How many of you are especially tired ... - Advanced Prostate...

Advanced Prostate Cancer

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How many of you are especially tired for couple of days after you get your Firmagon or Lupron shot?

TEBozo profile image
55 Replies

My SEs are especially noticeable

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TEBozo
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55 Replies
Hex40 profile image
Hex40

I semi jokingly say I feel like a have Parkinson’s after I get my lupron shot.

in reply to Hex40

I call it Luppeyron !

DeanNelson profile image
DeanNelson

I've had 5, I swear for 3 days its all I can do to get up and pee....I feel awful. The first one was absolutely the worst feeling of my life...

TEBozo profile image
TEBozo in reply to DeanNelson

Thanks

Peterd110 profile image
Peterd110

Yes, and feel crappy and achy

RalphieJr64 profile image
RalphieJr64

Believe it or not. The dreaded Lupron shot puts me out of commission for about 8 weeks. Added fatigue, feverish and body soreness. I get another in 3 weeks, Not looking forward to it.

in reply to RalphieJr64

😫

Don_1213 profile image
Don_1213

Yup. And it seems each one gets worse. I'm up for my 4th 3 month shot at the end of September - I'm not looking forward to it. My WAG is they time the shots so that the old shot is still delivering a solid dose, and the new shot now starts adding to that and effectively doubling up the amount of ADT that we're getting until the old shot finally wears down.

Lupron sucks. No argument. The alternative probably isn't good either.

EdinBmore profile image
EdinBmore

Fatigue is common and can be devastating. Naps. Early to bed. Much weaker despite exercise.

Had last shot in May. Hoping T begins to return. PSA undetectable <.02

in reply to EdinBmore

Good luck !

Bigpike profile image
Bigpike

Yes, after Lupron I get hit for a few days. After shot I nap a few hours, go to bed sleep more. After 3-4 days the worst passes but I feel more fatigue for 3-4 weeks.

GoBucks profile image
GoBucks

I have had 4 shots. Approximately 2-3 days after the shot I get hit with the Lupron Flu. Lasts 2-3 days. Excessive fatigue and body aches put me in bed. Usually 1 very bad day and each day thereafter gets better.

preciousbz1 profile image
preciousbz1

Yes tired and fatigue for 2-3 weeks, then it gets better for me..Good luck and feel better..

DrWrite profile image
DrWrite

Hard to tell, TE, since I am chronically tired 100% of the time. :-)

TEBozo profile image
TEBozo in reply to DrWrite

I'm sorry 🥴

in reply to DrWrite

Haha. . Thought I was just I..

monte1111 profile image
monte1111 in reply to DrWrite

Yeah. My hip is tender for about 3 days. Otherwise it is just another day in the fog. You hit the nail on the head for me.

GeorgesCalvez profile image
GeorgesCalvez

The starter shot of Firmagon really knocked me off my perch. It was administered at home by a nurse and after he had left I just lay on the sofa all afternoon.

It was pretty painful for several days and I could not tie my own shoelaces as I could not bend.

After that the pain of the shots got worse and I would take quite a bit of ibuprofen to lessen the pain then suddenly they changed direction and now I find them just sore, I have a few ibuprofen a day and I feel almost completely normal.

I suffer in the early morning, sweats and muscular pains about 2am, I get up and walk around, if it is extra bad I have a sneaky rum and Coke which seems to help.

in reply to GeorgesCalvez

Cuba libre!

monte1111 profile image
monte1111 in reply to

USA Libre! USA Libre. My rum and Coke days are gone. It's now whiskey and Pepsi. Give me that carbonation. Whoa, back up. Drink Black Velvet from Canada. Canada Libre! Canada Libre! It's Libre time somewhere. Enjoy.

in reply to monte1111

Canada libre.. as long as you are libre drinking it .

