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!

Day 4,192 – Eligard Injection

This morning was not fun at all.

I checked in at 7:30 a.m. for my 8 a.m. appointment and was a bit nervous but doing generally okay. But around 8:05 a.m., the nurse came out and said, “I know you’re here for some medication, but the doctor forgot to enter the order for it to be administered into your record. We’re trying to track her down now and we’re not sure how long it will take.”

Needless to say, I was not a happy camper.

About 8:45 a.m., the nurse came back out to the waiting area for another patient, and I interrupted and asked him the status of tracking down the doctor. “Oh. We haven’t found her yet. We’re trying to contact any doctor but most don’t come in until after 9 a.m.”

Still not a happy camper.

As you all know, I’ve anguished over the decision to move forward with androgen deprivation therapy (ADT) for a while now. Once you make that decision, you want to move forward with it and psychologically prepare yourself for the event. When you’re given an extra hour and a half, your mind begins to race and to question whether to move forward with this essentially irreversible procedure. At least that’s what my mind did. Call me silly.

The injection itself went well. In fact, it was not much worse than getting my second COVID booster shot last week (or any vaccination). It’s been about three hours since the injection, and the injection site isn’t even sore. It was pretty much a non-event. Time will tell what other side effects will kick in, and how severe they may be.

Well, the stress from this morning has worn me out. Time for a little nap.

More to come, I’m sure.

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.

Dr. Kwon Video – Part 2

Here’s the second part of Dr. Kwon’s video. Like the first video, it’s very informative (perhaps even more so, at least for me).

Even though I had seen similar statistics before, one of the kickers for me is that only 33% of recurrent cancer is found in the prostate bed (local); 45% will be metastatic; and 22% will be both local and metastatic. As Dr. Kwon rightly points out, knowing where the cancer is located will guide your treatment decisions, and that’s why I have been so reluctant to blindly step into salvage radiation therapy without having first identified the location of the cancer. Why risk the possible toxic side effects of radiation if you’re not radiating in the correct location?

In my previous post, I mentioned that Dr. Kwon was a pioneer in dealing with oligometastatic prostate cancer. At the beginning, many in the profession dismissed his work out of hand (I’ll admit I was skeptical, too), but it seems that over the last 10 years, his work has gained the respect of others and is supported by further research.

In any case, this video is 31 minutes long and I encourage you to watch it.

Timing of initiation of ADT for men with biochemical progression after first-line surgery — THE “NEW” PROSTATE CANCER INFOLINK

An interesting study concerning the timing of Androgen Deprivation Therapy (ADT).

For many years your sitemaster has been advising patients that overly early use of androgen deprivation therapy (ADT) in many men with progressive prostate cancer is not necessarily the best decision (for a number of possible reasons). The benefits of such early ADT — in terms of metastasis-free survival (MFS) and/or overall survival (OS) — […]

Timing of initiation of ADT for men with biochemical progression after first-line surgery — THE “NEW” PROSTATE CANCER INFOLINK

Day 3,895 – Insurance Update

I just received a quick update from my health insurance company regarding coverage of the Ga68 PSMA PET scan at UCLA—the quick turnaround surprised me. It appears to be good news, but it was a little squishy, so I had to ask for confirmation of a few things.

In their email to me, they listed the contractual amount that they would pay out for each CPT code that I gave them, but that’s all they said. It sort of implies that I’m covered, but it doesn’t say so explicitly. Needless to say, when dealing with insurance companies, I want things to be very explicit without any loopholes.

I just sent them and email asking them to:

  • Confirm that I am covered under my employer-provided healthcare plan.
  • Confirm whether or not UCLA Department of Nuclear Medicine is considered to be in-network or out-of-network (different deductibles).

Hopefully, I get that confirmation early next week and can share the information with my doctor.

More to come…

Be well!

Watch “Rising PSA: How Soon Should You Get a Scan? | Thomas Hope, MD & Mark Moyad, MD | 2021 PCRI” on YouTube

Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.

COVID-19 and prostate cancer management — THE “NEW” PROSTATE CANCER INFOLINK

They’re looking for someone in the U.S. whose treatment has been impacted or delayed by COVID-19.

Do you live in the USA and believe that your prostate cancer care may have been seriously affected by the COVID-19 pandemic?

via COVID-19 and prostate cancer management — THE “NEW” PROSTATE CANCER INFOLINK

Month 116 – Cancer Treatment Decisions

One of my regular readers of this blog and I have amazingly similar stories when it comes to our diagnosis and treatment. We were both diagnosed around the same age, our PSA levels were quite close to each other, and we both opted for surgery. Both of us had undetectable PSAs well after the surgery—until we didn’t. His PSA became detectable around the three year point, and mine became detectable at a few months shy of five years.

He opted to begin salvage radiation therapy (SRT) along with androgen deprivation therapy (ADT) when his PSA hit 0.08 ng/ml. And, if you’ve been following my blog for any amount of time, you already know that I’ve been punting that decision after nearly every PSA test, with my PSA bouncing around in the 0.14-0.16 ng/ml range without seeking SRT or ADT yet.

