BCR, Eligard, and a long trip... what do you think?

The standard of care when your PSA rises above .2, after having a prostatectomy, is that you have salvage radiation. That’s at least 20 radiation sessions up to 38. That’s a lot of weeks.

Taking Eligard would help at least keep your PSA down and stop the cancer from spreading and growing. Before getting an Eligard shot, you must take Casodex (a pill) for at least two weeks to stop the testosterone flare. If your doctor is not doing this, then you need to find another doctor because yours is not following the standard of care. Doctors that do this really don’t understand how to treat prostate cancer properly.

Eligard is ADT, It is essentially the same drug as Lupron and uses the same underlying drug. It can cause a lot of side effects, I used to get severe hot flashes when I first was put on it. Here’s a list of the side effects, Doctors normally don’t tell their patients about all of these, but you could easily look them up., Some people get a lot of fatigue with it other others don’t, I never did. Due to the side effects on your bones, you are supposed to be taking calcium and vitamin D daily to prevent bone loss. Calcium citrate is the preferred type of calcium.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I run on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

Some people gain a lot of weight on ADT you need to watch your diet to make sure you don’t have that happened to you though during your vacation you may be eating a lot more than usual.

Now the details about having salvage radiation. Eligard will reduce your PSA to undetectable and even if you wait the six months, it will probably take nine months to a year before your PSA actually shows accurate numbers since your testosterone will be quite low. You could also have those hot flashes for that whole time, though not everybody gets them . Another side effect is, you’re going to lose your desire for sex when you’re on Eligard. It may be difficult to get an erection. You might want to take Viagra with you if you want to have sex.

From Ascopubs about what PSA to do salvage radiation. ASCO American Society of clinical oncology
≤0.2 ng/mL:
Starting at this level maximizes disease control and long-term survival. Patients treated at PSA < 0.2 ng/mL achieve higher rates of undetectable post-SRT PSA (56-70%) and improved 5-year progression-free survival (62.7-75%).
Delaying SRT beyond PSA ≥0.25 ng/mL increases mortality risk by ~50%.

0.2–0.5 ng/mL:
Still effective, particularly for patients with low-risk features (e.g., Gleason ≤7, slow PSA doubling time). The Journal of Clinical Oncology recommends SRT before PSA exceeds 0.25 ng/mL to preserve curative potential.

0.5–1.0 ng/mL:
Salvage radiation remains beneficial but may require combining with androgen deprivation therapy (ADT) for higher-risk cases.

This article discusses the above;
https://ascopost.com/news/march-2023/psa-level-at-time-of-salvage-radiation-therapy-after-radical-prostatectomy-and-risk-of-all-cause-mortality/

Thanks for the info.

It's interesting to me that the salvage radiation is recommended before the BCR (of 0.20) has been "officially" breached. I chose the surgical route since the radiation could be a "backup" position in case of BCR. I think I'm done with my urologist and will lean on radiation oncologist from here on out. Also intending to send my case to Mayo, Anderson, and U of Iowa and see if I can get seen at any of them. Thanks for the info on Casodex, I'll look it up and discuss it with RO. Leaning towards cancelling the NZ trip more because of the treatment info than the side effects. With decipher score, quick doubling rate (rapid rise PSA), post surgery pathology of the prostate, I'm worried I don't have the time to "waste".

@larrypt3b
I had Surgery in 2010 at 62 and in 2014 had salvage radiation when my PSA hit .2. I had three reoccurrences after that, I have the genetic problem of BRCA2 and that’s why it keeps coming back. I didn’t find out about that until about five years ago.

They did give me ADT two months before my radiation, That can shrink Any tumors in the area and make it More effective to do the radiation. I was a 4+3, however, and you are a 3+4, so you may not need ADT for radiation. The thing is though your PSA started rising pretty quickly after your surgery and you are a pT3b so they may want to do it anyway.

I noticed you don’t mention having genetic testing. You really should talk to the doctor about getting hereditary, genetic testing. If you have cancer in your family prostate cancer, breast, cancer or pancreatic cancer for starters, it can be due to a genetic issue. There are drugs available only for people that have genetic problems. When the drugs I’m on now stop working. I am going to take one of those drugs.

