What can I expect from my first Lupro... - Advanced Prostate...

Advanced Prostate Cancer

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What can I expect from my first Lupron shot?

Jsbach1953 profile image
79 Replies

I have my first shot scheduled in a week or so, and I'm just wondering how people often (or generally) feel after receiving this injection.

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Jsbach1953 profile image
Jsbach1953
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79 Replies
pjd55d profile image
pjd55d

not much other than the sting of the injection

In my experience, the side effects/ changes are cumulative and happen over a period of months - if not years. Maybe, a little fatigue at first.

I have been on ADT - first Lupron then Eligard for 7 1/2 years - my life/body have changed but the stage 4 cancer has not killed me yet ( they said 5-7 yrs - they were wrong ) and I am glad I am alive and still putting one foot in front of the other and moving in a forward direction.

First injection - not worth spending any stress energy on

Best

JohnInTheMiddle profile image
JohnInTheMiddle

Hi JS. I'm on a different ADT so my experience is not exactly the same. I've been on this metastatically for 2 and 1/2 years. If you can fill out your bio I think that would be helpful for people replying. Are you only on Lupron? Are you metastatic? Surgery or radiation? Other meds planned? Jurisdiction? I'm thinking you were born in 53. Hugs.

Jsbach1953 profile image
Jsbach1953 in reply toJohnInTheMiddle

Diagnosed in late-2018. No treatment of any kind until the last three months (I was diagnosed with Gleason 8 - don't recall the whole score)., I had pain in my left pelvis which finally drove me to take action. I was also feeling energy-less. About three months ago, I met with an oncologist, who said I had mets in my left pelvis and possibly my left rib (after the usual bone and CT scans were performed). She prescrbed Casodex. If there was ever a miracle drug, that (in my experience) has to be it! All pain went away and I resumed working out like I did years ago. I went from 155 to 178 - much of it new muscle. I now look like my usual self and have "near normal" strength. So I'm not overly excited about quitting Casodex and starting Lupron. Especially anticipate losing my newfound strength and youthful energy!

Jsbach1953 profile image
Jsbach1953 in reply toJsbach1953

I was born in 1953. I guess that makes me around 59 or so. :) Math was never my strong point.

doc1947g profile image
doc1947g in reply toJsbach1953

My calculator tell me that 2024 - 1953 = 71.

I am 77 years young and was dianosed in 2020/01/29 with a PSA 20.4 and G(4+3=7)G4.

Jsbach1953 profile image
Jsbach1953 in reply todoc1947g

I hate your calculator! :)

doc1947g profile image
doc1947g in reply toJsbach1953

you should be happy 😆 to still be alive.

I am happy 😊 to see my grandson and granddaughter growing up.

Jsbach1953 profile image
Jsbach1953 in reply todoc1947g

I am happy. I just want to keep in mind that Healthspan and Lifespan are not always the same. I would chose the former any day of the week.

Tommyj2 profile image
Tommyj2 in reply toJsbach1953

Damned if I understand how an anti androgen drug helps to build muscle but I have seen reports…….as to the lupron….dont worry yourself…..unless your fear level of injections makes you hypersensitive to the pain of the prick…..all you will feel is a mildly annoying prick and sensation of the syringe emptying……no actual pain.

Jsbach1953 profile image
Jsbach1953 in reply toTommyj2

Well, it's an androgen receptor inhibitor - that is, it inhibits the androgen receptors on cancer cells. Doesn't lower testosterone in your body.

Lost_Sheep profile image
Lost_Sheep in reply toJsbach1953

Jsbach, are you SURE Lupron is an androgen receptor inhibitor?

“Some antiandrogens work by lowering the body's production of androgens while others block androgen receptors, limiting the body's ability to make use of the androgens produced.”

Refer to: drugs.com/drug-class/antian...

This citation gets more specific about describing the difference between blockers of uptake and blockers of production.

mayoclinic.org/tests-proced...

Huzzah1 profile image
Huzzah1

In addition to what's been said which is spot on - the shot will leave a pretty good sized knot in your butt and it's normal to be sensitive for a few days.

A trick someone else mentioned here which made a big difference - stand next to the table where you're getting the injection, take the weight off of that leg essentially standing on 1 leg. This lets the muscles relax so the fluid, which is very thick, can spread easier. I have also found that having the plunger go in slower works better afterward.

Jsbach1953 profile image
Jsbach1953 in reply toHuzzah1

Thanks for the tip!

TaylorMill profile image
TaylorMill

I have posted my experience in prior threads but will provide a simple summary again of my entire experience but will emphasize the experience with the initial doses.

I was on both Lupron/Eligard for four full years. I was also on Casodex/bicalutamide for four full years also and it was started per standard methodology a week or two ahead of the first Lupron shot.

