Let's talk about Lupron.: diagnosed... - Advanced Prostate...

Advanced Prostate Cancer

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Let's talk about Lupron.

FulThrotl profile image
89 Replies

diagnosed gleason 4+4 las july

PSA peaked at 33.5

showed up in right scapula.

urologist and oncologist called it stage 4.

went screaming vegan. remain living vegan, not willing vegan.

it's not much fun. my idea of a good time is smoked filet mignon. i'm not all that enamored with nothing but veggies.

PSA dropped from 33.5 to 1.1 in four weeks, before starting treatment.

28 radiation treatments. they microwaved my chicken thoroughly. :-/

PSA at end of radiation was 0.05, before lupron shot.

six month lupron shot 12-29-21

i'm due for a second shot tuesday. i don't want to take it. here is why:

PSA is currently 0.04

lupron is seriously fucking me up. here is how....

muscle wasting. hips, shoulders, chest. went from being able to leg press 800 lbs, to not being able to stand up from squats.

severe foot neuropathy. balance affected. when it's really bad, can't feel if i am wearing white athletic socks or not.

i can't walk more than a mile on level ground.

i am having chronic hip pain, that is debilitating.

all of this in the last three months. the first three months were not that bad.

here is what i want to do... i want to test monthly, or bi monthly, and see if the PSA goes up at all before doing a second shot. if this shit keeps going at the rate it is currently going, i'm gonna be an invalid.

i've gained 25 lbs and have hot flashes. i don't give a crap about that. it's the debilitation in the other areas that worry me.

what would you guys do? wait and see before the next shot, or make a down payment on a wheelchair?

thanks for feedback. tuesday is decision day.

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FulThrotl
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6357axbz profile image
6357axbz

This is the first time I’ve heard of a PCa oncologist order a patient on a vegan diet.

FulThrotl profile image
FulThrotl in reply to 6357axbz

he didn't. i did it, the day i got the biopsy report. long story, but i became a vegan in about 4 hours. i had nothing to lose. if it didn't work, i can go back to double doubles. the shit worked. the sucky part is, i don't like veggies much. i like stage 4 cancer less, however.

DaveBSD profile image
DaveBSD in reply to FulThrotl

I did exactly what you did as far as going vegan, and my diagnosis was almost exactly like yours - 4+4, PSA 27. My vegan diet is a bit heavy on tomatoes, nuts, grapes, apples, soy and broccoli, white button mushrooms, garlic and onions. I have an MRI and bone scan coming up and my first meeting with the urologist is July 7. I'm hoping the course of treatment isn't too drastic but I'll do what I need.

Tall_Allen profile image
Tall_Allen

There is no evidence that a vegan diet is of any use. There is no evidence that the occasional filet mignon will hurt you. It is enough that the drugs are beating you up without you doing it too. That said, you will put on non-lean weight and risk metabolic syndrome if you continue to intake the same number of calories you did before Lupron.

Your PSA is only that low because of the Lupron. Without it, the metastases will spread like wildfire.

FulThrotl profile image
FulThrotl in reply to Tall_Allen

my PSA went that low BEFORE i had any lupron.

i was testing all the way down, twice a week.

it took ten days to tip over, and it dropped from 25 to 11 in FOUR DAYS.

i had never had lupron in my body at that time, nor any radiation or chemo.

diet and meditation was all i was doing at that point in time.

lupron, in six months, changed my PSA from 0.05 to 0.04.

Tall_Allen profile image
Tall_Allen in reply to FulThrotl

Are you saying your PSA became undetectable before radiation? I call that "treating PSA" instead of the cancer.

FulThrotl profile image
FulThrotl in reply to Tall_Allen

no. if you read what i wrote, my PSA went from a peak of 33.5 to 1.1 in four weeks, without any treatment other than diet and meditation.

at this point, feel free to call it anything you wish. you've told me repeatedly that what i'm saying can't happen. i've gotten some useful information from here that is helpful, and for that i'm grateful. your input wasn't among them, but there you go.

London441 profile image
London441 in reply to FulThrotl

Good diet and meditation are beautiful, life giving choices. They do not cause PSA to drop from 33 to 1 in a month, as attractive as that sounds.

You are in a tough spot, one we all face on ADT. Either stay the course and work your way out of your deconditioning through cardiovascular and strength training exercise or stop the ADT and rely on your vegan diet, meditation and the choice of a endless number of supplements and alternative therapies to roll the dice with the disease.

Men do this all the time, you have plenty of company. I’m not claiming it won’t work, although with stage 4 it’s more than unlikely.

Still it’s your choice big style. But one thing is certain: stopping exercise due to the side effects of ADT is the worst decision you can make. There are no injuries you can’t work around if you’re willing. Your neuropathy, your joint pain, all of it.

In fact, I can only encourage you to find a way to start getting back into shape regardless of your path. To just blithely blame the Lupron for your poor physical condition and see quitting it as your only solution is not a plan.

epfj3333 profile image
epfj3333 in reply to FulThrotl

Sounds to me like your mind is made up. Continue stuffing yourself with vegetables, skip the treatment that has been proven to work and wait until it's too late and your cancer spreads.

lewicki profile image
lewicki

Amen . Ad a shot of Kentucky whiskey.

