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HT brethren - an early observation during recovery from ADT2

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Posted 4/26/2016 5:39 PM (GMT 0)
So, I was on ADT2, Lupron and Casodex (bicalutamide) for 3 years. I quit taking the Casodex on March 11 because I ran out and was almost done anyway. The last 4 month Lupron shot "officially" ran out March 23, when I consider my recovery phase to have begun in earnest.

I'm already feeling noticeably better! This has to be from the Casodex going away, because it has a far shorter half-life than the Lupron does. So, my theory is I'm feeling recovery from Casodex, if not yet a lot from the Lupron.

The fatigue is still with me, but significantly improved over just a month ago. We had a 5 hour car trip last month and again this month. Last month after about an hour or so I was losing it, so my wife drove the rest of the way home. I fell asleep immediately when she took over driving. This month, we did the same trip, and I could have driven the entire time! Felt pretty good, and definitely not the overwhelming fatigue I have for so long.

Just curious if others have noticed anything like this. I still get hot flashes, and am still searching for my libido, but my general "lack of motivation" problem has also diminished quite a bit. There are definitely resurgent levels of interest in hobby/recreation pursuits that haven't been there for, well, years.

Maybe a lot of this was due to Casodex. Haven't heard much of its side effects.

Or, maybe it's just psychological and my mood has lifted by going from the treatment phase to the recovery phase. Whatever the reason, I like it!
Posted 4/26/2016 5:51 PM (GMT 0)
I stopped my Casodex at the same time the Lupron "wore off" so I'm not sure I noticed much one month out. And I only had an 18-month HT sentence, so in theory my recovery would be faster. I guess the other variable is I was also on Zytiga as part of my treatment. I remember being disappointed that it took a 2-3 months (as I recall) for the hot flashes to go away, but they will end and boy will you be thankful! Libido was actually the slowest to recover--it's still not really back, but it is much improved.

Good luck to you--you deserve a rapid T recovery after the journey you've been through.
Posted 4/26/2016 11:59 PM (GMT 0)
Hi Redwing, congratulations on the end of a long 3 years.

I was on xtandi(enzalutamide) and zoladex(goserelin) for only 6 months. My understanding is that casodex and xtandi are cousins in the same family as are lupron and zoladex cousins in their same family. I had my last 3 month shot of zoladex around mid-sept,2015 and my last pills of xtandi around 12/7/15. My fatigue gradually improved and just recently do I feel pretty good. Libido slowly coming back just about a month or so ago, very slowly. No testosterone yet but they said I should expect a rapid increase soon. Hot flashes just started subsiding quite a bit in the last few weeks. For me the 6 months of HT knocked me out sexually; no libido and no function even if I wanted to. I can't tell if function would have improved or not because I had the weird combo of HT and surgery(12/15) so there is really nothing going on down there. I felt like I had some shrinkage from the HT(testicles definitely shrank during the 6 months) but again mixed with some likely shrinkage from surgery I don't even recognize the poor guy anymore. Strength and stamina are improving very slowly but noticeably, mostly in the last few weeks. The fat around my stomach area is ridiculous but hopefully those few things will improve greatly when the testosterone comes back.

Again comparing my 6 months to your 3 years is not even close but maybe with some of your fast noticeable changes you can get lucky and have a lot of positive changes soon. I know my spirits lifted a lot at the end of my 6 month sentence. I wish you all the best...Jim
Posted 4/27/2016 7:45 AM (GMT 0)
Redwing, it's great to see that you're getting more energy. Renewed interest in hobbies is good too. Hopefully you're wearing off the "fog" from Casodex and Lupron.