I experienced no side effects or bad feelings after the initial doses. I had anxiety about it at first -- mainly because others report bad experiences. My worst feelings were from the unnecessary initial anxiety due to others' bad experience as my experience was no problems at any time with any drug side effects. No side effects or bad feelings were experienced for the full 4 year period. My MO did monitor bones and there was some minor change over the 4 year period but nothing of concern.

As an FYI, Lupron and Eligard are the same drug just delivered differently. From memory, I think the distinction is that Eligard is injected slightly under the skin where as Lupron is injected into muscle mass. My MO prescribed Eligard when Lupron was unavailable (a few times during COVID). I received all shots in my shoulder and did alternate them from time to time. Lupron was a non event - I do recall Eligard at least once caused a nump that took a short while to go away.

Again as an FYI, Bicalutamide is the generic name for casodex -- both are oral pills.

Best of luck to you

Jsbach1953 profile image
Jsbach1953

It's weird, but I could swear Bicalutamide has the effect that I would expect from taking steroids! I never expected that. My guess is that my testosterone has risen from 480 to 700 - 800. I'll presumably know soon enough. I'm sure one of my blood tests will measure testosterone (free circulating). Thanks for you summary, Taylor, and your good wishes. Same back to you!

JohnInTheMiddle profile image
JohnInTheMiddle

So in summary, and distressingly, you have metastatic prostate cancer. Fortunately you have an oncologist. I'm just a lay person but it seems you are being undertreated. And this is not a joke. Metastatic prostate cancer and only being treated by ADT? (Prior you had bicalutamide, at first generation AR antagonist.) It's quite likely that there's something I don't understand here.

Jsbach1953 profile image
Jsbach1953 in reply toJohnInTheMiddle

I was certainly undertreated up till three or so months ago! Probably should've had a protatectomy back in 2018. I'm not a big fan of taking tons of drugs and undergoing lots of treatments, clearly, and from what I've read here, I don't think I'll become a fan (and also having two friends who had every treatments and the kitchen sink thrown at them who succumbed in great pain riddled with cancer). In all fairness, I believe some therapy can and has been highly effective. But in the long run, the effects to testosterone-suppression seem pretty off-putting (heart, bone, and immune health compromising - and rarely provide a cure but rather a postponement; I want a cure). Definitely be looking for intermittent ADT. It's also clear that people respond differently to various treatments. My oncologist was certainly surprised at how quickly I responded to Casodex!

JohnInTheMiddle profile image
JohnInTheMiddle in reply toJsbach1953

There is no evidence, from what I can see, that not treating metastatic prostate cancer, except with ADT, will result in anything good.

Certainly, one can live for decades with properly managed non-metastatic prostate cancer. But unfortunately, you no longer fall into that group.

I sympathize with wanting to avoid destructive interventions such as surgery and radiation, and even harsh drugs and chemo. And I avoided at least surgery and radiation myself, but only because my cancer was so advanced. Including to several vertebrae in my spine. I narrowly avoided spinal fracture and loss of mobility. And the triplet regime that I fortunately embarked upon has so far enabled quasi-normal functioning for over 2 years. Without the triplet therapy, my life expectancy was probably a year and a half.

You mentioned intermittent ADT. It's intellectually interesting in terms of evolutionary mathematics and biochemistry. But it is not proven at all. No one knows how to do it consistently that I am aware of. And I'm also not aware of it being done without additional hormone supports such as ARPIs or ARAs.

All things being equal, a decision not to treat or to treat only minimally, in circumstances of metastatic prostate cancer, is on the fringes of responsible decision making. And on balance probably leads to a foreshortened life expectancy.

That's the big picture. In the meantime the discussion here is sort of like looking through a straw at a medical situation. And what we see through that straw is just ADT and what one "feels" about ADT.

Tommyj2 profile image
Tommyj2 in reply toJsbach1953

It doesn’t matter if you are not a “fan” of taking a lot of different drugs……..you are caught between two options….hope for luck leaving it partially treated or do the whole magilla and live a while longer…….if you were not metastatic I’d feel differently about this..but your situation doesn’t leave a lot of non treatment options.

Jsbach1953 profile image
Jsbach1953

Well, there's a good reason you haven't seen counterevidence for ADT - or the near-infinite number of medical, radioactive, and surgical treatment options: virtually no one with a prostate cancer diagnosis avoids those treatments. We're therefore missing a pretty critical piece of evidence - a control group. We don't know how people with excellent diets/lifestyles would fare (once diagnosed with PC) compared with traditional current treatment methods. The medical establishment, of course, assures us that it does know- but that's not possible without that control group. In my view, the past fills the role pretty well: PC and other forms of cancer, as well as heart and autoimmune disease) were relatively rare. People years back were much slimmer, more physically active, and ate very differently from people today. The issue is, as you point out, that once cancer is metastasizing, you're pretty much forced to take drastic action. One thing you will almost never hear about is diet and exercise from your medical professional. They not only know nothing about those subjects, but actually have a profound lack of interest in them. When your life is on the line, your generally are going to follow your doctor's advice. But I think it is a profound mistake to over-treat a disease and not perform research on your own, as opposed to blindly following the medical establishment's dictums. The evidence for intermittent ADT's efficacy seems pretty solid to me. Even my oncologist doesn't dispute that,

ARIES29 profile image
ARIES29

Hi Jsbach, Itermittent ADT worked for me but the PSA always came back up indicating that going off the ADT is giving the cancer a chance to revive. I have been doing that since 2011 after having radiation on prostate & even 2 goes at lutetium.

