Your Lupron experience...: I've been on... - Advanced Prostate...

Advanced Prostate Cancer

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Your Lupron experience...

bean1008 profile image
30 Replies

I've been on the 3 month Lupron for a year now and have detected a pattern. The first five days or so I feel okay but weeks 2 and 3 I feel like crap. Easily fatigued, off-balance and just a big lump in my recliner. Thank the gods for Netflix. Anyone else have a similar experience? Best wishes to all!!

30 Replies
Burk profile image
Burk

My one-year ADT anniversary was on Sept 26. I'm on the 6m Lupron Depot. Next shot due Jan 4. I'm wondering why some do 3m and others 6m. I'm guessing that the 6m shot may give a more consistent delivery. For me the SE do not seem to change much over the course of the 6m except that I feel a little more normal toward the end each session. I did bump my next appt off till after Christmas so that I would not be feeling the Lupron slump over the Christmas holiday.

Some of the SE are psychological. Remain active. Think positive. Count your blessings and may the joy of Christmas be yours.

bean1008 profile image
bean1008 in reply to Burk

I’ve always wondered how the oncologists decide three months or six months. One month would be a bother for most I’d think. I’m going to ask my next visit!

GoBucks profile image
GoBucks

I do 6 month shots. Started November 2017. My first 7 lupron shots all gave me the "lupron flu" on day 3,4, or 5 after the shot. Extreme fatigue and I sleep when it hits. Gone after 24-36 hours. My last shot was eligard. No "flu". Weird.

bean1008 profile image
bean1008 in reply to GoBucks

Interesting! Hope the eligard results are good!

Lieto55 profile image
Lieto55 in reply to bean1008

I just started the 3 mo Eligard on Sept 14 (which was preceded with Bicalutimide for a month). I start Zytiga this December along with a reapp of Eligard (Stage 4 but caught early with the Ga68 PET/PSMA. We declared BCR when PSA hit .2ng/ml, and at start of treatment PSA was .28ng/ml.)

I am only just now getting the dreaded flushes, I thought I'd been lucky without them. Fatigue hasn't been a problem but I've been taking American Ginseng and drinking green tea a bit. Working out with TRX and an active german shepherd. Lots of walking. Lots of hydration.

At the start I've been hard at losing weight/keeping the muscle mass - whey protein shakes with cashews ground up (branch chain aminos), pescaterian/med diet otherwise. With winter and the Zytiga (which has me nervous), I'm adding some HIIT on the rower. So, the next shot of Lupron will tell me if I was just lucky with fatigue on the first shot. I set a ridiculous goal of getting a six-pack just to keep things challenging - while I've lost 20 lbs over the last 4 months and appear to be as strong, the six-pack is still a stretch goal.

I found this article helpful: ncbi.nlm.nih.gov/pmc/articl...

Upward!

Paul

Jvaughan0 profile image
Jvaughan0

If only Netflix had anything worth watching... mindless murders, meaningless betrayals and raunchy escapades with disjointed plot lines... and those are the comedies. Of course, there are exceptions. I am exploring my second long term relationship with six-month lupron injections. The first time was four years ago. I am also stepping out with a radiation machine five days a week until mid January. I think there is a difference between being tired and feeling fatigue. Fatigue is more like time released exhaustion. I find myself good for about two hours a day before I reach my energy ceiling. I walk a few miles each day, use some light weights and most days get around to doing a few chores on the small farm where I live. I tend to be a construction project and outdoors sort of bookworm. At least I still have energy for audiobooks on hot flash nights, and Youtube keeps me vicariously building and camping from the comfort of my recliner.

bean1008 profile image
bean1008 in reply to Jvaughan0

I’ve just discovered podcasts and am liking those. And I dusted off my old Nintendo system which has been fun going down memory lane! Good luck with the radiation!

