initial morning pee isn’t as “fast and furious” as it was a few weeks ago.

I’m still waiting to hear from the radiation oncologist’s office concerning my six-month follow-up appointment which, should happen in May. I do have an appointment with the VA urologist on 30 May, and I may try to get another PSA test done before then.

Other than that, not much else to report this month. Be well!

Header Image: Spring in the Neighborhood

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

On By DanIn Prostate Cancer, Radiation Therapy, Side Effects, Surgery9 Comments

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 4,385 – RO Three-month Follow-up

On By DanIn Prostate Cancer, Radiation Therapy2 Comments

My somewhat premature three-month follow-up was last Thursday, 10 November, and went about as expected. On the whole, he was pleased with where I’m at.

I reviewed several things with him.

First, we talked about my PSA being 0.05 ng/mL both in September and again in November. He was pleased with the number and didn’t think there was any significance in the fact that the two numbers taken about six weeks apart were the same. He chalked the reading up to the hormone therapy and said that at this early stage, my PSA was “meaningless” in determining the effectiveness of the radiation. We’ll have to see what it is a year or two down the road to determine that. No big surprise there.

He did say that I shouldn’t panic if the PSA number starts to go up, as long as it isn’t a huge leap or is increasing rapidly. He expected it may go up a bit and then stabilize and stay at a certain level as the hormone therapy wears off. Time will tell if he’s right.

I mentioned that my urinary frequency was back to pre-zapping levels, with far fewer trips to the toilet in the middle of the night (0-3). The urgency was slightly elevated from my pre-zapping days, but is tolerable as long as I act on it.

The one concern that I really wanted to talk about—and is the one I feared the most about radiation—were bowel issues.

The week before I went on my mini-vacation to Kings Canyon National Park, something was afoot in my bowels. I was having three to five bowel movements a day for about four days when I normally get by with one. I was thinking, “Oh, crap! Is this from the radiation??” I was concerned enough that I almost canceled my trip, but when things calmed down the weekend before, I decided to go ahead.

In the last two weeks or so, I’ve been suffering from what I call IBH—Itchy Butt Hole. (The nurse doing the prescreen interview cracked up when I told her that.) I also seem to be gassier than usual, and my diet hasn’t changed to cause an increase in gas production.

The doctor was a bit puzzled by this development, suggesting that the radiation may have irritated hemorrhoids and that a topical cream may help resolve the IBH. He was stumped by the increased gas and suggested that, if it persists, I talk to a GI doctor. He did say, however, if radiation had damaged my bowels, it would be more substantial than what I’m experiencing, so that was good to hear. Even though, I’m going to track this closely to see if things continue to worsen.

In the end, the radiation oncologist was quite pleased with where I’m at. We’ll follow-up in six months.

I have an appointment with the urologist on 13 December 2022, so we’ll see what he has to say and map out a PSA testing schedule.

Be well!

Header image: Premature Desert Blooms, Anza-Borrego State Park, near Borrego Springs, California

Day 4,366 – Road Trip Reflections

On By DanIn Emotional Aspects, Prostate Cancer3 Comments

About two weeks after I completed my salvage radiation therapy, the concessionaire that runs lodging in some of our national parks was having a flash sale, and I was eager to book something to pamper myself after the summer of radiation. I was still beat up from the therapy, but I went ahead and booked the room anyway, thinking that it’s easier to cancel the reservation if I wasn’t feeling up to it than to make one later on.

I came close to cancelling the reservation, but didn’t.

Immediately after my last blog post on 11 October, my side effects took an unexpected turn when my bowels started acting up.

Normally, I’m a pretty regular guy with one bowel movement a day, usually in the morning. But for those four or five days before my trip, I was having three to five movements a day in conjunction with an irritated anus (itchy and burning sensations). Fortunately, things calmed down just before the trip and I went anyway.

Loss of bowel control has been one of my biggest fears with doing the radiation so, needless to say, this was quite alarming for me. I never actually lost control during any of these episodes—it was just increased frequency which was workable but annoying. It’s definitely something I’ll discuss with the radiation oncologist when we meet on 10 November.

Going into the trip, I knew that I wasn’t in the same physical condition as I was before the treatment, but I was a bit surprised by how much had changed.

I hiked the Zumwalt Meadow trail in May 2021 and did just fine. It’s a relatively flat trail at about 5,000 feet / 1,500 meters elevation with a somewhat tricky part through a rock fall area. I hiked the trail again on this trip, but found it was much slower going for me. As I got to the rock fall area, I could feel the burn in my legs as I was climbing up and down the rock steps placed on the trail. I guess that’s the hormone therapy kicking in, weakening my leg muscles.

Zumwalt Meadows Trail from Google Maps

Each day in the park, I found myself heading back to the room in the lodge for an afternoon siesta. Perhaps it was the altitude, the cool morning autumn air, and the hiking that did me in (or a combination of all), but I found that my stamina was diminished and needed the little nap.

