ADT and SRT Journey Part 3

Good question, and I look forward to the responses.

My uninformed guess would be that they know this full well, maybe are trying to be encouraging, or maybe rejoicing that the Lupron is working. Of course, if they don’t check psa during the initial Lupron period before RT, or don’t check it during RT, the only referent point is the pre-ADT/ART/SRT number. Tall Allen had posted earlier that the issue is not how long it takes for the Lupron to exit but what happens when the testosterone recovers.

I'm kind of in the same boat as Rob Lee. They have been testing for PSA every three months, and sometimes more frequently when the Uro and MO don't communicate. I think it is kind of a disaster check to make sure the Lupron is working. So I'm <0.1 every time. They never did a baseline testosterone, so I don't know what normal is. First Lupron shot was in December; January T=31; April T=21 - so Lupron is working.

I discussed this with my RO recently - I'm on Lupron for 18 months, so April 2019 will be my last 3 month shot. That means that I won't have a meaningful PSA test until early to mid 2020 - maybe longer than that with 18 months of Lupron. Nobody had a guess as to when testosterone would return.

Cheers!

Rob

Had my T tested just before starting ADT, T=431. Not since. Will have T and PSA checked in two weeks.

I noted a couple of questions here that have not been addressed, so here is my experience:

'They' say, it takes as long to recover from Lupron/Eligard etc as you were on it. That means that if you were on it for a year, it takes a year to recover after that last dose wears off - as much as you are going to as there are often permanent 'side effects'. My personal experience is that after 2 & 1/2 years of that, the 'side effects' are still with me 2 & 1/2 years after it supposedly wore off.

The radiation side effects increased for 3 years after I got my 80 Gy and peaked Oct - Dec 2016 - radiation colitis, cramps, much increased bleeding from hemorrhoids and major changes in bowel habit. I am told by other survivors that these will gradually fade over the years. 5 years after RT and the side effects are still part of my daily life. 1 testicle did not recover from luprolide chemo, which is sorta good news as my cancer remains hormonally sensitive, sorta bad news as I have little interest in sex any more. Drumroll until I get injected again, blood test in 2 weeks.

My advice remains the same: eat right, get lots of exercise and rest. My plan is to start a reduced calorie and increased exercise routine when I go back on Eligard. I remain, as always, on a reduced calorie and serious exercise daily routine.

Good enough to say again:


Seems that the usual “there may be some side effects to RT, but they usually clear up rapidly” warning many of us are given is both very optimistic and somewhat uninformed.

Hard data on the implications of ongoing ADT and RT effects is impossible to find. The medical and drug community has very little motivation for in-depth studies, and the several patient surveys floating around are far from conclusive.

As usual.....self advocate!

garyi said...
Seems that the usual “there may be some side effects to RT, but they usually clear up rapidly” warning many of us are given is both very optimistic and somewhat uninformed.

Hey Gary... finished with RT now? Or is this your last week, or maybe your final day?

Sorry, I lost track. We just returned from a week in Orlando, where we discovered we can't plan on more than a few hours at a time like we used to. Seeing the fireworks at the end of a long day just isn't as important as it used to be.

Richard, congratulations, glad that chapter is behind you. Here’s hoping it’s the final chapter.

Prato, thanks for the good wishes.
Gary, I could re-gift you my certificate so you can re-re-gift it to your RT team.

Saipan Paradise said...

Gary, I could re-gift you my certificate so you can re-re-gift it to your RT team.

SP....I knew I could count on your frugal nature and extensive re-gifting experience Email me a picture of your certificate and I’ll send you one of the plaque I’m having made.

Larry....hang in there. The fog will clear.

I’m still searching for serious studies on the long term side effect implications of A/SRT supplemented with ADT. I ‘imagine’ they don’t exist, and even our forum patient advocate can’t post any citations; just a comment on an off topic SBRT study....but I digress.

Excellent data Redwing, and happy your testosterone is way up. There is always hope!

How long after your last four month Lupron shot did you stop Casodex? I’m still taking it; SRT ends this week, and my last six month Lupron shot was in mid January. I’m considering staying on mild Casodex for another month, while still under the full effects of Lupron.

Gary, was wondering about those updrafts and downdrafts we experience flying and the pucker effect you get maybe that's why the MRI's with the coil didn't bother us!! LOL. Hey are you flying again? My new mag just came in so hope to get it put on this week. Progress don't know about the age thing but look forward to the days when I can swing thru the trees beating my chest while I'm chasing Jane around the jungle!! well at least entertain the thot!!! But for now guess the Lupron is doing it's job

Larry

Progressing said...
Wonder if the recovery of testosterone might be age related?

Yes, I've heard that T recovery is related to both age and length of ADT, being slower and ultimate T levels lower for older men and for those on longer courses of HT.

garyi said...
... my last six month Lupron shot was in mid January.

Mine too! But of course mine started a year before yours. But we'll both be going thru puberty together!

Redwing57 said...

Date............Testosterone
3/15/2016....ended ADT2
5/15/2016....132
8/28/2016....290
12/7/2016....350
3/13/2017....544
By July 2017 it was over 700 and we stopped checking.

Glad you're feeling better Redwing. The timeline you've presented is pretty much what my Uro told me to expect. He said it would take 'about a year'. In your case, it was approx six months from zero to around 300, then a year later to hit 700.