I had one shot of lupronide in 2011 & never again, I could not stay awake, would go to sleep in middle of a sentence or driving, but that is just me. Lupron seems to be the first thing doctors think of but there are other drugs out there with less SE, Firmagon every month is one. Good Luck with your new life on ADT.

Jsbach1953 profile image
Jsbach1953 in reply toARIES29

My guess (from research) is that my doctor will tie the intermittency to my PSA scores. My dad had sky-high PSA for decades but no one could find any cancer (and they tried repeatedly!") So if I have a genetic predisposition to having a higher than usual PSA, I'm anticipating that my oncologist will recommend against ever coming off Lupron (or its equivalent). ARIES, your non-Lupron treatment seems to be working awfully well for you, considering you were first diagnosed sometime in 2011 (?).. Seems like you have a winning formula...though we can't know how you would've done without radiation and lutetium. Of course, your doctor believes you wouldn't be here without them. He or she might be right. Still, I wonder....

ARIES29 profile image
ARIES29

Like the idiot I was back then I was taking testerone injections & that excellerated the postate cancer I think. These days the PSA is hovering around 1 & I am happy at that, although would be glad to see it go, it aint gonna happen.

Jsbach1953 profile image
Jsbach1953 in reply toARIES29

I believe some urologists have gone out on a limb and recommended testosterone for PC, but they are pretty rare birds (they suggest that testosterone in healthy amounts helps keep young men PC free.). Taking Casodex (have you tried it) has what I imagine to be steroid-like effects. I certainly packed on the muscle while using it, and all my bone pain (left pelvis and rib) disappeared. And Fast. The first night I took it I slept like a baby for the first time in many months. And that has been the case for most the three months I've been on it. More controversially, I've tried small amounts of THC and Cannabis oil at night - really helps keep me asleep, I've found. That marijuana of the Indica variety, which is sleep-inducing. I'm not a big fan of dope - prefer a cold beer or coffee any day - but indica is pretty amazing for sleep.

ARIES29 profile image
ARIES29

Cold beer or coffee, that is my preference also, never tried Cannabis & one time tried marijuana it gave me headaches. Was on cassodex also for months but the headaches & sleepless nights got the best of me. Nubeqa keeps me awake at nights these days & melatonin helps with sleep.

One day soon I hope the oncollogists & urologists will think beyond Lupron as the silver bullet. Lutetium only lasted 2 years for me but I wondered if they would have let me have the third & fourth treatments what would have happened.

Jsbach1953 profile image
Jsbach1953 in reply toARIES29

I suspect it matters when you take Casodex. I've always taken it at night, and it has worked like a charm for sleep. No headaches. But as I mentioned, everyone is different and responds differently. We're all individuals,..except that one guy in the Monty Python movie (Life of Brian).

ARIES29 profile image
ARIES29 in reply toJsbach1953

{Always Look O The Brighter Side Of Life}!!!

Jsbach1953 profile image
Jsbach1953 in reply toARIES29

Exactly!! :-))

mrscruffy profile image
mrscruffy

I get mine in the stomach so little discomfort for about an hour. Stops when I apply ice. Didn't have side effects until about the 9 month mark

KocoPr profile image
KocoPr in reply tomrscruffy

I bet that is when your estrogen E2 went in the tank. Mine was at 9 months. I was worried about bone loss and mental decline. My skin was getting bad with scabs, rash, eczema. It has improved 90 percent while doing BAT. I finally convinced my OC to approve low dose estrogen patch if my E2 hits the tank while on 2 months of Daro/Orgo.

I will always ask for E2 when you get PSA test

mrscruffy profile image
mrscruffy in reply toKocoPr

My SE's never got that bad. I remediated with improved diet and working out.

dans_journey profile image
dans_journey

Unlike some of the others, my experience is quite limited. I was given a single, six-month dose of Eligard two months in advance of salvage radiation treatment.

The side effects that I experienced with the Eligard were mild to moderate fatigue (firing on 6 or 7 cylinders vs. 8); more hair-triggered emotions (tear up listening to songs or watching movies; irritated by idiot drivers); and I noticed my limited chest hair thinning out by about half (I'm already bald so didn't have to worry about that 😂).

Fortunately, I escaped any hot flashes or weight gain.

I suspect some of those may manifest if you're on for a longer period than the six months I was on.

Good luck.

