Month 138 – So Far, So Good (?)

It’s been just over a week since I’ve been injected with my Death to Testosterone juice, a.k.a., Eligard, and things seem to be going okay so far.

The injection site was through being sore within a matter of hours after the injection, so that was a positive thing. (My arm was sore from my second COVID booster for about 48 hours after that injection.)

About the only real side effect from the Eligard that has kicked in is a bit of tiredness or fatigue. It’s as though I’m firing on seven out of eight cylinders right most of the time. Nothing that is debilitating, but it is noticeable. No hot flashes or wild mood swings yet.

I did email the radiation oncologist to let him know that I did, in fact, get the injection, and his response kind of hinted at the fact that it may take a few weeks for the Eligard side effects to really kick in. Time will tell.


As a diversion to all of this, I spent the afternoon watching the my hometown Chicago Cubs take on my adopted hometown San Diego Padres at beautiful Petco Park. I can’t say that I’m a huge baseball fan, so this is a once-every-few-years thing that I do when the Cubbies come to town. One day, I’ll make it to Wrigley Field for the first time ever (blasphemy that I haven’t been, I know).

I’ve got a few other fun things lined up between now and the start of the Zap Fest in late June and hopefully the Eligard side effects don’t kick in and ruin those plans.

A few photos from the game today.

Be well!

You may want to turn down the volume before playing. The pre-game music was a bit loud.

Day 4,192 – 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!

Day 4,178 – PSA Results & Stuff

I went for my pre-physical appointment blood work yesterday and was surprised to have the results back today. It used to take the VA two or three days to post them online.

In any case, my PSA climbed once again from 0.33 ng/mL on 11 March to 0.36 ng/mL yesterday, 18 April. PSA doubling time dropped from 14.4 months to 12.7 months, indicating a continued acceleration which makes sense.

I did schedule my mapping with the radiation oncologist and, in my discussions with the urologist about the PSA test, we agreed to reschedule my 10 May appointment into September after the salvage radiation therapy was completed. My schedule now looks like:

  • 21 April – Appointment with PCP for a lube, oil, and filter change.
  • 3 May – Eligard injection.
  • 16 June – Body mapping with radiation oncologist.
  • 13 September – Urology appointment

We didn’t set an actual start date for the zapping, but I suspect it would be a week or two after the mapping and it would last through July and into August.


My emotions in the last week or so have run the gamut.

I can’t seem to get it out of my head that, once I start down this path, my life as I currently know it will be gone. Much of that is probably unfounded and a gross exaggeration, as the rational part of me knows that the chances for long-term, quality of life-impacting side effects are minimal. Yet the emotional side of my pea-sized brain is dwelling on that and I can’t seem to shake it.

Of course, that leads me to anger over this insidious disease and the impact it has on your life. Aside from the aches and pains associated with my vintage, high mileage body, it’s difficult to reconcile that within me there’s the army of cells wanting to kill me even though I’m feeling generally well. The fact that you have to take drastic action to fight off those cells—again—makes the situation even more aggravating.

Part of this, too, stems from the timing. I retired at the end of October, and there are things I want to do and places I want to go. The uncertainty of not knowing how my body will react to the hormone therapy and salvage radiation makes me hesitant to plunk down $10,000+ for a bucket-list trip to New Zealand now that its borders are beginning to slowly open. Maybe by October (New Zealand’s spring), I’ll know whether I can endure a fourteen-hour flight.

I know that, like the countless men before me, I’ll get past this and adapt accordingly whatever the outcome. What choice do we have? In the interim, I’ll continue to play as my body under treatment allows me to play.

Venting session over. Thanks for listening, and be well.

Month 137 – The Decision

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

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

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

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

RO Call, Tuesday, 29 March

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

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

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

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

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

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

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

PCP Call, Thursday, 31 March 2022

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

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

I thought that was interesting.

Urologist Call, Friday, 1 April 2022

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

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

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

Urologist Office Call, Monday, 4 April 2022

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

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

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

Radiation Oncologist Call, Tuesday, 12 April 2022

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

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

The Decision

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

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

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

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

Summary

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

Wish me luck.

Month 136 – PSA Results & SRT

Well, kicking the can down the road is no longer an option. My PSA shot up like an Apollo Saturn V rocket (yes, I’m dating myself).

