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When do Lupron SE’s start?

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Posted 4/16/2020 3:45 PM (GMT 0)
For those of you who are or have been on Lupron, how long did it take to start feeling the effects?
Hubby is having his first shot tomorrow. He’s been on bicalutamide for about two weeks now and they want him to continue that for another week after the Lupron injection.

As an aside, i find it quite interesting how it can have so varied an affect from one person to the next.
Posted 4/16/2020 5:43 PM (GMT 0)

star0210 said...
For those of you who are or have been on Lupron, how long did it take to start feeling the effects?
Hubby is having his first shot tomorrow. He’s been on bicalutamide for about two weeks now and they want him to continue that for another week after the Lupron injection.

As an aside, i find it quite interesting how it can have so varied an affect from one person to the next.

i'd say a month or six weeks. do you know the analogy of the boiled frog? to me that's what it was like. at first I thought this is not so bad....I am different.... blah blah blah
Posted 4/16/2020 9:12 PM (GMT 0)
I agree with F8. My first hot flash was the first symptom, and that was about a month after the first shot. They became quite regular for the whole time I was on Lupron, 3 years, about every 90 minutes day and night. Megace helped reduce them about 75%.
Posted 4/16/2020 9:25 PM (GMT 0)
Star, as you mentioned, everyone seems to have a different experience. I started out with Firmagon, which drops T levels much more quickly that Lupron. And i didnt really have side effects start until about 6 wees after my first shot. I did ultimately end up on lupron due to bad reactions at the injection site from the Firmagon
Posted 4/17/2020 9:27 AM (GMT 0)
about 2 months after 1st shot for me and still going on 12 months after my last shot.
Posted 4/17/2020 12:08 PM (GMT 0)

Skypilot56 said...
about 2 months after 1st shot for me and still going on 12 months after my last shot.

Yikes...still. Is your testosterone not rebounding?
Posted 4/17/2020 12:20 PM (GMT 0)
Same here - started 1 - 2 months in, increasingly annoying for 2 & 1/2 years I was on, then took another 2 & 1/2 years for most SE's to go away. Some never went away.

This time around there were less SE's overall, but the Xtandi has added in some new ones while augmenting the old/usual ones.

Makes me appreciate long daily runs with my Labrador Retriever even more.
Posted 4/17/2020 12:57 PM (GMT 0)
Star, don't know where my testosterone level is at right now, was suppose to get it checked next week but everything got cancelled.
Posted 4/17/2020 2:39 PM (GMT 0)
Larry’s ADT lasted two years, correct me if I’m wrong Larry. If your husband is on six-month treatment it should rebound reasonably quick for most. Mine took 14 months after 6 months on adt, but many rebound quicker
Posted 4/17/2020 2:55 PM (GMT 0)
I can't remember the exact timing, but the 1-2 months that people have said here sounds about right. What I do remember is that when I first got a hot flash, I thought "well, this is amusing." But that quickly got old and I grew to really dislike the hot flashes. That said, while ADT is a slog, it is doable. Just keep putting one foot in front of the other and eventually you'll get to the finish. Good luck to you and your husband!
Posted 4/17/2020 3:18 PM (GMT 0)
Star yes as Prato said I was on it for two years and even tho I suffered some pretty crappy side effects and still do the alternative is a lot worse! I was just thinking about that this morning as my Grandson n I were out walking the dog and then looking at our neighbors house that caught on fire yesterday pretty much destroying the interior thank God for our little town fire dept that didn't worry about social distancing as it was super windy yesterday and we have lots of trees in between our houses. Sometimes a secondary treatment like ADT, Radiation, and Chemo are a more difficult decision then the original treatment. Larry
Posted 4/17/2020 6:03 PM (GMT 0)
I am an outlier — I had no real noticeable side effects during my six-month course of Lupron except for weight gain. I wish your husband the best with his treatment.
Posted 4/17/2020 9:40 PM (GMT 0)
My first symptom was a warm feeling in my lower legs. This was at about the 6 week mark. I thought, "wow this is not as bad as they said". A couple months later I didn't think that anymore.
Posted 4/18/2020 7:20 PM (GMT 0)

I started on LUPRON, immediately upon diagnosis in 2013, and have been on various forms of ADT for almost seven years now - continuously.

