New member info - Gleason 7 - making decisions

I suspect the calcium and vitamin D will help re your bone density. My doc had me on Prolia (an osteoporosis drug) during my entire ADT. I had a bone density scan both before and after ADT and I did fine in that regard.

I also echo JNF and Halbert's comments about keeping the bourbon. Good luck with the radiation!

Thought I'd post an update:
I had my fiducials placed last week, the procedure was not any worse than a biopsy and a lot quicker. Glad that that should be the last time I get poked in the prostate! I took a couple of prescribed Ativan beforehand, it helped take the edge off.
Yesterday was one month on Lupron. So far, my side effects have been limited to hot flashes, probably about a dozen a day. They're not too disruptive, except for when they wake me up at night.
I've been weighing myself each morning, so far no weight gain. No real fatigue or lack of motivation to report, I'm still clocking in full days at work and ready to get in there every morning.
I'm going in for my 2nd 7.5mg injection of Lupron tomorrow. Got a $441 bill for the first one, good thing that I'm almost about to meet my deductible!

I had my CT and MRI simulation yesterday, and met the RO in person for the first time. Young guy, very focused and intense, but in a good way, the kind of way that makes you think "I'm glad this guy is my RO!"

I had the CT after our meeting, and was REALLY ready to empty my bladder by that time. I had been drinking lots of water to stay hydrated that morning after doing the enema prep, and then added on 32oz of water right before my 9am appointment with the doctor, which ended at 9:40. The CT techs worked fast, and got me off the table as soon as they could. After the bathroom break, they gave me 3 pin dot tattoos. I had some time before the MRI appointment so I asked the CT tech if she could show me the Varian TruBeam machine. Turns out that Kaiser has FOUR of them there, and one was open. It's one impressive piece of machinery, and from what she told me, they are constantly in use. On the way out, I noticed the 10 inch thick door - yikes!
The MRI was next, it took 40 minutes, but no big deal.

The hot flashes are becoming a bother, it's been hot here in Portland so that's not helping. I'm getting about 1 or 2 an hour, and have learned to not let them interrupt my sleep too much when they wake me up. But I keep thinking about something Cyclone-ISU posted here: "the hot flashes are what's telling you that the medicine is working".
That simple idea has really helped me a lot. Instead of seeing them as something bad, you view them as beneficial instead. Brilliant.

Radiation starts in two weeks!

Bob, sounds like things are going fine...this will soon be a distant memory.

Jim

Good luck Bob.

Thanks for the encouragement and the heads up about what I may expect during treatment, I'll be sure to post updates in a couple of weeks once the SBRT is underway! This forum has been a big help to me.

Hello PDX-Bob ~

I had members here who encouraged me greatly in the day before my 45 radiation treatments.

I needed to hear these words: "You'll find your way through it. Take one day at a time. The FINISH LINE awaits you! We'll be cheering you on!"

So their words to me, when I needed them most, I now share with you.

Trust me when I say, I will be cheering for you, the loudest of all, when YOU reach the finish line.

After the test run and first treatment, all the rest follow the same pattern.

You'll have the drill memorized in a couple of days, and the protocol will become instinctual.

To help prepare for your radiation treatments, I just sent the thread entitled "My Experience With Radiation Beam Therapy" to the top of the feed this weekend.

You will see it today, towards the top of your screen.

You're going to find insightful, helpful strategies to navigate through treatments ---- AND mitigate side effects. Nothing better than that ...

You might want to print off the thread, then highlight and underline your favorite strategies, tips, and advice.

The best tip is the one that helps YOU the most.

Even better? The radiation treatment tips YOU discover, in time, and share with all of us!

Check out that thread --- and special note of thanks to our member TempFlightRestriction for getting that thread kicked off.

Consider it your "playbook" --- handed to you by team "coaches" --- the weekend before a new season begins.

It's an active thread, so feel free to add onto it, in time! It's written in "one brother to another brother" style ... helpful, insightful ...

One of my favorite tips, during treatments --- ask the radiation techs to play your favorite music choices during the treatment time.

Two songs, each day, and then I was "outta' there" and on my way!

Remember --- I will be the one cheering the loudest, when you reach the finish line!

Handshake, support, encouragement - from across the miles,
CYCLONE ~ # Iowa State University

Hey Bob - It sounds as though you have a good team and you're in a good space. 3 of the guys in my local support group had SBRT and they're all doing well, one in fact is 10 years out and has never had ED or incontinence, the other 2 ditto.

Good luck. You'll breeze through it!
David

Hello PDX-Bob,

I'm thankful the radiation thread was helpful to you.

That's the power of comrades here, working together, writing to share their first-hand experiences on a common thread.

In time, once your radiation treatments begin, please add your experiences to the thread started by our comrade TempFlightRestriction. Each fellow's experience helps "blaze the trail" for the next fellow.

It's powerful, realizing a treatment experience, even when it's arduous, can help another, when it's shared here.

In addition to your upcoming radiation treatments, you mentioned that your ADT shots are resulting in hot flashes, at home and at work.

I thought I would share a few strategies that have helped me, in hopes that one of these ideas might work for you.

Here we go ...

I have been on continuous ADT shots for seven years, since I was diagnosed. Over time, that has included LUPRON, FIRMAGON, and ZOLADEX.