TEBozo profile image
TEBozo

I have gotten some marijuana from Colorado that is the strain that relaxes the body. I'll try it soon in a very small amount to see if it helps me sleep. Taking gabapentin at night helps but the "minor" hot flashes about ever 3 hours wake me up and interrupt my sleep.

monte1111 profile image
monte1111 in reply to TEBozo

Gabapentin has certainly almost eliminated my hot flashes. I take for foot neuropathy. Still up about 3 times a night. Does not seem to help neuropathy. Recently doubled dose to 600 mg. 3 times a day. Really helped lower back pain - probably 2 lower disk degeneration. I don't think the 50% T12 spinal compression causes pain. I could be wrong. Causes extreme fatigue in evening. Will go back on dosage I think. Will discuss with MO.

mrbill2 profile image
mrbill2

Yes, really fatigued for several days after Lupron. I have been doing them for 2 years now, and it really seems the side effects are cumulative. I asked the MO if there was any chance of a holiday. "Nope." Tomorrow is my 9th year since RP. With a Gleason 9 I will put up with the fatigue.

in reply to mrbill2

I’m five years in and fatigue goes with the territory doesn’t it? I salute you in those nine years 🥳

tsim profile image
tsim

First 4 or 5 days are particularly bad. In May I was supposed to DJ at my nieces graduation party. Couldn't get out of the bed. I'm glad that was my last Lupron injection. Now to get my T back, junior's been getting a lot of friend requests. :)

DeanNelson profile image
DeanNelson

Marijuana helps me immensely , a good small hit of sativa and latte. And I am up and working around the house. Laughing talking and EATING..Try it...it changed the quality of my life for sure

in reply to DeanNelson

You and me both brother ! ✌️

carbide profile image
carbide

I got Eligard (Lupron =) 2.5mo ago,

I have had no fatigue but definitely encountered hot flashes.

Hot flashes living in Phoenix in summer is not good. 😕

in reply to carbide

Hot flashing in 115 heat is a charm . Glad September is here..🌵

monte1111 profile image
monte1111 in reply to

104 degrees here today. Again. I can hardly get my T-shirt off in evening it is so wet from sweat and sticking to my body. But I'm odorless.

in reply to monte1111

Darn heat wave .ouch! But Oderless is good! Fall is coming nun to soon . Blistering heat on the desert floor with little rain . Luckily we just moved to a better climate of Prescott . About 30 degrees lower than the floor below .. Take care monte ..

monte1111 profile image
monte1111 in reply to

Sure you will just love Prescott. My family lived there a year while I was in service. Had to move to find work. One of the greatest places on earth according to my dad. Very great intellect without a practical bone in his body. Died broke. But almost all of his kids are doing quite well.

in reply to monte1111

He done good with you monte. My dad didn’t care a scutch above money either . He just loved nature .. 👣

packfan profile image
packfan

Two months into Lupron treatment, after two 1 month shots, the following 4 month shot wiped me out. Extreme fatigue, severe brain fog, and general feelings like the flu. My T level was already <10 when I received the 4 month shot, so was it simply low T that caused the fatigue or does Lupron add additional side effects? I saw a post recently (I can't find) of someone saying that removing Lupron from his Lupron+Zytiga protocol helped with mental clarity. Mental clarity is my biggest issue with Lupron.

I still have 7+ years of a career than requires mental focus, and long work days. During my short ADT treatment (6 months + 3 months recovery), I had to scale back to 30 hrs a week and depend on very generous coworkers to help me at work. I felt fortunate, but it is somewhat scary to be facing a long-term ADT protocol.

Does anyone have experience that Lupron has side effects outside of T suppression? I ask since if further HT is required, I would consider an Orchiectomy to lessen the side effects. My MO maintains the majority of side effects are from low T, and I know that is the general consensus.

Grasping at straws really - I can't envision myself staying at my job if I have to start Lupron again. Thanks in advance for any advice. Maybe a topic for a new thread.

in reply to packfan

I did Lupron for over a year then I had an orchiectomy . I’m happy with No more shots that I believe are tuff on our Hearts .. but most of the side effects are the same with orch as they are with adt ...it is simply lack of t that drives side effects . Good Luck and go packers ! I’m going for the rams being a westerner myself . Take care .

packfan profile image
packfan in reply to

Thanks for the response. Best wishes.

Muffin2019 profile image
Muffin2019

I guess I am lucky, no fatigue just hot flashes.

Geoff22 profile image
Geoff22

I have had a few rounds of Lupron. The first round in 2011/2012 had minor side effects. My latest round started in December 2018 and will end in December of 2019. I hope. depends on PSA. This latest round had the most side effects. I definitely experienced loss of memory and cognitive issues. I had pain in a number of joints. Toes, heal, knees. Loss of muscle strength, depression. In the big picture of cancer treatments I am sure there are many with worse side effects.

