Newbie Here, Gleason 9+

Not quite sure that I'm posting correctly, but here goes. Hope someone can read this as I press the button and send it into the ether.

I had my first Eligard injection about two months ago and start my nine weeks of radiation treatments tomorrow. Lucky me, I had a perfect 10 on one of the biopsy cores.

I'm mostly feeling numb at the moment, but trying to stay positive and going to the gym daily. I do have a few questions:
1. It's been almost two months, but I'm not feeling anything regarding the Eligard effects. Should I be concerned?
2. Any tips on getting through the nine weeks of radiation treatments? Does everyone become fatigued?
How likely is the side effect of incontinence?


DX Dec 2017 at Age 68
PSA at DX 6.5
Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35%
MRI and CT no evidence of metastases
ADT Eligard, quarterly, start Feb 2018
3-27-18 SRT Virginia Hospital Center

Welcome to HW, sorry you need to be here.

It is a kick in the head to find yourself with this problem. The emotional shock takes some time to recover from. Good to hear you've got a treatment plan in place.

The Eligard could take some time to be totally effective. You might ask the doc, but I don't think it's a big concern at the moment.

The RT is an endurance test. The only way through is to just do it. Exercise as you can. Do things that you enjoy and keep your spirits up (hobby, movies, books, go places, see friends, etc). Not everyone gets hit with fatigue - exercise seems to be key to avoiding that. Walking is really good, more is better.

Incontinence generally isn't a problem with RT like it is with surgery, but you can get a bit of urgency - when you need to go, you need to go now. Bowel issues are more common, but everyone is different so you may or may not get them. Just one piece of advise here - don't trust a fart, might be more than you think.

Hang in there, ask all the questions you have - we're here most days.
Andrew

The effectiveness of the Eligard injection is judged by how well your testosterone has been shut down, and reduced your PSA.

Here's an article about fatigue from long-term radiation. The bottom line is - exercise more - do not "take it easy."
/pcnrv.blogspot.com/2017/11/radiation-induced-fatigue.html

BTW - I assume you meant "IMRT" and not "SRT" (salvage radiation therapy) in your signature.

Hi Explorer
Very sorry to see you on this board. My doc presecribed me some anti-depression medication that I found really beneficial, I would strongly recommend you speak to your doc to get you through this initial phase. You can always wean yourself out of it later.
Keep up the good spirits!

Hi Explorer, sorry you have to be here. Having a GS 10 is not great, but with a low PSA and no signs of it leaving the Prostate yet, you may do well with your treatment path. I wish you lots of success on your journey. Hang in there. -JR

Good counsel, Explorer, and thanks to Tall Allen for the link to issues with fatigue.

Hey Explorer, I hope your first radiation therapy session went well. (Suggest full bladder, empty rectum, every time). At my first one, as the machine was being indexed just before delivery started, I had a brief fantasy of jumping off the table and running out of the room! It will become quite routine after a while. Did you notice what x-ray machine they had? Mine was a Varian Trilogy with Rapidarc. It was very quick, each session about 12 minutes, and barely two minutes to deliver the treatment.

I've added you to our G9/10 Crew Roster on this thread, on the illustrious G10 list. We don't see a lot of G10, just a few per year. about the same as the G9 5+4 rate. Having cores with either all or mostly type 5 cells is a similar risk. I always strove for top scores on tests, but this is one that was not at all desirable! The roster has forum names, date of diagnosis, and a link to their first post:
The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

I like to call it the least favorite chapter of the club no one wants to join! It's meant as a gathering place for those of us facing this diagnosis, since our concerns tend to be focused around the most aggressive treatment plans and outcomes. You may find it interesting to peruse the posts there.

The other guys have some good suggestions. Stay with us here; it's a bunch of helpful lay people. Whatever's going on it's likely someone here can chime in with first-hand experience.

Thanks, everyone.

