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This time around with Lupron

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Posted 9/23/2019 3:13 PM (GMT 0)

So, almost three months ago I went back on Lupron as my PSA started to rise rather quickly.

This time though, the side effects are really kicking my backside.
I'm having hot flashes a couple three or four times a day.
The other times it was once every 4 or 5 days.
I am so much more tired this time, I never really feel rested at all. I tire out way faster and harder.
I think my wife must think I'm faking it, maybe not. Again, I have gotten tired before under Lupron, but not like the last three months.

And last of all, the waiting for the next PSA test is mind blowingly hard.
I've gotten to the point where I'm expecting the worst.
Before, I was almost always optimistic that Lupron would kick PSAs arse.
So depressed most of the time now.
No joy, I feel no joy..............
Posted 9/23/2019 5:05 PM (GMT 0)
Wow, so sorry to hear that it's going so much worse for you than before.

Would it help if I say that what you've described is pretty much normal for me?
Posted 9/23/2019 5:52 PM (GMT 0)
RobLee,

Nah, but my heart goes out to every guy who has it this bad. Stay strong brother, stay strong!

It's rather amazing how every step on this journey gives a new perspective.

I'm on intermittent ADT, and I love the 3-4 months during an ADT vacation where my testosterone starts to pick up but my PSA hasn't quite yet.
Feel the real myself for awhile.
Posted 9/23/2019 8:20 PM (GMT 0)
Chemical castration may be a cure (deferral) that's worse than the disease. When my time comes, I may just say NO.
Posted 9/23/2019 8:56 PM (GMT 0)
I understand that thought, but with my PSADT, I don't think I'd live but only a couple years.
I'm only 60, and I'd really like to make it to >70, hoping for >80, absolutely beside myself happy if >90.
Posted 9/23/2019 10:09 PM (GMT 0)

alephnull said...
I understand that thought, but with my PSADT, I don't think I'd live but only a couple years.
I'm only 60, and I'd really like to make it to >70, hoping for >80, absolutely beside myself happy if >90.

Got it...ya gotta do what is working for you!

BTW, add me you your lifeline goals, up to ~90, anyway.
Posted 9/23/2019 11:01 PM (GMT 0)
alephnull
Sorry for how ya feel,,I can relate.
On 8/28 I had my last 6 month shot and I too think this time is worse...More frequent and hotter and longer lasting hot flashes....
No to mention the tiredness our motivation to do anything.
May God bless you.
Posted 9/23/2019 11:49 PM (GMT 0)
Sorry to hear you are having problems. The waiting... must be very hard.

Hot Flashes? darned, I'd take 6 a day and throw a party. I get at least 30 and they are no joke. I get dizzy and nauseous with them. The worst is the emotional roller coaster. So, although it's no comfort, it can get worse. Take solace.
Posted 9/23/2019 11:56 PM (GMT 0)
Aleph, really sorry to hear you are having such a tough time. I’ve got No words to make you feel better, wish I did. Let’s hope you are going through an adjustment period and things get somewhat better soon. That’s what I hope for you.
Unfortunately this prostate business is all about the lesser of all evils, picking your poison. With the fast doubling time you’re doing the right thing for you and your family. Still I get it that it’s rough not sure what I would do if I eventually find myself in your shoes it will be a tough call knowing what I know about Lupron
Posted 9/24/2019 4:16 AM (GMT 0)
alephnull, hang in there, pal. Go ahead and vent here all you want -- we're with you.

Have you tried venlafaxine (Effexor) for the hot flashes? Some guys have found it reduces them significantly. For me, it helped some -- not dramatically, but enough to make the hot flashes more tolerable.
Posted 9/24/2019 1:01 PM (GMT 0)
Alephnull, so sorry you're having such a hard time this go-round. It's odd how this stuff affects you guys differently at different times. Randy's first Lupron shot just about killed him. He was depressed, suffering multiple hot-flashes and had ZERO energy. He stopped doing everything and would even go to the bedroom when the grandkids came over because he was so irritable. I really thought the depression would get him before the cancer did. When we were told the affects were cumulative and likely to get worse, I was doubly concerned. But, his got better. By about 6 months in, he rounded the corner and started tinkering with his old boats again, and re-engaged. And the hot flashes settled down. Here's hoping and praying that your symptoms do the same.

Donna
Posted 9/24/2019 9:21 PM (GMT 0)
Whew, I decided to have my test a couple weeks early.
Back down to 0.09, nadir baby!!
I should sleep a little better tonight.
Not good, but better.

Thanks guys, I really appreciate it!!
Posted 9/24/2019 9:25 PM (GMT 0)
Great to see that. 👍
Posted 9/24/2019 10:05 PM (GMT 0)
👍
Posted 9/24/2019 10:10 PM (GMT 0)
👍👍
Posted 9/24/2019 11:26 PM (GMT 0)
aleph, I have found that the Lupron hit me harder this time, too. And now that I've been on Xtandi for two weeks the hot flashes seem even worse. I want to second the advice about venlafaxine. It helps me somewhat with the hot flashes and makes me feel better emotionally. But I still get drenching sweats at least eight or ten times daily and they are often embarrassing. Yesterday I was trying to remember and explain something to a person and having trouble (Lupron brain?) and broke out in a drenching sweat as I struggled to remember. I'm sure he thought "the poor old geezer is really losing it". Hahahaha. And I get the fatigue and the weakness and the "I don't feel like doing anything" as well but I still think it's all worth it because I still enjoy living. I like to come here to complain, however. Glad to see that your PSA has responded.
Posted 9/24/2019 11:49 PM (GMT 0)

Argent said...
I still get drenching sweats at least eight or ten times daily and they are often embarrassing. Yesterday I was trying to remember and explain something to a person and having trouble (Lupron brain?) and broke out in a drenching sweat as I struggled to remember. And I get the fatigue and the weakness and the "I don't feel like doing anything" ...

Good news on your PSA aleph. And yes, venlafaxine has been a lifesaver, esp having had to deal with more than one cancer. Very stressful times. I'm becoming accustomed to the drenching sweats and problems with recall, and I don't have a problem with the low motivation, but do have good days when I can get quite a bit done... but with poor endurance.
Posted 9/25/2019 1:42 AM (GMT 0)
So, I wonder if it would be better to stay on ADT continuously to avoid possible worse side effects after coming off an ADT break?
Posted 9/25/2019 3:10 AM (GMT 0)

mattam said...
So, I wonder if it would be better to stay on ADT continuously to avoid possible worse side effects after coming off an ADT break?


A 2018 systematic review of the literature on intermittent vs. continuous ADT made a "weak recommendation" of intermittent for men in advanced stages of PCA (meaning locally advanced, metastatic or recurrent disease), mainly for QOL reasons -- most men like the holiday. It found no statistically significant differences in overall survival, progression-free survival, or cancer-specific survival. Here's the link: https://www.ncbi.nlm.nih.gov/pmc/articles/pmc6080876/
Posted 9/25/2019 2:09 PM (GMT 0)
Saipan,
I does feel nice to start feeling like a man again even if it's only for a few months.
It's also pretty strange to start being attracted to the other sex again.
Of course my wife complains that I become more argumentative.

As Tim "The Tool Man" Taylor used to say, Grunt clip
Posted 9/25/2019 4:05 PM (GMT 0)

alephnull said...

.....Not good, but better.

That is a fine start!!
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