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Update - School Psych unfortunately back to the fight

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Posted 1/12/2022 4:37 PM (GMT 0)
Hello Bill and it's encouraging to get consensus within your medical team, which as I recall wasn't always the case during your initial treatment. Yes, ADT won't be fun, but hopefully having been through that drill once it will be a bit easier the second time around. Keep us posted on how this rolls out for you. Best from So Cal.
Posted 1/12/2022 9:49 PM (GMT 0)
Thank for the support guys. More encouraging news, Dr. Lam responded to my email and indicated that Erleada was perfectly fine to use instead of Zytiga so the ADT part is settled.

Also, my CC RO's office called today to set up an appointment for next week to discuss the radiation part of the equation.

Still no date set for the Lupron as it is going through the insurance preapproval process first. I'll update as I have more news.
Posted 1/15/2022 7:17 AM (GMT 0)
Hi Bill… haven’t been on for awhile, so just catching up. Sorry to hear the recurrence news but it sounds like you are getting a jump on them the sink, again! If you ever head back this way let me know and we can catch up. Take care my friend. -JR
Posted 1/15/2022 4:39 PM (GMT 0)
Hey JR, great to hear from you. Thank you very much, I appreciate it. I hope things are going well for you and you have been able to travel a bit despite the craziness going on in the world/travel sector. Definitely was not ready to start up treatment again, but at least I have a better idea of what to expect with ADT this time around.
Posted 1/15/2022 9:03 PM (GMT 0)
Hi Bill... Some travel (so I don't shrivel and die!). But we do it as safe as we can. ADT, not fun. I wish you well on this round of the journey. Take care! -JR
Posted 1/21/2022 12:52 AM (GMT 0)
Just another update. I met with my CC RO today and he told me that he is 100% on board with SBRT to each of the mets found with the PMSA scan. On the PSMA scan topic he, like my other doctors, indicated that the mets are so small that it likely would have been a long time before they would have ever been found on traditional scans prior to the PSMA. I did have whole pelvis radiation with him the first time around, but he feels confident that it won't be an issue for me. He is starting the insurance paperwork today. I feel better now that there is a solid plan in place and the ball is rolling.
Posted 1/21/2022 2:28 AM (GMT 0)
I thought my ears were burning a bit.

Just crazy all the recent advancements in treatment! And yes, my RO, and my MO both agreed that I could be on Zytiga only, instead of Zytiga & Lupron. I am also only on 500mg of Zytiga daily instead of the more typical 1000mg/day, although I am instructed to take it with food, which somehow makes it stronger ,I guess.

I had the PSMA scan as well and it showed a hot lymph node that did not show up in my traditional pre-surgery scans. I wish I would have had the PSMA scan BEFORE surgery, because if I had that knowledge, I would have skipped the darn RALP and gone straight to RT. There are so many things I would have done differently if I could have seen into the future. So many things. I was so stupid about my 'so-called' AS on top of everything else. I almost want to sue that doctor!!!

Ayway, does anyone think it is unreasonable for me to hope for the Lu177 treatments (if needed) to get me off the ADT train? I really do not like what the Zytiga does to my body, and I would love to see a way out of it before the recommended 2 years.

Peace on all y'all!

Geetar (Mic)
Posted 1/21/2022 3:58 AM (GMT 0)
GeetarMan,

Probably too early to tell since it seems to take a while for the Lupron effects to diminish, but it will be interesting to hear if you actually feel better with Zytiga only than with Lupron and Zytiga. I was on Lupron for about 1 1/2 years before starting the Zytiga and didn't really notice much of a difference when Zytiga was added. Although they said this time I could skip the Lupron I figured if I was taking one, I might as well do both thinking the SEs would be about the same. Please continue to let us know how it goes.
Posted 1/23/2022 4:46 PM (GMT 0)
Glad to hear all the docs are aligned on your plan, including the RO! I hope this just turns into a bump in your journey. Good luck and keep us posted on how everything goes!
Posted 2/20/2022 7:19 PM (GMT 0)

Hello, SCHOOLPSYCH ~~~

Our paths have crossed for years, with common threads in our treatment story, over time.

I always follow your posts, and you have been in my daily thoughts, as you consider and plan for a new course of radiation treatments.

