New to hormone therapy: I started with... - Advanced Prostate...

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New to hormone therapy

BobH3 profile image
38 Replies

I started with a Lupron injection 10 days ago. When do people see the side effects start to kick in?

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BobH3 profile image
BobH3
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38 Replies
Fairwind profile image
Fairwind

The hot flashes will usually begin in about a month..It takes 6 months to a year for the rest of the side-effects to develop..

Jimhoy profile image
Jimhoy

Just interested in what they told you to expect?!!

Jc

BobH3 profile image
BobH3 in reply toJimhoy

The Dr just gave me a pamplet which only outlinedwhat they were but nothing on when they might start

Jimhoy profile image
Jimhoy in reply toBobH3

Bob

I get that and Fairwind is correct as far as I am concerned as well.

Side effects occurrence and severity very greatly by individual!!

Some get none, some get many!!

Could you summarize the information in the pamphlet for me!! I’m putting something together and input from many different men is very helpful!!

Thanks

Jc

GP24 profile image
GP24 in reply toJimhoy

Bob,

here are two reviews covering the side effects:

erc.bioscientifica.com/view...

hindawi.com/journals/isrn/2...

you may also view the presentations by Van Oort, Frydenberg, Shore, Ryan and Attard here:

urotoday.com/video-lectures...

Tall_Allen profile image
Tall_Allen

You are probably still experiencing the initial testosterone surge one gets with the first Lupron shot. It can be 1-2 months before your testosterone drops to castration level.

Savoy profile image
Savoy in reply toTall_Allen

At that point, there won’t be any question

LearnAll profile image
LearnAll

I had some chills followed by sweating hot flashes after 4 weeks. Now I hardly have any hot and cold flashes and tiredness has gone down tremendously. I am in 6th month of Lupron.

Wassersug profile image
Wassersug

Information on ADT side effects—how fast they come on and how best to manage them—is covered by the ADT educational team in their 1.5 hour facilitated online class. (see LIFEonADT.com). The class is free, evidence-based, and formally endorsed by the Canadian Urological Association.

The next class is in about week and a half. When I last looked there was still room for more patients and partners to attend. Although the course is Canada-based when there is room, patient starting on ADT from the USA and elsewhere can take it.

Note: The ADT Educational team has a paper submitted right now with data showing that the program significantly raises patients self-efficacy in managing many ADT side effects and reduces the burden of those side effects.

Richard W.

Kaliber profile image
Kaliber

Welcome to the Lupron crazy train brother. Hopefully your ride will be scenic and smooth riding. If not so much , the rest of us travelers riding in the bumpy cars have got your back.

Peace and welcome brother. Good luck ...

Schwah profile image
Schwah

I highly highly urge you to begin weight training three days a week. Use a trainer if you can afford one. If not at least use one for the first time to know what to do. My Doctor Who does nothing but prostate oncology was very clear that the people who did weight training did far better than those who did nothing or other forms of exercise. Relatively light weights to all muscle groups with at least 15 to 20 reps of three sets. At least one hour and 20 minutes each time. I actually gain muscle mass and lost weight and felt great. There were many times I felt like not going in to the gym but fear one out over laziness.

Schwah

VictoryPC profile image
VictoryPC in reply toSchwah

ABSOLUTELY.

marnieg46 profile image
marnieg46 in reply toVictoryPC

Mmmm like your honesty. However, I'm no expert but reading the many posts on this site there seem to be a lot of variations. Some seem to get years and years on just one hormone. How is that so?

GeorgesCalvez profile image
GeorgesCalvez

Lupron is slower acting that Firmagon, the level of testosterone rises sharply for a few days and then declines over around a month until it reaches subcastrate levels.

Firmagon is like falling off a cliff with the testosterone level crashing to subcastrate levels within a few days.

The effects appear slowly with hot flashes and sweating appearing first and then body hair loss and testicular shrinkage, etc coming along in the train. If you stay on either of them for a long time then bone mass loss will frequently occur.

Coming off them takes a similar time, months in both cases with the time increasing with the length of time you have been on them.

Men who have taken them for six months will all recover some testosterone but not all will recover the same level as before.

Men who stay on them for long periods have a good probability of never recovering any testosterone, they are on free ADT for life. For Firmagon it is 55:45 recovery after eighteen months, 45:55 recovery after two years and progressively downhill from there.

They are both dangerous for your cardiovascular health with Lupron being slightly more risky, if you get through the course of treatment and your testosterone returns then you gradually return to a normal risk for age and other factors.

Some men develop enhanced blood sugar levels that go back to normal when they stop the drug while others are pushed in to permanent type 2 diabetes.

VictoryPC profile image
VictoryPC in reply toGeorgesCalvez

GREAT REPLY....

marnieg46 profile image
marnieg46

Is that bird a Lorikeet?

My husband started on Lupron eight months ago. He has injections every three months so now has had 3 and apart from a minor hot flush every now and again, maybe one or two a day, that's about the only side effect he notices. You'll get plenty of shared experiences from others on this site which will be more informative and will give you a longer time frame for how thinks but from what I've read everyone is different. Early days but so far the treatment has been very productive with a PSA going from 4.7 to undetectable. Where we are in Australia the manufacturers of Lupron financially support an exercise physiology program (Man Plan) which has had a very positive effect on him emotionally and although quite the loner he has gone from being totally inactive to attending the gym twice a week until recently when a problem has halted his progress for the time being. Hope your journey with hormones is smooth and very successful 😊

VictoryPC profile image
VictoryPC in reply tomarnieg46

Just don't let them give you too much of it.

marnieg46 profile image
marnieg46 in reply toVictoryPC

You mean Lupron???

