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.
Sharing my prostate cancer experience since November 2010
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.
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.
Header image: Premature Desert Blooms, Anza-Borrego State Park, near Borrego Springs, California
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.
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.
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
Header Image: Kings River, Kings Canyon National Park, California
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.
Header Image: Oak Creek near Sedona, Arizona
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!
How my fatigue has me feeling this week:
Three more sessions. Just three more sessions…
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.
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).
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.
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.
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.
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!
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.
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.
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.
You may want to turn down the volume before playing. The pre-game music was a bit loud.