I just gave a thread a BOOST a moment ago --- started by TempFlightRestriction.


It's a collective thread about RADIATION treatments, that will help you navigate through your planned series of radiation treatments.

It's written in "one brother to another" style --- and perhaps best of all --- it contains a wealth of strategies that can be used to lessen and mitigate side effects, during your series of radiation treatments.

Read through it --- print it off --- get out your yellow highlighter pen --- and highlight the tips and strategies that resonate the most with you.

Along the way, through your treatments, jot a few notes about your own experiences --- and any helpful things you learn along the way - and add them onto TempFlightRestriction's thread, for the good of the cause.

One of the shining hallmarks of this site is to "help the next fellow" --- down the road --- and I know that is a personal mantra that you live by, SCHOOLPSYCH.

Going forward --- I am going to send positive "vibes" --- uplifting "ju-ju" - and supportive thoughts your way, all through your course of radiation treatments, my compadre.

I'm here to support you & I will start the treatment countdown for you.

The days will go by --- the last treatment day will be circled on your calendar - as it once was on mine when I went through radiation treatments.

Then ---you'll be ringing that bell like I did on that last day of treatments, good sir!

One treatment at a time - and once you have a couple of treatments knocked out, the rest will follow the same pattern & you will get those treatments knocked out - one at a time!

The weekends provide a nice respite ----- and summer will await you, afterwards!

Camaraderie, fellowship, friendship --- from "one brother to another" ~
CYCLONE - # Iowa State University
Posted 2/22/2022 12:03 AM (GMT 0)
Thank you, Cyclone. I actually start my first dose of SBRT tomorrow. It was a long road getting it approved by my insurance company but my RO jumped through the hoops and appealed with even more information every time they denied it (4 times!). Just another example of how important it is to have a medical team that will go to bat for you. I know after the 2nd or 3rd denial my doctor could have just given me the bad news that it wasn't going to go through. Anyway, good news is that I'm set, start tomorrow, and am very thankful to be able to get the treatment covered.

Since it is SBRT it won't be quite the long slog of radiation treatment times. However, I am looking through the thread you bumped to catch up on experiences others have had.

Thank you and all here for the support!
Posted 2/22/2022 1:33 PM (GMT 0)

Sending my supportive thoughts, SCHOOLPSYCH, as your radiation treatments begin today!

Once you get through the first couple of treatments, the rest follow the same pattern and protocol, and become routine.

Like you, both of us working in education, I had to juggle my school schedule, and get to the treatment center, right after school.

I had a water bottle for drinking the proper amount of water before I reached the treatment center, as a full bladder was required, in my case, for my radiation treatments.

Bringing a gym bag to school allowed me to quickly change into track pants (no zippers allowed, no coins or keys allowed in your pockets) plus a t-shirt and tennis shoes --- and I drove straight over to the treatment center immediately after school.

I had 45 treatments, so this plan allowed me to not miss time with my students - and to preserve my bank of leave time.

Weekends are a welcomed reprieve, my compadre!

My radiologist emphasized thr importance of staying active during treatments. He even rode his bike to work, on certain days, to underscore the importance of staying ACTIVE.

He shared something with me that I will NEVER forget. He said, "The day you don't feel like going on your daily walk, is the VERY day you need to get out there and walk the most."

WOW! Life lesson learned, right there! I will never forget his words! Some of the best advice I ever heard! Simple - and POWERFUL!

He said even if it's only a 20-minute walk in the neighborhood, get out there and walk a bit. It helps boost energy and mitigate fatigue.

Luckily for me, one of my favorite smaller lakes with a nice walking trail is located near the treatment center, so I went on a walk after every treatment, then headed home.

The best tips and strategies will be thrilled ones that YOU discover and share with us here, SCHOOLPSYCH.

As the treatments go by, be sure to jot down a few pointers and add them to TempFlightRestriction's thread about radiation treatments, when time allows.

Above all else --- thinking of you today, as your treatments begin!

SUPPORT & ENCOURAGEMENT --- you've got mine, SCHOOLPSYCH!

Camaraderie, brotherhood, fellowship ~
CYCLONE ~ # Iowa State University
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