@jeffmarc
I WAS a 3+4 after biopsy, but that got shifted to 4+3 after surgery. The Radiation Oncologist here strongly suggested ADT had I chosen that instead of surgery 18 months ago so I won't be surprised if he does now. I'm trying to move up my appointment with him. My Urologist is skeptical about the PMSA PET scan bc he thinks it won't see anything. To me, not finding something is reassuring as long as it doesn't mean I can't get another one nearer to RT.
As for my family: We have a history of heart trouble or cancer (I got BOTH; lucky me!). My father died of cancer (unknown type; too advanced) at 62. 30+ years ago. He lasted 10 months and most of them were hard. My aunt (his sister) died of cancer last September (she lasted 18 months start to finish). She had genetic testing done at MD Anderson, but I don't have that data. There are others, but you get the idea. I think I will delve into that further. If nothing else, you can see why I feel like my hair is on fire (urgency) to attend to this cancer as best I can.
I thought the decipher was a genetic test. From what you're saying, its not?
I have heard from so many that: "Prostate cancer is what you die WITH, not what you die FROM". Your story is inspiring; keep the faith!

@jeffmarc

Is your treatment team at Mayo? How hard is it to get in?

@larrypt3b Decipher tests the prostate tissue (either from a biopsy or from a prostatectomy) to determine the aggressiveness of the cancer.

A person can also submit a saliva sample to be tested for many genetic mutations that cause cancers (mine was done by a company called Promise).

I agree with @jeffmarc as being the conventional standard for BCR but you might also want to talk about additional radiation alternatives which are also used, just not by all: Your radiation oncologist may consider hypofractionation or SBRT‑style dosing (Mridian machine or the Electa Unity), if your anatomy and imaging allow safe targeting and the hospital has the technology and experience to deliver it. It may be worth the discussion as it could mean less number of treatments and maybe a more convenient travel schedule for you.

Challenging choices:
I took Orgovyx during my Salvage Radiation Treatment and would suggest inquiring about that ADT medication for your initial treatment.
My I suggest that you need to decide at what place is your comfort level?
Personally, I would strongly consider starting Orgovyx and taking the March cruise, if it is important enough to you.
My primary ADT side effect was fatigue. I described it as a 10 - 20 % power reduction. On a cruise, you can engage in off boat activities or rest, depending how you feel.
And I, again personally only, would then begin the radiation treatment portion of SRT upon returning.
Also, I had the 37 txs/8 week regimen, for which I am grateful for the lower radiation per treatment. Other men have had shorter courses of radiation with success.
I would be uncomfortable adding the New Zealand trip because of its length and I would want to move ahead with radiation (which is the tx that actually "kills" the cancer cells).
I started to feel more like myself about 4 - 6 mos after SRT radiation (and I was also off ADT) and traveled to France for 2 weeks on a self managed trip.
These are just my thoughts and I return to the Q: What is your comfort level regarding when to begin treatment.
Best wishes for success.

Thanks for the comments! Being a "newbie" to all this, I'm trying to train up my knowledge base to make better decisions and y'all are helping; gratitude!
Trying to move up consult with RO to asap; ultimate decision about longer NZ trip after that (searching for good reasons not to go; if I can't find any, then I can go with more comfort). 2 week cruise is more probable.
Prior to deciding on RARP, the RO proposed some options for RT. These included inserting radioactive discs(?) around the prostate and inserting a probe (tube) into my body and then sending a higher dosage isotope down the tube to radiate the area. This would be done fewer times. Not sure if these are still possible after RARP.

@larrypt3b - off the top of my head, that sounds like an initial radiation treatment for the prostate.
I imagine SRT more as a " carpet bombing" of the entire prostate region together with the pelvic lymph nodes to try and irradicate the cells that escaped or migrated from the prostate.
I believe that there are treatment regimens from 5 to 37 sessions, depending upon the level of radiation applied.
Different ROs seem to have different protocols for tx, and you may want a 2d RO consult to hear different options.
None of this is easy, so best wishes in your decision making.