Lost_Sheep profile image
Lost_Sheep

If at all possible, I would opt for Orgovyx (daily oral pill which works faster and stops faster than Lupron and has a superior profile of side effects...or its injectable relative, Firmagon). LHRH antagonists instead of LHRH agonist (Lupron).

Talk to your doctor about the choice (and if your insurance will cover it). Antagonists also do not produce the testosterone surge that agonists do, either.

Jsbach1953 profile image
Jsbach1953 in reply toLost_Sheep

The only problem for me is that Orgovyx is really expensive and apparently isn't covered by my insurance. At least, that was my understanding. I'll talk again to my oncologist and insurance people and see if I'm right about that. Thanks for the suggestion.

Lost_Sheep profile image
Lost_Sheep in reply toJsbach1953

Show this to your oncologist and insurer. Stress the superior side effect profile and the fact that you don't have the testosterone surge with Orgovyx that you get with Lupron, often necessitating an additional drug for the first month.

nejm.org/doi/10.1056/NEJMoa...

Or refer to the PATCH study that clearly demonstrates the superiority of estradiol over Lupron (and is cheaper, too). E2 by injection is my choice and my PSA is 0.018.

One researcher in the 15-year long Phase III study reported, "transdermal estradiol seems to improve hot flushes, improve bone density without compromising cardiovascular safety, and have equal oncologic outcomes. "

urotoday.com/conference-hig...

urotoday.com/categories-med...

Pokerplayer profile image
Pokerplayer

start lifting weights now it causes you to lose muscle mass and walking

EdinBmore profile image
EdinBmore

Check out previous posts here; there are a lot of them that tell of experiences with ADT. Some guys are lucky to have few, if any, side effects other than feeling fatigued and a hot flash or two. Others are not so lucky and feel devastated by the experience. Unfortunately for me, I fell into the latter category. I think I had almost every negative side effect one finds listed in the text books about PCa and its treatment. Hot flashes. Joint pain. Bone crushing fatigue. Wt increase (25 lbs in 3 mos). Loss of muscle mass. Man boobs. Loss of pubic and arm pit hair. Suicidal thoughts. Emotional roller coaster - from anger to tears for no apparent reason. Weird dreams. Genital shrinkage. I'm sure I'm leaving something out but it's been 6 yrs ago and memories fade (thank god). And, for whatever it's worth, I thought the doctors were insensitive assholes. They never asked how I was feeling and they met any complaint I had with a "tsk-tsk," that'll pass. Maybe they're just numb to all of this. And, yes, I exercised my ass off (even hired a personal trainer), walked several miles daily, and "ate right." Basically, to no avail (although one wonders what my experience would have been had I NOT done these things?) I had 3 three month injections and it took almost 18 mos for me to feel anywhere near normal. My T gradually returned to pre-treatment levels (250ish - woo-hoo). In retrospect, I should have yelled at the docs for their lack of care and demanded better. I wish you well with your treatment and hope that you have better luck and experience than I. It was awful and I wouldn't wish it on anyone.

EdinBaltimore

Dont08759 profile image
Dont08759

for me the shot in the butt was no big deal. I had 8 injections over 2 years and other than needle pain it went smoothly. At the time, I thought that sex was a very important part of my life (I have a great wife!), but the libido disappeared at 2 weeks, shorty after that the hot flashes started! I realized I could now identify with my post menopausal sisters and wife. I later told my MO of 35 years (stage C rectal cancer 1989) that it made me a better man! The lethargy slowly sets in, I hardly noticed it! After 2 years, my MO grabbed my pot belly and told me I was going to die of a heart attack before PC killed me! My weight had not changed, as my muscle mass was slowly turning into fat! I started playing pickleball, that helped greatly and I now I have a bunch of new PB friends! I had a 9 month ADT vacation and in June I was put on Orgovyx. It cost me $44/month, I have pretty good insurance. My MO thought that EVERYONE should be on Orgovyx as it is superior to Lupron….

DannyMan profile image
DannyMan

watching this post (and responses) carefully. Just had my first Lutron (3month) injection a week ago today.

Sore a bit the first night - nothing big.

Felt like a million bucks the next couple days (the testosterone surge?). Then, pretty normal. I wonder how I’ll feel next week.

I’ve lifted heavy for years- stopped several months ago with diagnosis, but back to it last week. My eating and sleeping has never been good.

I am committed to making that much better - totally laying off 90%+ of the sugar I used to eat (bern doing that months), now knocking down the salt significantly. Less red meat, more veg/fruit, etc.

Hoping I can be one of the few with very few SE…

We shall see.

Jsbach1953 profile image
Jsbach1953 in reply toDannyMan

I think one of my biggest fears is losing strength/vitality. Of course, I was losing that before my treatment - but under Casodex I've been able to rebuilt my body back to something approximating its usual shape, and I hate the idea of losing that. Yes, I do fear the prospect of getting sick and dying more, but I'm hoping for both physical vitality and life (kind of hard to have one without the other - unless you're having a Near Death Experience ;--). Like you, I enjoy lifting weights and other forms of resistance training (pullups, pushups, dips), and I plan on forcing myself to continue without testosterone. I expect recovery time to be much longer and to have lingering sore muscles much of the time (I have them even with normal testosterone!).

