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ADT and SRT Journey Part 5

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Posted 12/12/2018 5:13 PM (GMT 0)
Thanks for the reply. I am grateful that my PSA is finally undetectable, but know I need to continuing monitoring. HT really wiped me out, and I feel like I lost part of this year due to fatigue and brain fog (and I only did 6 months). Looking forward to improved energy in 2019. Best wishes to everyone.

I should add that this site provided valuable information used in making a (personal) decision for early SRT, while my surgeon was more of a wait and see guy. I appreciate his position, but it seemed risky as a 'young' T3b patient.
Posted 12/13/2018 9:15 AM (GMT 0)
Wow can't believe it ! It's been over a year ago on 12-9-17 that I started this thread now 5 parts later and many hundreds of posts probably is almost right at the top for most busiest thread. And for this the thanks goes out to all the great guys that have participated and told their stories and offered some advice but mostly have been there to offer support and friendship!!!!!! It's been very interesting how ADT and SRT affect everybody in different ways. But also how fast these treatments seem to just fly by? Well at least the SRT. A year ago today I got my tatoo's! LOL I personally have a lot to be thankful for a yr of undetectable psa's. One more Lupron shot in April and hopefully I can put this behind me, actually I think about it less every day. I hope this can be the same for all you guys and want to wish everyone a Merry Christmas and Happy New Year!!
Posted 12/13/2018 2:58 PM (GMT 0)

Somebody said...
Some anxiety on PSA & T level blood draw today. Was on Hormones for about two years.

last 3 month Lupron injection was end of May 2018 so could be T level is rising & will see if PSA still undetectable. Praying for this to be so!!

Results are in:
PSA still undetectable <.1
Total T = 7 ng/dL
Free T = 0.6 pg/mL
First time I had free testosterone test. Not sure exactly what it signifies, since it is a percentage of total T?

Sure is taking a long time for my T to come back (last 3 mos lupron end of May).

Happy PSA is still undetectable, but would be happier to know for sure SRT worked and not undetectable because of HMT.
Bobby Mac
Posted 12/13/2018 4:14 PM (GMT 0)
Congratulations on maintaining the undetectable PSA Bobbie, and I'm right with you on wondering when the HT will wear off and T start to recover. Only then will we know whether the SRT actually did its job. My last 6-mo shot was last January, and hopefully I will know more after my next PSA&T next month. No sign of T recovery so far.

Keep your head above water. We're all pulling for ya!
Posted 12/14/2018 1:57 PM (GMT 0)
Bobby I get how you feel, PSA being undetectable would be more meaningful had the T recovered.
But I guess we take what we can get to run with the PSA and enjoyed in the moment.

The last T was measured at four. And my last three months Lupron shot was a month ago so I’ll do my first test in May. And I’ll take an undetectable PSA no matter what the T is and be happy with it
Posted 12/14/2018 9:20 PM (GMT 0)
Pratoman -

Feeling a touch more energetic even though still at castrate level.
Might be just a mental thing as opposed to a physical thing?

As I said happy with undetectable, but would be happier if I knew it was the SRT.

Bobby Mac
Posted 12/15/2018 5:21 PM (GMT 0)
Just wanted to give an update as to how I’m recovering post SRT/ADT. My seven month course of Lupron ended on 10/4 and I just received my latest testosterone level and it came back at 287. In February just prior to starting casodex/Lupron I had a baseline T level taken and it was 342 so I seem to be recovering pretty well. I’ll get my latest PSA number back when I see the radiation oncologist this Tuesday. This will be my first reading since getting nuked where my T level is well above castrate level so hopefully it will come back undetectable. Fingers crossed!!

Mike
Posted 12/15/2018 6:49 PM (GMT 0)
Crazykick, that’s a super fast recovery of T, nice to read. (Naturally I relate it to my situation, last 3 month Lupron shot was November 20th, so I’ve got a ways to wait.

Good luck, please post the PSA when you get it
Posted 12/15/2018 7:17 PM (GMT 0)
Crazykick,

Yes quite a rapid T recovery.
Rule of thumb is T recovery takes half as long as you had HMT.

Rooting for your undetectable PSA!

Bobby Mac
Posted 12/15/2018 8:08 PM (GMT 0)
Thanks guys!! Besides next Tuesday’s PSA result which is a standard PSA assay I will have a ultra sensitive PSA assay done with my annual physical which I’m having done next Friday. I’ll post both results.

Prato, I’m rooting for your T levels to rebound as quickly as mine did!!

Mike
Posted 12/15/2018 9:49 PM (GMT 0)
Haven’t looked in on this thread in awhile, sorry I’ve been MIA.

Mike, Good luck with the PSAs. Hoping they come in “<“ and you can enjoy your T recovery.

Bobby MAC, Congrats on undetectable. As to your slow T recovery: I notice your T was slow to bottom out while on HT. Maybe the slow recovery is just the other side of your personal parabola. (This seems like an apt moment to remind you I have no idea what I’m talking about.)

Ken, Nice car.

Rob, Nice refrigerator magnet.

I get my last 3-month Eligard injection on Monday. But what I really need to focus on is the rest of my health—dropping 20 lb, eating better, exercising more, or else for sure something other than PCa will kill me.
Posted 12/16/2018 12:01 AM (GMT 0)

Saipan Paradise said...
I really need to focus on is the rest of my health—dropping 20 lb


20 lb? From where? You appeared to be fit to my eyes (but I don't see your scale either)
Posted 12/16/2018 4:08 AM (GMT 0)
All in the belly. I was 170 when I came to Saipan in 2007; held the fort at 180-185 for many years. If I could get back to 180 and stay there, I'd be satisfied.
Posted 12/16/2018 12:57 PM (GMT 0)
Same as me Rich. Gained about 7 pounds since starting Lupron. All around the belly

Re the car, thanks, I’m hoping it helps get my T back up faster 😂
Posted 12/16/2018 4:40 PM (GMT 0)
Good to see all these results.