Between 5 January 2022 and 11 March 2022, it jumped from 0.26 ng/mL to 0.33 ng/mL. That’s a 27% increase.

Yes, I had the PSA test done about three weeks sooner than I had planned. I had to see the doctor for another issue, and they did full blood work-up for that. They included the PSA test in that battery of tests, too, so I got my results earlier than expected.

Needless to say, I was hoping that this PSA test would have proved the 0.26 ng/mL to be an outlier, or at least to be consistent, but that wasn’t to be. It’s clear that the rate of increase is accelerating and that’s not good.

Based on that, I called UCSD Radiation Oncology this morning to schedule an appointment with the radiation oncologist to discuss starting salvage radiation therapy. It was a tough call to make on a Monday morning.

On a lighter note, the receptionist who took my call was great (answered on the first ring and went straight to her!—no menu tree to button-push your way through). I am not a morning person, and she was far too bright and chipper for a Monday. When I told her that I was ready to schedule radiation, she responded with a cheerful, “That’s great!!” “You said that far too enthusiastically,” I responded with my stomach in knots at having to make the call in the first place. Oh well.

The enthusiasm continued by scheduling the appointment with the doctor and the body mapping session back-to-back on the same day: Friday, 25 March 2022.

Oh. She gave me a homework assignment, too: Try to have an empty rectum and a full bladder for the mapping.

I will admit that part of me wants to press the doctor about having additional imaging done before we start radiation, but I also know that the cancer continues to grow while we’re waiting for the scan and its results. It doesn’t cost anything to ask the question.

Barring any unforeseen circumstances, the next chapter in this journey is about to begin. Wish me luck.

Salvage Radiation Therapy Nomograms

I’ve been playing around with two nomograms that offer predictions on the outcome of salvage radiation therapy (SRT). One if from the Memorial Sloan Kettering Cancer Center (MSKCC) and the other is from the Cleveland Clinic (CC). They are similar in design, but the MSKCC nomogram requires more detailed information to be input by the patient, but the CC nomogram provides a more information at the output.

Summary

Both nomograms gave results that are in the same ballpark, with the CC nomogram being a bit more conservative.

MSKCC said that I would have a 64% chance of being progression-free after 6 years after SRT; CC said that I have a 59% chance of being progression-free after 5 years, and 45% chance of being progression-free at 10 years.

The CC nomogram takes it one step further and estimates a 6% cumulative chance of metastasis at 5 years, and a 12% cumulative chance of metastasis at 10 years.

MSKCC Nomogram

MSKCC Salvage Radiation Therapy Nomogram link: https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

In order to use the MSKCC SRT nomogram, you will first need to calculate your PSA Doubling Time, and they specify that you should use the PSA values obtained in the last twelve months.

MSKCC PSA Doubling Time Calculator link: https://www.mskcc.org/nomograms/prostate/psa_doubling_time

The MSKCC SRT nomogram requires you to provide:

  • Pre-surgery PSA value.
  • Most recent PSA value.
  • PSA Doubling Time.
  • How many months have passed before your PSA reached 2.0 ng/mL or higher. [Interesting note: The field only accepts values between 0 and 72 months and, for me, it took 125 months to cross the 0.2 ng/mL threshold. I’m guessing that may mean that my result will be a bit conservative because I had to plug in 72 months instead of 125.]
  • Your Gleason score.
  • Information about your:
    • Surgical margins.
    • Extracapsular extension.
    • Seminal vesicles.
    • Pelvic lymph nodes.
  • Whether your PSA remained elevated post-surgery.
  • The planned radiation dose. (I left this set at their default value of 65 Gy because I had no idea.)
  • Whether you will be undergoing hormone therapy before or along with radiation. (I checked “No” as there has been no discussion of that so far.)

After plugging all of that information in, here are my results:

Cleveland Clinic Nomogram

Cleveland Clinic Salvage Radiation Therapy nomogram link: https://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

The CC nomogram asks you to provide:

  • Whether you will be receiving SRT alone or with concurrent Androgen Deprivation Therapy.
  • Surgical Gleason score.
  • Extracapsular extension.
  • Surgical margin status.
  • Seminal vesicle invasion.
  • Pre-SRT PSA level.
  • Prostate Bed Radiation Dose. [It was interesting to note that CC defaulted this to a dose greater than or equal to 6600 Gy, but it does give you the option to select “<6600”. To be able to compare the CC nomogram results with the MSKCC results, I changed that to be <6600 Gy so the doses would be similar.]