Of course, that whole experience affected me mentally and emotionally as well. Initially, I was frustrated that I couldn’t do some of the simple things that I did before—or at least couldn’t do them as easily as I had done them before. But those feelings didn’t last too long, thankfully.

By the end of the trip, I turned more to acceptance than frustration.

I accepted the fact that, for this trip, my body had been beaten up pretty badly and I really did nothing to prepare for it between the time the side effects were subsiding and the start of the trip. After meeting a gregarious couple who were in their 80s navigating the rock fall area very cautiously, I reminded myself that what matters most is that I’m out here doing this—just as they were—and it mattered less how fast or agile I was. We just have to adapt to our new limitations.

Even so, it can be difficult to accept the fact that my body may no longer be able to cash the checks my mind is wanting to write.

But I also recognize that I need to take ownership in restoring or preserving my fitness level by doing more physical activity. There are things I would like to see and do yet, and if this is my new “best,” then some of those may now be in question, and that would be disappointing to say the least.

In the end, it was good that I went and learned what I did. It helps frame my mind for what I need to do going forward, and what may or may not be possible for future trips.

Be well!

My original plan was for three nights in Kings Canyon and then return home, but at the last minute, I decided to add another day and drove through Yosemite National Park and over Tioga Pass to see the autumn colors in the Eastern Sierra Nevada mountains near Bishop, California. You can check out my posts on my other blog here:

Kings Canyon and Cedar Grove Lodge

Tioga Pass to Eastern Sierra

Enjoy!

Header Image: Kings River, Kings Canyon National Park, California

Month 142 – Two Weeks After SRT Ended

On By DanIn Prostate Cancer5 Comments

After a hectic summer, it’s about time that I get back on my regular posting schedule of at least one post a month on the 11th of each month.

There’s good news and there’s less good news.

The good news: On the fatigue front, that’s been slowly but surely abating and my energy levels are improving steadily. I still have my moments, but it’s much better than it used to be. I expect that my energy levels will be back to pre-radiation therapy levels by the end of next week at the rate they’re going. Also decreasing are the number of trips to the toilet during both the day and night (about 2-3 trips each night). Hopefully, there’s still room for improvement there.

The less good news: The pain in my back, unfortunately, has intensified. Initially, it was a low-grade ache with occasional spikes in pain if I moved in an unexpected way. Now, it’s really become a more constant and prevalent ache, and it takes even less movement to set off a spike in pain. I’m guessing that’s related more to the ADT than anything else, and I’m trying to get some answers from my medical team.

Barring any hiccups, my plan is to get my blood drawn for my first PSA test during ADT and after SRT on Tuesday, 13 September. It’s probably premature (but that’s what the urologist ordered), and I have no idea what to expect. The ADT has had four and a half months to do something to my PSA, but the SRT has had only two weeks. Anyone care to guess?

As a refresher, my PSA was 0.36 ng/ml on 18 April 2022; the ADT was administered on 3 May 2022; and SRT ran 7 July – 26 August 2022. I’ll post the results as soon as I have access to them.

I have my follow-up appointment with the urologist on Tuesday, 20 September, and I just remembered that I need to call the radiation oncologist’s office to get on their schedule for late November or early December.

Be well!

Header Image: Oak Creek near Sedona, Arizona

Day 4,308 – What a Difference

On By DanIn Prostate Cancer4 Comments

What a difference a day makes!

I don’t know whether it’s the adrenalin rush of having finished my radiation therapy still lingering, or it’s something else, but I’ve had more energy today than I’ve had in several weeks. And I’m not complaining!

Don’t get me wrong, I’m still firing on about six cylinders at best, but it’s 5 p.m. and I’ve been up since about 7 a.m. and haven’t had the need for a nap or rest period yet today.

I have to wonder if it was subconscious stress that was doing me in the last few weeks of treatments. I would get overly obsessive about the bladder filling routine, and particularly frustrated if things didn’t go quite to plan—especially when I came up short and had to delay. I felt as though I wasn’t holding up my end of the bargain and that would add stress. (Just an uneducated arm-chair psychologist’s theory.)

Speaking of bladders, without the 1.5 to 2 liters of water I would be drinking every morning, my trips to the toilet have been far fewer today, and only three trips last night. That’s another positive sign.

I’m sure there may be setbacks, but let’s hope this trend continues. I’m so ready to get back into a more normal routine. Besides, the dust bunnies 🐇 in my house have turned into dust elephants 🐘 over the last few weeks because of my fatigue, and I need to go on a deep cleaning safari. That, or buy them some peanuts, say they’re my pets, and call it a day. 🤔

My day has been great. I hope yours has, too!

Zapping Session #16 – Update

On By DanIn Radiation Therapy, Side Effects, Treatment5 Comments

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

On By DanIn Prostate Cancer, Radiation Therapy, Side Effects6 Comments

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!