I started with LUPRON, tried FIRMAGON next, but found the greatest success with ZOLADEX, because it eliminated what are called "spikes and flares" in my P.S.A. values.

Back to LUPRON ... I honestly began feeling side effects - in the form of "night sweats" - within the first few nights after receiving my first LUPRON injection.

That was my experience ... and you have gotten excellent feedback from others here, already!

So --- don't worry if you don't experience any side effects for a while, but don't be alarmed if you do.

My dad, who stands alongside all of us here, is also a prostate cancer comrade. In fact, Dad and I share the same oncologist.

He had the best advice EVER for me:. "If you are feeling a side effect (such as a hot flashes or some night sweats) that means the medicine is WORKING, my son."

Some helpful things that have helped me and some of my "cancer comrades" on ADT shots, such as LUPRON:

Ceiling Fan or Room Fan (Living Room & Bedroom)
Cold Water (Water Bottle On Your Nightstand, Too)
Ice Pack (Some Fellows Put One On Their Nightstand!)
Cool Cotton Bedsheets. (Easy To Launder)
Double Sack Your Pillows With Two Pillowcases (Due To Night Sweats)
Cotton Boxers Or Briefs
Cotton T-Shirts
Shorter Haircut
Light Cotton Oxford, Adjust The Buttons, For Social Events (T-Shirt Underneath)

Most of all - stay active to boost energy and to avoid weight gain --- walk the dog, mow the yard, visit the gym, plant a garden, ride your bike, or start a walking routine. Keep it fun, and stay consistent.

Remember my dad's advice: "If you feel a little different, that's the medicine busy WORKING!" That advice helps me navigate!

With my best, with seven years in this game,
Cyclone - # Iowa State University
Posted 4/19/2020 1:13 PM (GMT 0)
Thank you all. I appreciate you taking the time to reply. It helps us know what to expect.
Posted 4/20/2020 1:36 AM (GMT 0)
I never have had to go to ADT (knock wood) but my dad did, back before Lupron--he was actually given estrogen every 28 days (late 1990's). His only comment was, "Your mother had no sympathy at all". Said with a smile. He passed in 2004.

More significant than the sweats and weight gain, was as the son observing was the obvious brain fog. That (to me), would be my bigger concern.
Posted 4/20/2020 5:11 PM (GMT 0)
I am 7 weeks into ADT. Casodex and Lurpron. I start radiation in a week. Also had RP 14 months ago. I would take surgery over this anytime. It seems my body does not like Lupron. Hot sweats and fatigue all the time. I never took naps prior to ADT, now I do daily. Can't wait to add radiation to the mix. I got my tattoos today. Such a rocky road we are on.
Posted 4/20/2020 5:21 PM (GMT 0)
As most of us have said more than once, there is no free lunch in this PC Business. Every treatment has its issues.
Star, for you guys, i hope the ADT is a nothingburger, we've seen that before.
Posted 4/21/2020 3:03 AM (GMT 0)

FranPro said...
I am 7 weeks into ADT. Casodex and Lurpron. I start radiation in a week. Also had RP 14 months ago. I would take surgery over this anytime. It seems my body does not like Lupron. Hot sweats and fatigue all the time. I never took naps prior to ADT, now I do daily. Can't wait to add radiation to the mix. I got my tattoos today. Such a rocky road we are on.

I did ADT, seeds and then IGRT. I chuckled out loud when you said "it seems my body does not like Lupron" smile
Posted 4/21/2020 3:23 AM (GMT 0)
I am about 3 months in. I do not know what my T level is.

The only SE I have suffered is feeling tired, and its an odd kind of tired. The trick for me at least is to keep moving.

Before this Covid crap I was at the gym everyday (45 minutes) and I felt amazing! Slept like a baby. No sweats. No hot flashes. Losing weight.

So Lupron can be tolerable, but your husbands mileage may vary.

Dr also recommended calcium and vitamin D3 supplements (I take 2 Citrcals each morning). Its for my bones.
Posted 4/24/2020 6:16 AM (GMT 0)
I'm really unclear as to beginning of SE. I think libido lessened by end of first month, then emotions. No hot flashes I am aware of.

This journey is very confusing so far. I think I have lost libido and was surprised to learn I am still aroused by touch and fantasy.

Post Edited (JulieHusband) : 4/24/2020 8:42:49 AM (GMT-6)

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