ADT and SRT Journey Part 6

Hey that's great news good to hear from you!!

Larry

Congrats, Noggin! Thanks for the update.

Hi Noggin great to hear from you! I had kinda let the thread take a back seat for a while then saw where you had mentioned it so thot maybe I would refresh it for some of our new guys that are starting down this path. And since my birthday is today maybe a good time to update it a little. I started this thread back in Dec.2017 as i was preparing to start Radiation I had been on Adt since Oct 2017. I had heard lots of things about Radiation and wanted to see if I could guys to relate their experiences. Well lo and behold there ended up about 5 or 6 of us that were starting this same journey all within a couple of months time frame. If I remember the "gleasons" ranged from 8 to 10 so we were all pretty advanced Pca. I can't remember if every body had Adt or not. I don't know how the other guys felt but it was a great thread because as we went along so many guys joined in that were going through the same thing. I looked forward everyday to reading about other guys experiences and how they were handling everyday tasks. I think because it was so personal and a lot of guys going thru the same thing there was a huge participation. It is now up to Part 6 and I believe the largest thread on HW for posts. Some of us experienced not so nice SE's other guys not so much but what we learned is that Pca affects everybody a little differently each in our own way but it definitely changes our lives and our family's life. I would say that we all learned to kinda let the little things not bother us so much and to enjoy family and friends more! I'll just do a little updating; next week will be 3 yrs since surgery, I have been undetectable since Dec.2017 thanks to Lupron. I go every 3 months for a psa check now in April will go for a testosterone check also, hopefully it will be more than 6 which it was 2 yrs ago. Some of the things that have transpired which we believe are at least partly due to Lupron is my degenerative arthritis has really accelerated I had to have surgery on my back last May and will probably be looking at surgery on my fingers this May I wear a brace on my hands almost 100% of the time now. The big one tho is it also affected my heart valve so will be looking at a replacement, which now days isn't like before they just shove the old one out of the way and put the new one in place. I have been lucky I don't dread the PSA checkups cause it is what it is there is nothing I can do except be thankful for another undetectable and when it returns will have to deal with it then. If I can personally give any advice it would be to find a very good team of doctors and medical facilities if you are thinking or believe you have to go down this road! and the other little bit of advice is to keep exercising as much as your able to as this helps with not only keeping the brain in the positive column but helps some with the weight gain!!
Every body have a great day!!!!

Larry

What a coicidence. Just got my Testosterone results back and it came in at 246, up from 151 3 months ago. Labcorp ref range is listed as 264-916. My baseline prior to treatment was 330, as i recall.

Whats weird is this note at the bottom of the labcorp report...
"Testosterone Adult male reference interval is based on a population of healthy nonobese males (BMI <30) between 19 and 39 years old. Travison, et.al. JCEM 2017,102;1161-1173. PMID: 28324103."

Why would they report this way? what good does this do a man of our ages?

Anyway, this resul tis a bit of a relief, as the last few tests had me stuck at 150 ish, and i feared i'd be one of the guys that never gets back to a reasonalbe T level.

I'm still here - most recent testosterone was 20, PSA undetectable.
It seems the Lupron side effects are getting somewhat better - the fog is subsiding, and I can remember things again, arthritis in hands, knees and shoulder is still bad, but hot flashes have been greatly reduced. Really want to shed the 20 pounds I put on - keeping activity up, and watching what I eat, but I think it will take a testosterone recovery before I see anything meaningful.

Advice for anyone starting the ADT / SRT journey - get a baseline testosterone - my idiot MO didn't do one, so I don't know what a recovery is.

Rob

Saipan Paradise said...
.....T is now up to 528 ng/dL. My pre-ADH T was only 431. Go figure.

Somebody better warn you wife, Rich ;-)

So happy to see the new comments and updates. I get my first Lupron shot on Wed. I have been on Casodex for almost 2 weeks. Meeting my RO next week to lay out the radiation plan. I read the entire previous thread and it's was very good read. Congrats to the guys who blazed the trail ahead of us newer guys. The gift that keeps on giving. I will post my progress as things progress to keep this thread alive and maybe help some others. My stats are below.

ODAAT....

Welcome to the thread, FranPro. Glad to see you and your urologist are being proactive and not waiting till 0.2 to begin salvage RT.
I'll say to you what I said to someone else on this forum the other day: Be sure your conversation with the RO includes whether to radiate the prostate bed alone or the whole pelvis. There's no one-size-fits-all answer. Your signature doesn't say anything about lymph nodes; I'm assuming your surgeon harvested a few and they were negative for PCa. Still, with pre-surgery PSA > 10 it's worth bringing the subject up.

Noggin, don't sell yourself short on the smart part! We may not be doctors but I remember what my father would tell me over n over "Experience can sometimes be costly but it is still the best teacher" I think that is what has made this thread so interesting just a bunch of average guys going through our everyday experiences while on the SRT and ADT journey. I hope we are able to pass on some strength and comfort to guys starting down this journey, and maybe a suggestion here and there!! Thanks

Larry

I'm with ya Bobby Mac.

Last Lupron shot was April 2019 - three month shot, so theoretically on recovery since July 2019 - 9 months into recovery and last T was 20.

Rob

Bobby Mac said...
Worried because my testosterone is only 27 - been off hormones since August 2018.
Anyone else having trouble with low T after 18 months off of hormones?

Yes - I may have already mentioned this elsewhere... Final Lupron shot was Jan 2018, so two years later, T had crept up to only 36. I see signs of manhood returning... fewer hot flashes, a few dark hairs on my chest, my armpits may smell occasionally, and I sometimes do "notice" shapely women. Little Peter never budges, but do have the occasional erotic dream and instinctively check myself for any wetness. If so just a few drops of urine

Will I ever again have any "real" testosterone? Doubtful with only a single teste. Uro says no supplementation as it could feed the cancer. Worry is not the low-T, but whether PSA might increase along with testosterone.

Saipan Paradise said...
If SRT cured you, the added T won't matter... My MO's reaction last week when he saw my T had recovered and my PSA was still undetectable was, Well, that's a hopeful sign that SRT cured you. Don't be afraid. IMHO.

Thanks for the advice Rich. Congrats on your T recovery, and low PSA - but I am not so anxious to use the term "cured". And neither is my Uro. After all, I have only seen two meager testosterone rises so far, to 21 and 36. Out of an "abundance of caution" I would prefer to allow nature take its course - at least for a while - before tempting the fates with artificial supplementation. By now I have become accustomed to living with Low T and in fact welcome the slight improvements that I've recently seen. Thanks again, and I hope life in general has been going well for you.