VictoryPC profile image
VictoryPC in reply tomarnieg46

ABSOLUTELY. Castration resistance will occur at 18 months no matter what they tell you. Victor/Senior Advocate

in reply toVictoryPC

Is that right?

BobH3 profile image
BobH3 in reply tomarnieg46

I went onlinec for the company to sign up for

the” man plan” but they said I needed a verification number from the pamphlet my doctor gave me. The doctor only gave me a phone number to call the company and a website and on the website it said I had to enter the verification number. I called the doctor back and he had no brochures and had never heard of anything called a verification number and said he only had the phone number and then the phone number that he gave me did not work.

Does anyone out there have a verification number off the pamphlet or a good phone number to call. ...Thanks

marnieg46 profile image
marnieg46 in reply toBobH3

Hi BobH3.

Are you in Australia and if so which city? If you're in Sydney I do have their number.

It's definitely worth following up apart from being so cheap ($5) each time you go. The best part is that the trainers are very understanding about all the things men might be experiencing as a part of the condition not pushy like a normal gym. I can't tell you how inactive my husband was .....you'd never believe me.....but because of the care he experienced from the exercise physiologists he became very enthusiastic and now that he's had to take a break due to an unrelated physical problem he really misses it and the benefits both physical and emotional that came from it.

From memory, the specialist gave us the brochure but he contacted them and gave them my husband's details and they contacted us. I'm fairly sure it has to happen this way via the specialist (or maybe your local doctor but I don't think so.) The company were very good and regularly contact my husband to check how he's going. Although 18 sessions are approved initially the physiologist says the company often extend the sessions.

Hope this is helpful.

BobH3 profile image
BobH3 in reply tomarnieg46

Sorry I live in the USA in Chicago

marnieg46 profile image
marnieg46 in reply toBobH3

ooops then I'm sorry I'm no help. I would suggest it might be like here in that the specialist needs to refer you first. Maybe your doctor was not familiar with the process. I was sure you were in Australia because of your bird picture. In Australia similar ones are called lorikeets.

Ramp7 profile image
Ramp7

It appears I shall be going down this path as well. Twelve years since RP and Radiation, the PSA has started its course upwards. Pet scan scheduled first and Lupron for 6 months suggested depending on scan results.

DrWrite profile image
DrWrite

"When do people see the side effects start to kick in?"

Not to be crude. but results start when your little guy can't salute.)

VictoryPC profile image
VictoryPC in reply toDrWrite

1-2 months then absolutely NO sex drive. You won't care about sex at all. That is what I hated so much.

VictoryPC profile image
VictoryPC

It will kick in after about 2 months. Do be fooled by so many do about how good you feel at first. That is the result of you body producing more testosterone against the Lupron. Once it takes hold the good feeling stops and then all of the side effects start. Hopefully you just did a one month dose and are monitoring your response to it. Otherwise they will keep shooting you with it as long as they can. I did it 6 months and it was horrible.

j-o-h-n profile image
j-o-h-n

Suck on the gas pipe....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/06/2019 7:12 PM EST

Kaliber profile image
Kaliber in reply toj-o-h-n

A car ...... you’re talk’in about a car ............ right ??

j-o-h-n profile image
j-o-h-n in reply toKaliber

ugotme....

Depends on the flavor of the gas.... Domestic or Imported... and the size of the pipe....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/07/2019 6:21 PM EST

Kaliber profile image
Kaliber in reply toj-o-h-n

Well ......... i’iss juss think’in where all “ my “ gas comes from ..... I got plenty of that ....

j-o-h-n profile image
j-o-h-n in reply toKaliber

Pull the ole pinky trick... eh?....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/08/2019 5:31 PM EST

Kaliber profile image
Kaliber in reply toj-o-h-n

I actually know what that is yayahahahaya. I used to “ pull that one “ on my grandson.

Peace brother j-o-h-n

j-o-h-n profile image
j-o-h-n in reply toKaliber

Hey that's the formal initiation to GranpaHood..... Next is finding the quarter trick behind the grand kid's ear...

And of course Peace to you too.....Gramps

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/09/2019 12:12 PM EST

Seebs9 profile image
Seebs9

2 months of 'I can do this no prob', Then I got hit by a bus. Hopefully your mileage may vary.

We got ya. Warn your significant other you will blurt out the truth from perceived crimes committed years ago. Tell her you love her now before the train hits, build up the credits.

binati profile image
binati

I think most have already covered the main parts related to what side effects. First and foremost the side effects vary from person to person. They also might vary if you get Lupron or Firmagon. Some people have major problems enough to persuade them to stop what is the simplest way to fight PCa. What is also universally said, from my experience is, that exercise and weight training help tremendously. Those who are physically very active have the least botheration from the side effects.

tallguy2 profile image
tallguy2

Everyone has covered the side effects well. I am 7 years on Lipton/Eligard. I counter the severe hot flashes and sweats with venlafaxine.

I too am an advocate of aerobic exercise. Mine is swimming laps. I must add weight training soon.

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