DannyMan profile image
DannyMan in reply toJsbach1953

Being I lifted very heavy for years, I’m used to “managing pain” more and more as I’ve aged - hoping it’s not much different from the longer recovery without test.

Over a week since first 3 month injection - feeling great still.

Wondering if there will be a precipitous crash, or just gradual, or not bad. We all seem to be playing sone form of Russian Roulette.

Jsbach1953 profile image
Jsbach1953 in reply toDannyMan

Pain's one thing, but slight joint injury or overworked muscles stop me. I did several sets of pullups a few days ago and my shoulders are still sore. And that's with testosterone. I have trouble imagining exercising hard and recovering without it. I hope I'm wrong, Danny!

CousinGrandpa profile image
CousinGrandpa

Js, I had my second Lupron injection this week. In the upper butt. Not much effects the first day, second day lump and painful area. It’s about the size of a silver dollar. It was enough to make me sleep on the other side but not painful enough to keep me awake. I have been on Lupron 6 months now and after the first shot fatigue / fog hit me but moderated over time. With the second yesterday I noticed it returned somewhat. Time for coffee! Overall not a bad experience considering it has reduced (along with enzalutamide) my psa down to 0.15. Hopefully it will go below 0.01 in the next 3 months and I’ll get a vacation from it.

As for the butt pain, Tylenol takes care of it.

85236442968 profile image
85236442968

Jsbach1953

Well welcome to the ADT squad.

I have had 2 Lupron injections, and have now been switched to Eligard.

The only initial SE on the Lupron (Intramuscular in Glute) was the injection site for a few days. The Eligard (Subcutaneous in the belly) was less but was noticeable. Both go away within a few days.

It seems like everyone gets side effects at different speeds, some have pretty intense SEs, and some seem to breeze thru.

My personal experience was about 2-3 months in I started having hot flashes. 30 seconds long most of the time, more in evening than morning or thru the day. I had a general fatigue but was also am taking Zytiga/Abiraterone along with the Lupron/Eligard. I do think they both contribute to a general fatigue

I do have the physical side effects on my groin. things shrunk up a bit and were somewhat tender for a while. By wife and I have both agreed and are thankful I am alive and kicking, so while this side effect is somewhat disappointing, it is not a big deal with us. This just has to be accepted as if not, it can work on you and your partner mentally.

The whole ADT thing will rob you of your muscles. This is very quick, and can only be countered with exercise. Both cardio and resistance. I am not a marathoner, so I walk 30 minutes every day in my neighborhood, rain or shine. Never miss a day. Then 3 days a week at gym for resistance. My wife started coming to the gym with me and swimming laps in the pool, so now she has a nice social group in the pool, and we look forward to going to the gym/pool the 3 days a week we go.

The whole ADT thing did impact my blood pressure and I had quite a separate journey on BP control. The only thing I will give for advice is if this happens get a Cardiologist who is associated with the Cancer Center you are going to. The outcome will be more positive and quicker that the hometown Cardiologist.

We have successfully changed our life styles to accommodate the beast and are winning that battle.

Good luck on your journey, the ADT is some times disappointing and annoying but it does work as I have been undetectable for over 10 months.

RMontana profile image
RMontana

Hello, it’s very hard to be certain how to reply to you because your bio doesn’t have any information as to what your conditions were at the time of diagnosis or what treatments you may have received. So, forgive me if this is redundant or not necessary. My concern is that, in many cases, men are just not told what will happen to them when they receive hormone treatment, or what the impacts are of living without testosterone. My main goal is to inform you or the wider audience that may not know.

Hormone treatment is a definite beneficial avenue for some men that require abatement of the progression of the disease while they seek additional treatment, or suspension of growth of cancer cells after same. It is during the treatment that changes to your body happen that you need to be aware of. This podcast is unique in my perspective because it tells you the good the bad and the ugly. My feeling has always been that if you need ADT, if you can benefit from ADT then take ADT. But, do so with your eyes wide open. If you are concerned about the impact that it’s going to have then you need to take action sooner rather than later. That’s good news.

There is action that you can take, which will mitigate, or reduce the impacts that hormone treatment will have. But you have to know what those impacts are going to be so that you can make an informed decision and act now. If you wait, you can’t rewind this thing; there’s no going back. There are voices that will chime in and say that nothing happened to them after ADT. But they are exceptions and you can’t expect every apple to land in the same place. Prepare for the worst and be thankful for the best outcomes.