Day One of radiation treatment was a surprise—a pleasant one. I imagined a sleek, futuristic version of Dr. Frankenstein’s metal table with noisy blasts of electricity and high-voltage arcs and sparkles. Wrong, of course. There were only the recessed ceiling lights, a soft hum and a napkin to hide my privates. After I stretched out, the tech announced that the doc wanted a few X-rays before the radiation. The white arms of the machine moved above me and left and right. When the tech returned a few minutes later, I asked her when the treatment would start. She told me I was done. I hadn’t turned into Frankenstein’s monster or a eunuch. At least not yet. 43 more napkins to go.

A few concerns. After eight weeks I’m not having any effects of the Eligard. I will talk to the RO today about a blood test to check testosterone levels. Also how much daily water is enough? A half gallon?

DX Dec 2017 at Age 68
PSA at DX 6.5, Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35%
MRI and CT no evidence of metastases
ADT Eligard, quarterly, start Feb 2018
3-27-18 IMRT Virginia Hospital Center
CLL in remission after targeted chemo

Post Edited (Explorer54) : 3/28/2018 9:57:23 AM (GMT-6)

Explorer54...you have the mindset to keep the boogie man away...you want and need to explore...do so in the spirit that you trust...not the one that you fear...get back to the tao...empathize with the grand and the small that engulfs you daily...you know what I'm saying...believe it....there is so much happening in your life right now...embrace it...every thought you have had{yea or ney}...every action taken or not...resides in you right now...now...and again...now...past and future...scolds and praises...imposters both...the best is yet to come...just wanted to let you there are others who know this as well...even if can't commit or admit...it wells up in us all...it depth is fathomless...as it should be...it is....regards logo

Explorer54 said...
... Also how much daily water is enough? A half gallon?

My system was reliable, recommended by someone else. At 2 hours before the appointment time, stop drinking anything at all. Then, roughly 30 minutes before the appointment, drink a specific amount of water. For me it was right at 15 ounces. That two step procedure gave me just the right full bladder at the time of the treatment. Try more or less to get the right fullness.

It got difficult when there was a delay, as the pressure kept growing until by one hour late it was almost intolerable.

Thanks, guys. I'm getting the routine down. The water, too. I'm feeling philosophical today, so excuse me.

The sky went dark on Day Three of radiation treatment. Well, one-quarter of it. Above the Calypso machine are four back-lighted photos of blue sky and happy clouds. Today the lights had dimmed. Some bulbs must have burned out, leaving a black hole in the right corner of the ceiling.

Funny, I hadn’t noticed the blue sky or the happy clouds before. In fact, I had remembered the ceiling having recessed lights. That must have been the PET scan room, or the CT room, or even the many blood-letting rooms I’ve waited in over the past months.

Today on my back, I watched the dark quadrant above. Sorrowful like me. Thunderclouds. Angry like me. Do the technicians even notice that one quarter of the ceiling is black? If they’re ignoring something as basic as the ceiling lights, can I trust them to pinpoint my prostate?

Take a deep breath, I told myself. darn, I couldn’t take a deep breath, because I had to lie still on the table. I imagined a deep breath. I focused on my stillness. I traced the shape of the clouds. I counted the shades of blue sky. I turned the buzz of the machine into bumblebees. The soft hum of the fans into the sound of the surf. Into music. Despite everything, there will be music. And blue sky.

So, guys, maybe it takes a thundercloud to make us appreciate the sky. Maybe it takes a black hole to lead us to the light.

-------------------------------------------------
DX Dec 2017 at Age 68
PSA at DX 6.5, Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35%
MRI and CT no evidence of metastases
ADT Eligard, quarterly, start Feb 2018
3-26-18 IMRT Virginia Hospital Center
CLL in remission (two years now) after targeted chemo

be careful, IMRT turned me into a poet. I sense poetic danger in your observations ...

Keep it commin' explorer.....

If you only knew....or....maybe you do