ADT and SRT Journey Part 4

It’s go time. My SRT setup and first treatment is at 9pm tomorrow night. This week will pretty much suck, as they couldn’t get me in for morning appointments. So I’m all over the map. Monday 9Pm, tues 3:30 pm Wednesday 7:20 pm, etc. then starting with treatment number 7, it’s 7:20am each morning.

Things I wonder about...

How am I going to be able to control whether I can empty my bowels before each treatment. Especially at 9pm and 7:20 each morning.

When the hell am I going to see my RO? I haven’t seen him since before I made my decision to do adt and SRT. Will I be seeing him (Zelefsky at MSKCC) each week, or the radiation nurse?

Can I eat before my treatments this week with the crazy schedule? Tomorrow before my 9pm treatment I have a 6:30pm appt for my second Firmagon shot, and labwork. So I’ve got time to kill.

Are the effects of the Firmagon, cumulative? My only SE’s the first m0nth are hot flashes(not terrible) and about a 6 pound weight gain (although that’s partly a result of crappy eating habits over the holidays.) should I expect things to get worse?

What’s the common follow up protocol. When your done with SRT, how soon/how often do you need to go in for follow up? Im finishing SRT Nov 16th, and plan to head down to Florida for the winter on Dec 1st. If they can’t refer me to someone down there or insist all labs (and the last two Firmagon monthly shots) done at their lab (which I know they prefer), then I guess I’ll hve to fly up for a day or two, occasionally, ugh.

I wonder about lots of other things, but they are things that are just without answers for now.

I have to admit, even though I understand rom the posts here that the first couple of weeks of SRT is usually a non event, the tension has been building a bit over the last day or two.

Generally when you finish and kind of RT, the RO leaves the picture and you followup with your URO/MO/PCP. ROs tend to be just treatment dudes.

When I had my last IMRT treatment the told me that everything looked good and he was discharging me back to my URO for the followup PSA tests

Thanks for the responses. Interesting comments on the follow up. My Uro also didn’t think I should be. Doing SRT just yet, but he ultimately said yes, due to my mindset. At my last visit, he said once I’m done, to return to him in 2 years. I think.

I’ll see what the RO says.

Prato, here’s my MSKCC experience:
Treatments varied also to accommodate my travel schedule, generally 1 pm Monday and 9 am other days, but they moved around an hour or so also
Eating before treatment is fine
Saw RO once a week, immediately after treatment, except that because he’s also organizing their new office in Bergen, NJ sometimes it was another RO — very young, maybe a resident. Saw nurse before doctor — questions about SEs plus general chitchat because I wasn’t having significant issues. The nurses wanted to know about bleeding, fatigue, urgency, nocturia, general feeling, wrote it down, gave report to doctor who went over it with me.
First follow up will be early December, 3 months after treatment ended, blood work and see nurse practitioner.
Hope that helps.

One treatment down, 39 to go. First one, was a non event.

Did bloodwork before the treatment, among other things, PSA is down from .08 to <.05 (lowest detectable at MSKCC lab is .05). So I guess I’m back in the zero club, even though it’s due to the one month of ADT , so artificial, for now

Test was just a few hours ago, so haven’t gotten Testosterone back yet. But I’m sure it’s pretty low based on my PSA, and hot flashes.

Andrew thanks for the pass. And re “having my own private summer” lololol love that. Gonna use it. Since it’s almost October, I’ll use Indian summer.

Prato... The protocol at the mayo was a meeting every Wednesday or Thursday with Ro's nurse, sometimes the NP, sometimes the RO and sometimes the PA. A little discussion about how it was going but mainly talked about fat tire riding, family and how cold it was in northern mn!! lol. I elected to stay with my RO after radiation they are the ones that administer the Lupron shot. The urologist-surgeon has done his job so unless I develop problems with urinary issues really no reason to go back to him if I become detectable it would be the RO that would order the necessary scans and tests. I went back the first time after 3 months and then now it is every 6 months and get my Lupron shot at the same time. The weekly meeting sounds like pretty much protocol at least with all the guys here on this thread. Now after having a couple of treatments you can see why we told you not to get your shorts in a bundle mmmm might want them in a bundle toward the end of treatment and a close bathroom!! LOL!! naw just giving ya a hard time !! it will be alright

Larry

Testosterone result came back, at 5 ng/dl down from 322 a month ago. No wonder I feel like garbage. It was accompanied by this comment....
“For Testosterone values less than 20 ng/dL by immunoassay a more accurate and sensitive Mass Spectrometric method is used. This test was developed and its performance characteristics determined by the MSKCC Department of Laboratory Medicine. It has not been cleared or approved by the U.S. Food and Drug Administration. The FDA has determined that such clearance or approval is not necessary. This test is for clinical purposes”

Had my first weekly meeting with the RO today, the day of my second treatment. Waste of time. First PA comes in, asks if I’m having urination issues, bowel issues, mentions the results of my ALT liver enzyme test as high and it needs to be kept an eye on. Asks me if I drink alcohol (I don’t aside from an occasional drink when I go out to dinner, but almost never). You know it’s my second day of treatment. Why are you asking me about urinary issues?

Then the RO Comes in. First time I’ve met him, my RO is on vacation. this guy really had nothing to say and seemed totally disinterested.

They had me drinking one 8 ounce cup of water before treatment. That had my bladder 2/3 full yesterday, which the tech said is fine but they don’t want it to be less full than that. So today they upped me to 1 1/4 cups. They said it was a good result.

Hey -- been a while..

First, SkyPilot -- thanks again for setting up this thread.. I always feel good when I check in after a month of idle, and the thread is still going

@Prato -- hey good luck man on all the procedures... like everyone else has said ... it gets boring. Just remember to try and flush yourself out before the session

I get my second PSA since my procedure --- the first one since my HT has worn off in a few days ... starting to get nervous..

Zzarth

Zzarth.. Good to hear from you sounds like things are going good here's to another undetectable #! It will be interesting how quickly you get your testosterone level back up to normal. I'll be starting my second year on Lupron at the end of the month. Sometimes the SE's suck but spending time with my family, friends, and even my puppy dog make them pretty easy to live with! I seem to be getting over some of the effects of the radiation for which I'm thankful. There seems to be lots of guys starting down this journey of srt and adt so I hope we can continue to be a source of comfort, support, a little humor, and maybe a little advice sometimes although we now have a moderator on board we gotta be a little careful!! LOL naw just kidding wish we didn't have to have Prato join our group but now that he has wishing for him the best in his journey.

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Ken... My team at the mayo want me on calcium with citrate they also want me on vitamin d they said that because I was going to be on Lupron for a minimum of 2 yrs is why they want me on it also it will have to have another bone density test to see how bad Lupron is beating me up. I'm really poor at taking the calcium and I'm outside so much haven't really worried about vitamin d maybe I should since I live up here in northern MN. I'm good at taking my multivitamin and daily aspirin but that's it. Have they let you know how long they want you on adt?

Larry

Larry, yes, they want me on ADT for 6 months, so 4 1/2 months more. I'm wondering if its really necessary for a short course of ADT. I got the ok from my cardiologist today, but i am going to wait until next week when i meet with my RO, rather than act on the advice of a nurse. She may not know that i am on a 6 month course.