…if you want more information on testosterone and life without it, there’s plenty on my site. I have posted a lot about the subject. I always say that life is precious and it’s so precious that it’s measured by the cost we pay to preserve it. So do what you have to stay healthy but understand what is happening, or going to happen, as you do it. Good luck.

healthunlocked.com/active-s...

Yzinger profile image
Yzinger

Just had my 5th shot yesterday. Localized pain at injection site for few days. I had bad experience on my 1st shot. In shoulder and was really really sore for several days. Butt is much better

Also I usually get a return of hot flashes, otherwise not too bad. Better than alternative 😀

Professorgary profile image
Professorgary in reply toYzinger

I had the same experience. Shots in arm were bothersome for weeks, shot in but barely noticeable.

bldn10 profile image
bldn10

I know my experience was not typical but I had 2 3-month shots in the arm and never felt a thing afterwards. Not a single hot flash, no discernible fatigue, nothing.

Jsbach1953 profile image
Jsbach1953

I want to say a general "THANKS!" to everyone who responded. I've always been a bit leery of this group because of what I perceived as a somewhat doom and gloom perspective (actually, it seems to be exactly the opposite on a more dispassionate reading). I detest the idea of taking drugs that I mostly struggle to pronounce and that surely have compromising effects on one's overall health, but such is life, I guess.

Kaliber profile image
Kaliber in reply toJsbach1953

The very basic nature of aPCa is “ doom & gloom “ , ….. still read all the QOL posts and try not to be surprised when you see us croakers “ smok’in & jok’in “ about our circumstances and fate. To some it seems crass and a bit disrespectful but if you are an actual croaker , it’s a different perspective. You know it’s got to be hard and not everyone is “ up “ at the same time …but we try to bust the d&g as much as possible. Seems like a “ lot “ of the wry humor goes over the heads of many. When you are on here hurting, or perhaps needing a little camaraderie and someone/s are wisecracking …. It’s easily missed or misconstrued.

Ok J-o-h-n …..get to work buddy …..

It’s all good when you are still smell’in the daisies, instead of pushing them up brother. Feel to crack wise yourself, I’ll bet there will be a “ bunch “ joining you.

Just say’in

❤️❤️❤️

Jsbach1953 profile image
Jsbach1953 in reply toKaliber

I'd be worried if I could smell the daisies while pushing them up, brother. My big ambition is to die with a smile and a (probably tawdry) joke on my lips... My son couldn't believe I was cracking jokes to my doctors. My humor sometimes gets me in trouble...probably something that's happened to you, Kal.

Kaliber profile image
Kaliber in reply toJsbach1953

rotflol ….. oh yea, I’ve rubbed my share of guys the wrong way. Even if we weren’t sick, we’d still be geriatrics , and grumpy old men. lol. I try to add useful information from my own experience, and hopefully try to elevate the doom and gloom if possible. There is nothing good about terminal cancer … but people depressed, scared and just lonely come here ….here we have a bunch of good spirited croakers that can provide camaraderie and emotional support . We need to try to help our fellow croakers in need , no one gets it like we do.

❤️❤️❤️

PELHA profile image
PELHA

Husband started these regularly earlier this year. No bad side effects beyond some fatigue and hot flashes (he is now on low-dose estrogen patches that have eliminated the latter). But here’s the thing, it does a number on your body shape. Was shocking how fast he developed a little tummy which he never had before. So even though it hasn’t really changed that, it is important to do weight bearing exercise as the Lupron is hard on the bones. Good luck! This and Erleada still bringing his PSA down.

Jsbach1953 profile image
Jsbach1953 in reply toPELHA

Thanks, PELHA. Is your husband on any form of exercise routine (e.g., resistance training)?

PELHA profile image
PELHA in reply toJsbach1953

Weights twice a week. Otherwise just gardening, pickleball, walks, not a lot. Very frisky still (if you know what I mean) for a man with no testosterone!!! So maybe that’s some cardio! But he does not drink and disciplined to eat small amounts. He’s weighed the same all since high school until he started the Lupron and an immediate ten pound gain. He’s had to start calcium supplements and twice yearly Prolia shots to counteract bone loss from the Lupron.

Jsbach1953 profile image
Jsbach1953 in reply toPELHA

Gardening!? Arrragh., that's way too stressful for my poor body! :)

Cenerus profile image
Cenerus

You won't notice anything. The injection itself is somewhat unpleasant because the stuff is very viscous and the injection takes about 30 seconds for them to slowly push it into either your belly or your arm. The side effects take weeks to start manifesting. The first will likely be hot flashes then some fatigue. But it took me over a month before I noticed anything at all.

Jsbach1953 profile image
Jsbach1953

Thanks, C. Interesting. I'm almost looking forward to this little science experiment I'm about to begin. I will let everyone know what happened. (Assuming anyone's curious!)

SteveTheJ profile image
SteveTheJ

No big deal. Your testosterone should fall gradually and take months to recover if you stop it later. However of course, everyone is different. Lupron is better than cancer.