Lieto55 profile image
Lieto55 in reply to Jvaughan0

I just completed 25x IMRT on the PLNs and an SBRT to hit a hot spot on the T10 vertebrate (or make a hot spot a good bit hotter 😀). IMHO you are spot on re: Fatigue vs Tired. The IMRT went fine the first week or so, but starting the second week and amplifying until done, two hours after treatment I needed a soft place to land or I'd crash where I stood. A lot was due to the oxidative load I bet, and my diet got restricted with the IMRT process. But I'd close eyes for an hour and I'd be back - that's tired in my book. Fatigue I happily haven't experienced, unless it's nephew is procrastination and I do have more of that than I remember having prior to BCR and treatments.

mrscruffy profile image
mrscruffy

I have been on Lupron for 5 1/2 years and pretty much every SE. I don't however nor have I ever had fatigue issues. I am in the gym 3 days a week and home a couple of days of cardio. I workouts with a partner so we both have accountability. I think with the workouts and supplements I am warding off fatigue

London441 profile image
London441

3 words, always the same from me Mr Bean: Weight Bearing Exercise

Any fatigue you get from these drugs that seems based on a timeline from injection is usually psychological. Same with so-called differences between Lupron/Eligard. They are the same drug, no matter what you hear. 3 vs 6 month shots not significant either..

It’s the sarcopenia that is the source of the fatigue, specifically the muscle wasting. More movement and less recliner!

Especially, lift weights, or use bands, calisthenics etc if you are able, the more the merrier. It will make more of a difference in how you feel than the rest of that stuff combined.

tennis8285 profile image
tennis8285

I agree with London441. If I'm not playing tennis, then I try to do a combination weights/aerobic workout almost everyday. My main side affect from the eligard is low red blood cell count which limits my endurance but does not yet hinder my daily lifestyle. I have not yet found a solution for the low RBC but other people on this forum seem to have had some success with diet changes. I am mostly vegetarian but I honestly don't believe that is a problem. In fact, I believe it is a plus for overall health. Other people disagree as mentioned in other posts. Think overall long-term health. I am also on keytruda with minimal side effects. However, diarrhea, gas and strong urgency to defecate dictate that the first part of my mornings are spent close to a bathroom. Take care.

EdinBmore profile image
EdinBmore

I opted for 3 mo injections (doc didn't care) for the simple reason that it made me feel more in control of the situation; I told myself that I could endure 3 mos of almost anything. LOL Btw, I had almost every SE possible; it was a horrible experience for me (I am so envious of those men here who seem to shrug it off with "what's the big deal?"). For whatever it's worth, the only thing that seemed to help me through this experience was exercise. I hired a trainer and was at the gym 6 days a wk. I'm not sure that it made any difference physically but it helped with my sense of purpose, control and I seemed in better spirits. Oh, some lingering SEs: wt gain, loss of muscle mass, genital shrinkage, and so on. Good luck to you

ppulatie profile image
ppulatie

Yeah, about the same here. But with Xtandi, it is hard to tell. Next dose of Lupron and Zometa on Dec 20. Means I can get out of cooking Christmas dinner. Let the wife and son handle it since I do all the other cooking.

TylexGP profile image
TylexGP

Hey Bean,

Many will advocate excercise which I agree works. What works best for me is to keep moving being a walk, rearranging my workshop bringing in wood for the wood stove and much to my wife’s surprise dusting and sweeping. I don’t have a formal excercise program but I keep moving which helps me. May you find what works for you.

Boywonder56 profile image
Boywonder56

4.5 years....actually...as soon as i get new dose....the merry go round starts back up...like a shade goes down behind eye lids...and i am back in the high life again...found hitting the vape stick helos with getting me going

CAMPSOUPS profile image
CAMPSOUPS in reply to Boywonder56

Yep. Sativa dominant strains do it. "Puts some pep back in the step".And lifts that shade that you mentioned.

Boywonder56 profile image
Boywonder56 in reply to CAMPSOUPS

Exactly i have a new mexico card....so i go with tangee strain...or maui wowie...just cant get " one toke over the line ....sweet jesus"...

CAMPSOUPS profile image
CAMPSOUPS in reply to Boywonder56

Thanks for the heads up on Tangee. I put one guys review of it down below. I've been onto a bunch of different ones now that so many choices. Diesel, Jack Herrera etc.

Yea so many choices now. In my life it started with 4 finger bag about 10 or so dollars with seeds and stems.

Then names started like Acapulco Gold, etc.

Then the 80's with Sensimilla.

Speaking of:

No stems no seeds that you don't need.

Acapulco Gold is badass weed. (from New Riders of the Purple Sage or Frank Zappa, can't remember).