Now 4 months out from the end of 40-treatment SRT, and 5 months out from last 3-month Lupron injection. Not as strong as before RP/HT/SRT, measured as part of an old person rural driving study, but energy is good, sleeping well, tennis twice weekly, feel well, even optimistic though ED is stubbornly persistent. At the end of July, in mid-HT and mid-SRT, psa was <.05 and T=8.

As happened after the RP, the doctor at MSKCC has not contacted me since the SRT ended.

So, is it time for me to ask him if he wants to see where we are, or is it too soon? Based on the great reporting on this thread (thanks, Skypilot, for starting it), it sounds like most of you are looking at good psa results but the testosterone recovery seems to vary greatly. I don’t want to annoy the doctor, but they did forget about me once before.
Posted 12/16/2018 4:49 PM (GMT 0)

Progressing said...
Now 4 months out from the end of 40-treatment SRT,
As happened after the RP, the doctor at MSKCC has not contacted me since the SRT ended.
So, is it time for me to ask him if he wants to see where we are, or is it too soon?


My Uro saw me three months after the end of ART and every three months for PSA & T, then after three undetectable tests he switched me to every six months. I believe that is standard protocol. My RO never contacted me and now he has retired.
Posted 12/16/2018 5:12 PM (GMT 0)
Progressing, I’m seeing my RO this Tuesday. My RO and URO have it set up where they swap seeing me every three months. This is the plan for the next year or so.

As for weight gain I like the others have put on about 12 pounds around my mid-section. Now that I’m getting my energy back I plan on burning that off with the help of my spin bike as quickly as possible.

Mike
Posted 12/16/2018 8:49 PM (GMT 0)
I'm not a SRT guy so I hope you don't mind me posting it this thread.

I weighed ~165 lb. when I was started on the ADT/Lupron in November of 2016.

Was able to keep it around that weight for the first 9 or 10 months, but last fall (2017) it started creeping up and I'm at 181 lb. now (extra weight pretty much all in the belly area).

Since the 23rd of November I'm not officially on ADT anymore (last 6 month Lupron was May 23rd) but it's still hard to keep the weight gain under control.

Kent
Posted 12/17/2018 3:55 AM (GMT 0)
Kent, having been on ADT for 2 years, I think it will take more time for the full effects of the Lupron to wear off. That would explain why you are having trouble losing the excess weight

Progressing, my RO at MSKCC told me that protocol is to follow up 3 months after last radiation treatment, which for me would be mid February. . However when I told him I’d be in Florida for the winter but said I could fly up for the appointment, he said it’s not that important, as their won’t be any mean9nful info to come out if it until the Lupron has a chance to work it’s way out of my body. And so he suggested I do the first follow up in May.
Also, he told me to make the appointment with his assistant. But I don’t expect them to call me, I have to call them.

Urologist told me to see him 2 years after SRT ends.
Posted 12/17/2018 1:22 PM (GMT 0)
Hey fellas - got my tattoo's last week and begin SRT Dec 26th. 37 treatments ending on Feb 18. I also am scheduled for a Firmagon shot Jan 3 (might already have said that can't remember). I'm a little concerned RO or URO have not mentioned getting a blood test for T level....will ask about that soon. Oh yeah, when I got the tats, I slipped the girl a twenty and she went ahead and put "Born To Rock" on my right side : )
Posted 12/17/2018 3:42 PM (GMT 0)

TeeItUp said...
Hey fellas - got my tattoo's last week and begin SRT Dec 26th. 37 treatments ending on Feb 18. I also am scheduled for a Firmagon shot Jan 3 (might already have said that can't remember). I'm a little concerned RO or URO have not mentioned getting a blood test for T level....will ask about that soon. Oh yeah, when I got the tats, I slipped the girl a twenty and she went ahead and put "Born To Rock" on my right side : )

Good luck and before you know it it’ll all be behind you!!

Mike
Posted 12/17/2018 10:02 PM (GMT 0)
Tee, go well — humor helps, and the techs will become your BFFs. Most of their day is same old, so injecting life into the process makes it fun for them too.

Prato, RobLee,Crazyick, I got off my “waiting for them to call me” horse and sent an email this morning.
At noon they called with an appointment on January 14. Thanks guys —
Posted 12/17/2018 11:25 PM (GMT 0)
Teeitup, good luck. It will be a slow slog but after 3vor 4 weeks tie will go faster. Lots of us, me included, sailed through it for the most part, hopefully you will too
Posted 12/18/2018 1:52 PM (GMT 0)
Tee it up... As the guys have said the first couple of weeks are kinda exciting something new but then it gets a little boring but with your sense of humor and a few more twenty's (LOL) it will be over before you know it! The hardest part for a lot of guys is getting the drinking water issue under control but don't worry the techs will let you know. I emptied out then drank my 16 ounces 45 minutes before treatment and never had any problems.. Keep us posted and wishing you the best in your treatment!!

Larry
Posted 12/18/2018 4:52 PM (GMT 0)
Thanks for all the support fellas! I'm ready to get started so it can be done with. I remember getting Da Vinci during the holiday period 2016 and darned if now I'm doing SRT/ADT during the holiday period again : (. Only good thing about it is not much else to do in Jan/Feb weather in Atlanta. Merry Christmas everyone - will post again after Firmagon shot on 12/26!
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