London441 profile image
London441

Effects shortly after the shot are swelling etc. someone said viscous, that’s a fact. Naturally that can cause a reaction for various reasons.

The actual side effects from the drug are well documented and you know them by now. For most they don’t appear for several months but as you see everyone is a bit different.

Casodex was good times for you, I get that. Now, should you choose ADT, you will be dealing with extreme testosterone suppression sides, for which the antidote is very clear: weight training and cardiovascular exercise. You already knew this too.

All I can advise is to try to adjust to working harder for lesser results with a smile on your face, because that’s what you’ll be getting. Restrict calories as well if you’re willing too, for metabolism slows noticeably. All very manageable if you maintain your good habits. Great luck to you!

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

A bill from the doctor.

Note: Please update your bio. Thank you. (It's voluntary and will be helpful to you and to us).

Good Luck, Good Health and Good Humor.

j-o-h-n

Jsbach1953 profile image
Jsbach1953 in reply toj-o-h-n

I posted it here and in an original post a while back. I'm guessing I can post a biography somewhere here? Anyhow, John, it's not much of a story. Was diagnosed PC in late-2018. No treatment. A few months ago, I noticed swelling in my left pelvis and also seemed to be running on about 4/8 cylinders. Had a CT (abdominal) and a full-body bone scan, around three months ago. My oncologist said I had cancer in my hip bone and possibly (a small spot) on my left rib. She prescribed Casodex. I've been on it for nearly three months and have gained about 20 lbs. and feel great. Swelling went down to undetectable in my left hip. Next week, the doc will be administering the shot, which is the subject of this thread, and will also have me do some blood tests. I doubt the blood tests will alter the planned Lupron injection.

j-o-h-n profile image
j-o-h-n in reply toJsbach1953

Thanks for the quick response.. Just copy and paste your post above (to me) to your bio. Easy Peasy....... same as your Lupron injection also Easy Peasy. Ask for shot in your left or right butt. Alternate every 3 months. It's just a sting and no issues later. Been on Lupron for centuries (and still on) and also on Casodex until taken off by my M.O. who switched it to Nubeqa in April 2023. Fight the bastards...

Good Luck, Good Health and Good Humor.

j-o-h-n

SillyUserName2 profile image
SillyUserName2

I started glutathione (Natural Factors) before the first injection last year and actually have more strength and endurance than I had before leuprolide. This summer I pedaled my bike over 600 miles in the summer. So, don’t worry!

Jsbach1953 profile image
Jsbach1953 in reply toSillyUserName2

Glutathione? Natural Factors? That was your main supplement? One problem for me is that I'm always experimenting with supplements/foods and that makes it difficult to isolate what's causing a positive (or negative) result. I tried NMN months ago and felt great...and then, of course, the FDA, in it's infinite wisdom, banned it as an over-the-counter drug,

Jsbach1953 profile image
Jsbach1953 in reply toSillyUserName2

I ordered some Natural Factors glut! Thanks, brother!

SillyUserName2 profile image
SillyUserName2 in reply toJsbach1953

My pleasure! I take quite a few herbs and supplements, but I felt the effects of the “glut” quite quickly. Most of my herbs are for stimulating mitochondria. Another supplement that you can try if you want piles of energy, is methylene blue. Begin with a small dose (1/4mg). MB kills cancer and is a nootropic ( stimulates the brain). I’m on Lupron and Zytiga, but I would never know it. I was just playing soccer with my grandkids and now I’m going for a 3 mile walk. I don’t know if these will help me kill the cancer, but for the most part, I have piles of energy, a sharp mind, plus feel strong and capable.

Jsbach1953 profile image
Jsbach1953 in reply toSillyUserName2

I'm already on it! I'm trying some other stuff, too, like Fenbendazole, Ivermectin, and turmeric... You may be an outlier, SillyUserName. I don't know your age, but I'd guess you're somewhere in the 90 percentile range. However, your health may have something to do with your embracing health alternatives. Most PC sufferers just follow the doc's advice (today, I asked my oncologist about NMN, She replied, "I've never heard of it"). Good to keep in mind that doctors know virtually nothing about nutrition or any of the latest possible anti-cancer supplements. In fact, they're oddly indifferent or skeptical regarding such knowledge. Can you imagine what would happen to their livelihoods if people starting eating healthy stuff, avoiding crap food, and exercising regularly? I think a lot of cancer docs would be out of business.

SillyUserName2 profile image
SillyUserName2 in reply toJsbach1953

I don’t know how I ended up with sillyusername, but my name is Dave and I’m 68 years old. I stay very active. I take plenty of quercetin, pectasol, green tea, sulforophane, african plum and more. I have been considering taking fenben and iver. Have they helped you?