The downside is I will be on lupron and or other drugs for the rest of my life. As most of advanced prostate cancer patients will. But it is better than the alternative.

Fortunately I am retired and can set my own schedule. My heart goes out to those who are still working

Thanks for sharing

Hirsch profile image
Hirsch

Exercise exercise exercise 😊

TEBozo profile image
TEBozo in reply to Hirsch

2 mile walk yesterday, lifted weights today. You are right.

tallguy2 profile image
tallguy2

Maybe I am just used it it. No obvious side effects excepts for the sweats and hot flashes (venlafaxine takes care of 90% of those). I just keep in truckin’

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

Not me.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/02/2019 1:47 PM DST - Pinnes

timotur profile image
timotur

Six months into Lupron + Zytiga, and first 2-3 days after Lupron shot I have more muscle fatigue than normal, and need a mid-day nap or two. I'm taking one-month shots so the lower dose probably helps, but it is a PITA to get a stick in the butt every month.

monte1111 profile image
monte1111 in reply to timotur

Hi. Thanks for the laugh out loud. Took me awhile. Damn lupron. Finally figured out you meant a shot in the butt every month. Was going to suggest if you were getting a stick in the butt every month, you might consider changing dr's.

timotur profile image
timotur in reply to monte1111

Haha, funny, ja, I'm going to tell the nurse that one. Good thing I didn't say stick UP the butt!

Just had my first 6 month shot. Put me to sleep for 3 days. Didn’t notice that with the 3 month shots. Drs getting tired of seeing me so upping the time between visits. Actually I feel the same about them.

TEBozo profile image
TEBozo

IT IS MONDAY AND I am back! Energy returned. Going to the Y to exercise!

ctarleton profile image
ctarleton

With widespread advanced disease I've been on 3 mo. Lupron shots for almost 6 years, with added Xtandi for almost 3 years. My daily or weekly levels of energy or tiredness do not seem to vary depending upon the short term administration timing of either drug. Over a period of many months or years, however, I have had definite trends toward lesser overall physical strength and stamina. When I added Xtandi there was a definite up-tick in general fatigue.

(As I understand it, the various depot injections of drugs like Lupron involve an assortment of differently sized "micro-spheres" designed to have properties that release the drug as evenly as possible over the depot period. The oral medication Xtandi is taken daily and reaches a blood serum "steady state" within approx. 28 days which is equivalent to roughly 6 times that achieved by a single daily dose.)

Personally, I think it can vary by individual. Some other men I've known have felt "different" at either the beginning or the toward the end of their medication cycles. Some don't notice it at all. Sometimes I've had similar perceived comings and goings of hot flash symptoms, too.

Charles

TEBozo profile image
TEBozo

I am going to beat this, even if it kills me.

Boywonder56 profile image
Boywonder56

Lupron/ earleada....2.6 years trial....double the misery....brainfog is redicoulus...really am getting concerned about early dimentia.....houston humidity TRUMPS phoenix...but yeah dont stink

Collarpurple profile image
Collarpurple

Husband said his rear hurt for a few days

Said he felt like he was sitting on very large

Wallet. Lol wish that wallet was full of money

Sxrxrnr1 profile image
Sxrxrnr1

When I was on Lupron, I did monthly injections of 1/2 regular dose. T after 3 injections settled about 8 and remained there.

Did incur normal lack of T se’s fatigue and some hot flashing. However never noticed any post injection particular se’s as posted above.

Quit Lupron as developed resistance.

However just started again as required for Nubeqa(Darolutimide) for which I just received prescription.

3100connecticut profile image
3100connecticut

Bingo. "Especially tired" doesn't begin to describe it. I feel like I've been run over by a truck for several days after a Firmagon shot, and especially tired and sleepy for the rest of the month. But who are you gonna complain to, right?

3100connecticut profile image
3100connecticut

Welcome to the club. I feel like I've been run over by a truck for a few days after a Firmagon shot and especially tired and sleepy the rest of the month. The doctor shrugs and says, ADT side effects. Live with it!

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