My results are below (click to enlarge):

Interestingly, if I bump up the radiation dose to >=6600 Gy, then my percentages change to 65% free at 5 years and 53% free at 10 years. That makes sense, but do higher radiation doses translate into higher risk of side effects? I’m guessing so. Something to ask the radiation oncologist on Thursday.

Conclusion

Certainly, those are average to good probabilities, but are they good enough to risk impact to quality of life? I don’t know. Of course, the next step is to dig deeper into the risks of real impact on quality of life after salvage radiation.

I’m thankful to everyone who provided information about their own experiences, either here in comments on my previous posts or in other forums. They’ve been very insightful and give me an understanding of the range of possibilities to expect. But each case is unique, and I have to remember that, should I choose this, my case will be different from everyone else’s.

More to come.

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.

Month 134 – PSA Results

Well, happy freakin’ New Year and Happy Birthday! <Sarcasm font>

My PSA continued its upward climb from 0.22 ng/mL in October to 0.26 ng/mL yesterday.

Additionally, my PSA Doubling Time fell from 45.3 months to 41.5 months. Still not bad, but that’s including all of my PSA values from December 2017 through present. That may be giving me a false sense of security, so I ran the numbers for just the last two years (February 2020-present), and that PSA Doubling Time is 26.6 months.

Memorial Sloan Kettering PSA Doubling Time Calculator

What’s really frustrating is that the 68Ga PSMA-11 PET scan just five weeks ago didn’t see anything. Anywhere.

I’m definitely going to have to mull this one over. At what point do the actual PSA value and PSA doubling time outweigh the PSMA PET scan results of not seeing anything? Or do the scan results prevail? I don’t know.


I hope that your 2022 is off to a better start than mine and, yes, I celebrate my 64th trip around the sun this month.

Be well!

Day 4,054 – PSMA PET Results

They were late. I hate tardiness. 🙂

Again, going into this, I knew that there was a 50-50 shot that the PSMA PET scan would be able to pick up anything at my PSA level, and it appears that I fell into the “we didn’t see anything” category:

ONCOLOGIC FINDINGS:

History of prostate cancer status post prostatectomy with biochemical
recurrence with:
– No focal PSMA-uptake in the prostatectomy bed.
– No PSMA-PET/CT evidence for distant metastasis.

The fact that they didn’t see anything in my prostate bed and elsewhere is both a good and bad thing. Good, in that whatever cancer may be there was so small that the scan couldn’t pick it up. Bad, in that the scan wasn’t sensitive enough to pick things up at my PSA level (0.22 ng/ml).

As a reminder, I’m just looking at the printout of my results online, and am not yet in a conversation with my doctor about the results, so I’m a little reluctant to come to too many conclusions about some other comments in the report without the benefit of his expertise. There was a section labeled:

INDETERMINATE FINDING:

– Focus of intense PSMA-uptake at the left lung lower lobe (fused 4-263)
without CT correlate, likely a PSMA injection thrombus, not favored to
represent metastatic disease.
Attention on follow up.

I added the emphasis above, but it’s something that raises an eyebrow and probably warrants further monitoring or investigation as suggested. That’s something I’ll speak with the doctor about.

Speaking of speaking with the doctor, when I had my appointment in early November, we agreed to schedule a follow-up appointment to go over the scan results in January. However, the first available appointment wasn’t until the first week of February. I’m going to work on moving that earlier, even if it’s a call-in appointment instead of an in-person appointment.


Am I happy with the results? Sort of.

We know from my rising PSA that there’s cancer somewhere in some quantity. While this may be a “false negative,” it’s nice to know that I didn’t light up like the Rockefeller Center Christmas tree. That would have been bad.

Will this cause me to run to the radiation oncologist to start salvage radiation right away based on my PSA alone? Nope. I have another PSA test in January, and if that stays in the 0.21-0.22 range, I’ll be content to continue my monitoring. But if it shoots up drastically, that may cause me to reconsider.

Was it worth $3,300 out-of-pocket? I don’t know. I’m going to get back to you on that one. 🙂

So that’s my PSMA PET scan story, and I’m sticking to it.

If I don’t post again before Christmas, I hope you have a great holiday season!

Be well!

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.