I've been off of Casodex for about a month as well. My monthly Lupron is continuing for now (to be reassessed in June for a complete vacation). I think I've noticed a slight increase in muscle strength - muscles feel like they are stronger. Also getting some feelings back in my groin area that have been gone for over 3 years. Those are definitely pros along with some short spurts of energy but on the con side I'm feeling exhausted more during the day and my hot flashes have gotten more intense. I'm used to the hot flashes and the subsequent cold spell but they still surprise me at how hot I can get (totally in a dripping sweat) and then be shivering cold just 2-3 minutes after. All that said, I think I'm feeling a general sense of being more well after being off of Casodex for about a month which is definitely a step in the right direction.
Thanks for the update!
Posted 4/27/2016 11:47 AM (GMT 0)
Hi Jerry, glad to see you are bouncing back I was on HT for a little over three years and being a little older than you, I was prepared for a longer recovery time. My uro says that Lupron has a six month half-life and is still effective down to the last 10%. Thus he told me not to expect any improvement for 18 months. Boy, was he right. In the last six months I have noticed very steady improvement. I have lost 17 of the 30 pounds I gained, my T has gone from 3 to 265, my vitamin D has gone from 40 to 75, and a couple of weeks ago for a stress test the doctor actually shaved some of my chest to affix the contacts. Six months ago my chest was like a peach.

Give it a little more time and I think you will see the results. In my experience they will come on pretty quickly as you T starts doubling. Hormone suppression is far more significant on our body functions then our doctors tell us, in my opinion.

All the best to you and Connie,


Jack
Posted 4/27/2016 12:26 PM (GMT 0)
Totally agree, although I think it took me 6 weeks to see some improvement.

Feeling much better now. I notice a huge difference in terms of what I am able to do in the gym.

I also notice a return of stirrings down there -- that took 4 months.

My HT vacation started 12/1. I suspect it will end very shortly, since the aforementioned stirrings/improved gym workouts usually mean my T is getting back up there (and the PSA soon follows). I'll know in about 3-4 weeks when I do my next round of tests.

Mel
Posted 4/27/2016 12:33 PM (GMT 0)
After my first round with ADT2 (casodex and Lupron) I began to feel a whole lot better after about five months post Lupron shot. Energy levels began increasing and overwhelming fatigue started going away. After stopping casodex the bone pain went away. Unfortunately though my PSA started rising again. So back on and then Castrate resistant. I could go on but whats the point.
Posted 4/27/2016 1:26 PM (GMT 0)
Thanks for the encouragement and kind words, everyone!

Jack, we miss seeing you guys! Glad you're recovering, you and a few others are my inspiration and I follow your status avidly. Of course we're all individuals with our own physiology, but I'm sure looking hard for positive signs for recovery from this stuff. Anyone heard from Southern Comfort lately?

Gunner34, I hit the gym twice a week, and it has long felt like I'm barely able to hold the (diminished) ability I have. Weight, reps, very constant with little gain. It seems like one day I'll hit my reps ok, then another I'll fall a couple short. Weird. I've ascribed it to maybe my nutrition level at the time, hydration, rest, some kind of variable condition. I'm really hoping to see some gain in weight capability (and, well, to lose a bit of weight I'm carrying!). And the hot flashes, man, I'm hoping for some relief so I can get a better night's sleep; every night they wake me two or three times, and I can't get back to sleep until they pass.

Mel, we'll hope for your vacation to extend as long as possible. It almost seems like taunting, that you're off of it long enough to begin feeling recovery, and then back on it again.

Almost a 10, those numbers are what we'll be watching too, of course. It's going to be a waiting game since this is my first time off of HT. I'll finally learn after all this time whether the radiation therapy was effective or not! We'll be testing quarterly to monitor PSA and T recovery. I'm not nervous about it, but that's the game, isn't it?
Posted 4/27/2016 1:40 PM (GMT 0)
Hi Jerry,

Congratulations on getting off of ADT2. So glad you're starting to feel better. In time, guess you'll feel much much better! Dealing with ADT2 ain't no walk in the park!

Hot Flashes: Last month, my MO ordered a shot for my HF! Since getting the shot, the HF has virtually dissipated (thank God)! Prior to the shot, the HF was unbearable! At the moment, can't remember the name, but do know it is given to women as a birth control!

Again, I'm very happy for you and your bride for this update!

Keeping you in my daily prayers.

Dave
Posted 4/27/2016 3:15 PM (GMT 0)
For what it's worth, my brother tried a Chinese traditional supplement called Great Yin Da Bu Yin from Heath Concerns after talking to his acupuncture guy. He said his hot flashes disappeared after a week. I don't know what ADT he is still on, but I know he still had hot flashes after Zytiga was discontinued. The patches didn't solve the problem.
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