Jsbach1953 profile image
Jsbach1953 in reply toSillyUserName2

The only things that I noticed making an obvious difference are NMN and Casodex. Maybe five months ago, I tried NMN. The surge of energy and sense of well-being were great. I felt like someone lifted a cloud from me (though I didn't see any improvement in my left pelvis swelling; at the time, I suspected it could be cancer from my prostate, but I wasn't sure). Anyhow, the FDA, in its great compassion and wisdom, banned NMN as an over-the-counter supplement (I assume because someone's wallet was threatened by keeping it available to people?). A few weeks after my NMN supply ran out, the bad symptoms returned. After that, in sheer desperation, I finally did something intelligent and consulted a doctor. ;/

SillyUserName2 profile image
SillyUserName2 in reply toJsbach1953

I began with a radiation oncologist. After I was half dead, I avoided oncologists for a year. Then I went back to a medical oncologist and that has been much better. Don’t know if he’ll save me. I was putting my chips on fenben and Iver for the near future. But it’s possible that these are more about fairly tales than facts.

Jsbach1953 profile image
Jsbach1953 in reply toSillyUserName2

Well, there's solid research, I think, for Ivermectin. There's some for Fenben, too. The problem is that if many, many things affect cancer cells in vitro, but getting them to work on your body in real life is a different issue. I'm confident that diet and lifestyle (exercise, good sleep, positive attitude, etc.) has a preventative and curative value. That said, none of my alternative therapies worked in any way that I could determine. So, I think we're in agreement that the wisest course is to consult with a doctor - hopefully an intelligent, informed, and skilled one. :) Looking to doctors for nutritional advice is generally a fool's errand: they (in general) don't care or believe in anything outside their toolbox. Though one of the nurses suggeste Fenben to me during my visit on Tuesday!

Jsbach1953 profile image
Jsbach1953 in reply toJsbach1953

P.S. I was "half-dead," too. Felt lousy and weighed 155 lbs. (my normal weight is around 180). After three months of Casodex and resistance training and regular walks (about 2 miles a day), my weight at Tuesday's measure was 178. So yeah, I'm a fan of Casodex. I only wish the Big Pharmaceutical that makes Casodex would pay me to promote it! :)

SillyUserName2 profile image
SillyUserName2 in reply toJsbach1953

I share your sentiments completely. I have taken so many integrative medicine approaches, including GC-MAF. For all the thousands of studies in IM, I haven't seen anything measurable. The best that I have is how good I feel. That's better than the alternative. But, in the end, I would like to kill the beast! I'll give fenben and iver a try in the next few months. Hopefully, they won't disappoint. Living in Canada, all my meds are 100% covered. The down side is that, there is a process of the meds that I have to take, starting with apalutamide. If that fails, then I can move to abiraterone. I failed apalutamide terribly, but abiraterone has been great!

Jsbach1953 profile image
Jsbach1953 in reply toSillyUserName2

I plan to try "fringe" solutions until the numbers tell me they aren't helping - and the alterative treatments don't mess up kidneys, liver, heart, etc. So as long as I feel good and the numbers support my feelings, I will experiment. Right now I'm experimenting with DMSO and Ivermectin (taking the ivermectin straight into the idenfitfied tumor areas (though right now I can no longer detect anything unusual in my left pelvis - it was painful and bulging before), and also try DMSOing with Ivermetin on m prostate. I['ve tried this twice, and in both cases I felt pretty distinct sensations that weren't entirely pleasant but not long-lasting. We shall see. Hard to know what it's doing when I can't detect the pelvic swelling...

Peealot profile image
Peealot

I experience pain at the injection site for three days following each injection. While it hurts, it isn’t debilitating. You’ll be fine.

Jsbach1953 profile image
Jsbach1953

My follow-up exam today changed my oncologist's mind about injecting me with Lupron today. I'm so disappointed! ;) Seriously, I told her that I thought my PSA would be way down (she said it was so high - over 500 - that they couldn't measure it), and my testosterone was WAY up. My testosterone was 953. PSA: 9. She said that if my PSA tested 100 or less, she'd hold off on Lupron and keep me on Casodex. She said "Your testosterone should be way down on Casodex, and I doubt very much your PSA will be under 100." I won our bet on both counts! :))

Jsbach1953 profile image
Jsbach1953 in reply toJsbach1953

Also, she took one look at me and wondered out loud "I wonder if we should change things when you are building up like this." Paraphrasing.

SillyUserName2 profile image
SillyUserName2 in reply toJsbach1953

Sounds like your oncologist doesn't know what she is doing. Casodex will only block T receptors - and it doesn't do a good job of that either. Against my radiation oncologists's wishes for rejecting Lupron, I opted to be on Casodex for a year. Following the radiation, I was so sick that I was afraid to shut down my T. Meanwhile, with all that T circulating around, my body couldn't see the T, only the estrogen that T converts to. I grew sizeable breasts, which, being an athletic guy, I found to be disgusting. Your oncologist has got to get your T shut down. Time for a second opinion. There are plenty of people with PSAs in the thousands, who had huge drops in PSA following leuprolide.

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