For any fellow on ADT shots, ask your doctor to order an occasional testosterone test, when you're there for your usual labs, to ensure it's knocking that testosterone way down, to keep PSA controlled.

Many doctors overlook this, and you want to ensure your ADT shot is working to its best advantage. This led to greater PSA control for me, by eventually switching over to ZOLADEX, which eliminated spikes and flares in my PSA levels.

So, here's some strategies to deal with those pesky hot flashes ... a few things I have discovered these past seven years ...

Keep ice water on hand, at home, and at work. Water bottles work well --- and some fellows keep ice water on their nightstand, if night sweats are an issue. You can fill a water bottle partially full, freeze it solid, then add a bit of water ... for bedtime or work. Get a few ready in the freezer.

I know a few ADT fellows who keep a frozen medical ice pack in the freezer, as their "go to" solution for an occasional hot flash. Instant comfort.

I had a new ceiling fan installed in my living room and bedroom. Lifesaver! A small room fan will work easily, too. Very affordable!

If you have an office at work, you can put a small fan in the corner of your office. Bring some of those frozen water bottles, too! I drink cold tea, too, for sake of variety.

For bedtime, cool cotton sheets and cotton pillowcases help --- along with that room fan or ceiling fan. One more idea --- I put two pillowcases on every pillow, to protect the pillows from night sweats. Launder often.

For personal comfort --- cotton briefs or boxer shorts. Nights and weekends, I wear cotton athletic shorts, track pants, and athletic cotton t-shirts.

For social events, restaurants, and get togethers --- cotton khacki pants, athletic t-shirt, with a dressy cotton "wrinkle free" Oxford shirt over the t-shirt --- untucked, sleeves rolled, and mostly unbuttoned.

Comfortable, cool, classy, casual ... and it works well for most social events.

A central theme here ... cotton clothing ... it helps. Cotton's natural "breathability" feature ... ahhhh ...

Hope one of these ideas helps you. Sometimes one shared idea will spark an even better one.

My favorite idea? The ceiling fan, or room fan ... easy, affordable ...

But the BEST idea, of all? The one that helps YOU the very most!

Handshake, from across the miles, from "one brother to another" ~

CYCLONE ~~~ # Iowa State University

Hi Bob, if you have made a decision about which total dose to go with, fine. If you are undecided, you might want to do some research and ask your docs whether knowing the metastasis-risk of your tumor could help in this decision.

A Decipher test on your biopsied tissue would give you a risk score and category (low, average, or high) of your cancer metastasizing (assuming recurrence after treatment). The Decipher test has been clinically validated, but I would note that the result when done on biopsied tissue matches that done (for the same patient) on RP tissue (just) 70% of the time. In other words, some men have a biopsy category that would be "upgraded" to intermediate or high about 30% of the time. This occurs because a biopsy samples a very small amount of tissue and can miss the worst-category lesion -- about a third of men have their Gleason score upgraded after surgery for this same reason.

The Decipher test has been clinically validated. Also of possible utility would be the GRID report that you can request accompany your Decipher report. The data in the GRID report has not been clinically validated and is "for research purposes only." However, it contains a a score (0-100) for how your tumor may response to RT (based on its RNA). This might be of use to you and your docs as part of a "tiebreaker" if you can't decide between the two total doses. A a lower (poorer response) score could weigh in favor of the higher dosage, and vice versa. You and/or your doc can also call the company (Decipher Biosciences) to discuss the possible benefit of Decipher and GRID in choosing between two primary-RT dosages.

There are other genomic tests (e.g. OncotypeDx, Prolaris) besides Decipher that can be done on biopsied tissue. You may want to research the others to see the types of information they provide -- they are all slightly different.

Aside from your RT dosage decision, a genomic test can provide information that may be useful in the future.

Just some thoughts -- all the best to you!

Djin

Bob, A link I found that may be of some interest.

https://prostatecancerinfolink.net/2019/01/09/sbrt-the-optimal-dose/

Not sure that there is a right answer nor is there a wrong decision here. Good luck.

Kaiser is huge so approved protocol is probably everything with them. Your doctor cannot vary from the protocol so you would be relying on something be formalized in the future. Might be tough to accept that when you want this to be over by then.

I had my first SBRT treatment today, I've been on the low fiber diet for a week now, and did the "empty bowel, full bladder treatment" before my appointment.
The technicians estimated that my time on the "couch" would be between 5 and 10 minutes, but after 15 minutes I said aloud "Guys, how much longer?" My RO came in and said that my bladder was actually too full, and it was moving one of the fiducials around, making it hard to administer the radiation.
I was MORE than ready to hit the bathroom, and at their suggestion I emptied my bladder about halfway. Back on the couch, I went for another 10 minutes and got the same outcome: too much bladder movement, empty it again!
The 3rd try was the charm and they finished up pretty quickly.
The written protocol was to drink 28-32oz of water starting 45 minutes before the treatment starts. My next appointment is in 2 days, we've agreed to lower that amount to 12oz! On the bright side, they said that my ability to hold my bladder was impressive.
So other than a wicked urge to urinate this morning, everything's going as planned. Hopefully that will be non-issue going forward.