Who made the right decision?

Both of us.

When cancer is initially introduced into your vocabulary—and even long after—you’ll be faced with a myriad of decisions to make. Is treatment warranted, or can I go on active surveillance? If treatment is needed, do I opt for surgery, radiation, or one of the newer methods available? Which doctor has the most experience? Which hospital has the right equipment? The list goes on and on.

Many of those same questions are applicable in the case of recurrence, too.

When it comes time to make some of those decisions, remember first and foremost that it’s your body, your family, and your circumstances. You—and not anyone else—have the final say.

Do your research using reliable, trusted sources and don’t be afraid to ask the doctor questions or call them out on something you’re not comfortable with. Seek multiple opinions from the doctors that could provide the different treatment options to you (keeping in mind, of course, that some may push their own specialty over others).

Talk to other patients or read their silly blogs to see what their experience has been, knowing that each individual cancer case is unique and will not apply directly to your own situation.

Don’t let the words “prostate cancer” scare you into acting immediately. Unless your Gleason score is an 8 or 9, you do have a bit of time to do this research and consulting with different specialists. I made my decision to have surgery rather quickly and never consulted with a radiation oncologist to see if that would be a viable first treatment option for me. Do I regret that? No. But, with a Gleason 6, I should have slowed things down and have had the meeting anyway.

One of the options that is often overlooked is to do nothing. Okay, it’s not exactly doing nothing—you’ll definitely want to be on active surveillance—but you don’t have to leap right into a treatment option if your cancer is  low grade / not aggressive. My sense is that more and more doctors are beginning to embrace that approach to avoid over-treatment.

That brings me to my final point. Once you make a decision, don’t look back. Embrace it and move forward. If you’ve done your homework correctly, you’ll know in advance what the consequences of that decision may be, and you’ll be more accepting of them if and when they do come.

If my PSA continues to slowly increase and, at some point my body scan lights up like a Christmas tree because I haven’t started SRT, I’ll probably curse like the sailor I once was and say, “I knew this was a possibility. What’s next?” But I’ll also know that I will have had six or seven or more years of high quality of life without any short or long-term side effects from SRT and/or ADT, and that is of great importance to me. As much science as there is in the treatment of prostate cancer, in the end, it’s an educated crap shoot.

Who made the correct decision?

Both of us. One of us. Neither of us.

Time will tell.

Stay Well! Wear A Mask! Wash Your Hands! Stay Home!

Month 114 – Detectable PSA After Surgery-Treat or Watch?

Well, I missed last month’s post and this month’s is late. You would think that with all the quarantine time on my hands, I would have been a writing fool. Not so.

I did come across this study a while back that talks about PSA coming back after surgery and whether it’s wise to treat or watch.

Low Detectable Prostate Specific Antigen after Radical Prostatectomy—Treat or Watch?

My interpretation of the paper with my specific numbers kind of reinforces what the doctor told me at my last visit: that I’m okay continuing to watch my PSA for now. Others with different numbers may come to a different conclusion. We’re all unique, after all.

I’m scheduled for my next follow-up with the doctor the first week of July, so I’ll have to get my blood drawn for the PSA test in late June, assuming the COVID restrictions are lifted by then.


You may recall my last post where I talked about taking medication to lessen the nerve pain in my leg. I started the medication on 30 March 2020 and I seemed to hit the side effects jackpot. They knocked me for a loop, at least initially (hence, no writing).

Headaches, dry mouth, nausea, diarrhea, and extreme fatigue plagued me the first two weeks, but the good news was that the nerve pain was reduced a good 50% to 70%. The side effects were so troubling in the first few weeks that, by the middle of the third week, I cut the dose in half, but the nerve pain returned.

I’m back on the full dose now, and my body seems to have adapted to a degree. The fatigue is still present, the dry mouth is still there, and the nausea is very mild and only early in the morning. (No, I’m not pregnant.) The pendulum swung in the complete opposite direction on my GI system–constipation is now the norm. Sorry. I’m oversharing once again.

We did discuss physical therapy as part of my treatment plan, but that was just as COVID was rearing its head, so that’s been put on hold for now.


I had been fortunate enough to be able to work from home since 16 March because of COVID-19, but I’ve returned to work in the office at the hospital beginning last week.

On the whole, I’m pretty comfortable being in the office again. Sure, there’s a more risk than just sitting at home, but my office is well away from a high-traffic area of the hospital and I’m literally the only person here. I don’t have to go into any of the wards, and the walk from my office to the exit is relatively short. I probably feel more at risk in the grocery store.

California was one of the first states to impose a stay-at-home order and we’re being very cautious and deliberate in our re-opening. Some will say that we’re being too slow, but not me. Our efforts really did make an impact on controlling the virus. We’ve got nearly 40 million people in the state and we have just over 80,000 positive cases and 3,240 deaths. Contrast that with New York state with 19.5 million residents with over 351,000 positive cases and 28,339 deaths.

No matter how you slice it, though, it’s universally tragic. We’re all anxious to get this under control and behind us.

Stay well!