TANGEE review:

It's a creeper! Took 10+ minutes before full effects became really noticeable. Extremely clear-headed and capable. The sativa raciness in your chest feels like juicy fruit (not the gum lol). It's got a fizzy tingle; like seltzer water carbonation. Entire body's noticeably relaxed and totally at ease. Strong, feel good medicative powers there. Very cool, zen-like head space. Starting to feel motivated and creative. Ease of focus and clarity make it great for working. Less a "gone" high and more of a distant one. Perfect for day use, getting stuff done, making art, and loving nature. Seriously, make an effort to go outside. You'll be blown away by the inherent beauty of nature just like tripping on shrooms. Similarly, it's not the most stable high, with some edginess that makes it feel like an adventure. Mostly uplifting and for a long time. A slight numbing helps lower social inhibitions while the shroomy emotional state connects you with people deeply. If any strain should have it's flavor commended, it must be this one! It stupefyingly tastes like tangerines. Not oranges, not "citrus", just straight motherfucking tangerines. Unbelievable.

Boywonder56 profile image
Boywonder56 in reply to CAMPSOUPS

Easier to get in colorado...i use a pax pen ....take a small pod...the jack herrara is comperable ...i get that in nm....but the tastte of the tangee is incredible...actually your quote was from firesign theatre....hey mother hey others were the pill brothers...theres good drugs and bad drugs and hey brothers were gonna do some good ones now.....

CAMPSOUPS profile image
CAMPSOUPS in reply to Boywonder56

firesign theatre. Crazy you remember them. One time hanging out with friends and Firesign was put on the turntable I laughed till I fell off the couch.

"Porky Tire Eater " ha.

Boywonder56 profile image
Boywonder56 in reply to CAMPSOUPS

I have some on my spotify....that line is from high school madness......more science for more science high....The other us....dont crush that dwarf...hand me the pliers...proctor and bergman...think they were precursors to national lampoon at harvard?

CAMPSOUPS profile image
CAMPSOUPS in reply to Boywonder56

Hilarious. I should look it up on my Spotify. A trip down memory lane.Yep in High School the older kids turned us onto them.

CAMPSOUPS profile image
CAMPSOUPS in reply to Boywonder56

I still like flower above all but keep some vapes on hand for the convenience.

Hailwood profile image
Hailwood

I'm now at 1 year in with Lupron/Erleada...shrunken love nuts, no libido and some fatigue, but I continue to work full time. I take Calcium/Vit D as well as an Aleve in the morning and after replacing forks and tyres on my motorcycles, I feel like I've been 15 rounds with Mohammed Ali. But I'm alive and otherwise well

Boywonder56 profile image
Boywonder56 in reply to Hailwood

Heard that i replaced lower control arms on wifes lexus.......i was wore out for 2 days....

Fastingguy profile image
Fastingguy

My reaction is so #psychological that i had to go to wheelchair, then walker, then cane, finally free style after about a month last time. I have been getting physical therapy so if the exercise theory is valid I should do better next time. I get my shots every 6 mo; also take Xtandi. I am also on oxygen therapy for pulmonary fibrosis and have lower vertebrae degeneration so those might be factors, but five months out of six I can shuffle around okay unassisted. After the injection I am invalid.

ARIES29 profile image
ARIES29

My personal experience with Lupron was not good at all, for 3 months I just sat there & dozed off in mid sentence sometimes. Even when driving I would go to sleep.I do not think anybody on this treatment should be allowed to operate machinery.

After 3 months they recomended casodex which was better but would give me headaches so out they went also.

Now enjoying life on Firmagon monthly, hot flushes, no libodo, fatigue etc but working out helps.

Keep on fighting the Beast!!!

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

Just big T's, little B's, small D, many F's and no L. (but humor way up the wazoo)....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/02/2021 6:15 PM EST

timotur profile image
timotur

I did 1-month shots of Lupron for 18 months to try to get a lower mean concentration of Lupron, and not depend on the release agent in the longer doses-- had the usual muscle fatigue/loss and after one year-- joint pain. DEXA scan showed bone density was lowered from -1.8 to -2.2 during that time. Exercise is important as mentioned above-- do as much as you can.

bean1008 profile image
bean1008

Thank you ALL for your replies! I’ve been away for a few days and I’m just getting caught up on all of the responses. Best wishes to everyone and hang in there!

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