FulThrotl profile image
FulThrotl in reply to lewicki

i don't smoke, and i'm 38 years sober. i'll go read other replies.

lewicki profile image
lewicki in reply to FulThrotl

At 81 years old and fighting Pca for 22 years I think I deserve a shot now and then.

Echotango51 profile image
Echotango51 in reply to lewicki

Damn, yes you do!!!!!

London441 profile image
London441 in reply to FulThrotl

The whiskey, cigars and barbecue may not be healthy choices, but quitting Lupron because you don’t want to treat the side effects is a lot worse.

AlanMeyer profile image
AlanMeyer

Hello Fulthrotl,

You wrote:

> PSA dropped from 33.5 to 1.1 in four weeks, before starting treatment.

Surely you didn't mean that the vegan diet brought your PSA that low. As Tall_Allen said, it had to be the Lupron.

Here are my suggestions regarding your questions:

1. Intermittent androgen deprivation.

The practice of alternating between periods of ADT on and off has been studied extensively. At one time it was hoped that intermittent ADT would prolong life more than continuous treatment but, to the best of my knowledge, that didn't happen. it doesn't produce a better cancer outcome than continuous ADT but, for some patients, it doesn't make it worse, or makes it only a little worse. I'm not an expert on this (or on any cancer topics) but my recollection is that it works best for patients that have a long period of excellent response to ADT, often interpreted as one year on ADT with PSA extremely low or undetectable. But don't take my word for it. Search Google or Pubmed ( pubmed.ncbi.nlm.nih.gov/ ) for:

intermittent androgen deprivation for prostate cancer

or:

intermittent vs continuous androgen deprivation for prostate cancer

and read some of the articles, or at least the abstracts.

2. Debilitation.

This is a serious problem with ADT. As I understand it, the main cause is debilitation of the mitochondria, the organelles inside our cells that use food to produce energized molecules (adenosine triphosphate - ATP) that activate muscles. There are some experimental drug treatments for this but the one and only treatment that I'm aware of that is really known to work is exercise.

When I was treated at age 57-58, I had been jogging on a treadmill for four miles in 36 minutes (I never was a great runner). I continued working on the treadmill while on Lupron even though I had to drop down to one mile in eleven minutes. I also kept up my pushups, situps, and some other exercises. The result was that I was able to continue my work at an office job every day without pooping out, and was able to go on 5-6 mile hikes in hilly park grounds without being overcome by fatigue. I tried to get an extra hour of sleep every day too and I think that helped.

If I were you I'd talk to your doctor about this but, unless he thinks you're a good candidate for intermittent therapy, I think I'd take the shot - nasty as it is - but maybe a shorter dose (see below)

If you're hoping for a cure or long term remission, and your oncologist thinks that's possible, you don't want to give that up just to get some temporary relief. The first three months of treatment is the most effective. Adding more treatment adds more benefit up to a point where additional ADT is of no extra benefit in contributing to a real cure/long term remission. I'm not sure where that point is but there has been a lot of research on it.

Here's a study from 2018 that compared 18 vs 36 months of ADT and found no benefit in 36 months over 18 months:

pubmed.ncbi.nlm.nih.gov/299...

One final idea. If your doc thinks that you need more ADT and you think you can't stand it, consider taking a one month dose instead of a 3 month dose. Then, for the next month, work on exercise and diet and see where you are.

ADT can be a real bitch and I truly sympathize with you but you probably don't want to die rather than take it.

Best of luck.

Alan

FulThrotl profile image
FulThrotl in reply to AlanMeyer

thanks for taking the time to reply.

tomorrow, i'll go in for a chat with my urologist, and see what his thougths are, altho i already know what he's gonna say.

i need to find out the PSA threshold where he can use his scans to look for tumors. he said his techniques can find individual cells, but he needs some PSA to work with. it's not much, but 0.04 is not enough.

what i want to do is wait till the PSA blips enough for him to go looking.

maley2711 profile image
maley2711 in reply to FulThrotl

FulThrotl seems to be saying that he received radiation first, and then later he began Lupron???? This doesn't seem to be in keeping with SOC....maybe there was a reason?

maley2711 profile image
maley2711 in reply to AlanMeyer

The study you provided included concurrent radiation.....but FulThrotl seems to be saying that he received radiation first, and then later he began Lupron???? This doesn't seem to be in keeping with SOC....maybe there was a reason?

AlanMeyer profile image
AlanMeyer in reply to maley2711

I interpreted FulThrotl's posting to mean he started the Lupron first, then got the radiation while continuing the Lupron. I assumed that from his report that his PSA went way down before he began radiation treatment.

maley2711 profile image
maley2711 in reply to AlanMeyer

He attributed the PSA drop to the diet, not Lupron. That is why folks here are confused. if you reread not just his post but his later comments, and still understand that he took Lupron prior to/concurrent with radiation, please point out my/our error.

FulThrotl profile image
FulThrotl in reply to maley2711

yep. i had radiation followed by lupron. not a normal sequence, but my healthcare was somewhat suboptimal. i've changed my entire medical group as a result of this and other shortfalls.

my PSA went from a peak of 33.5 to 1.1 BEFORE any treatments were begun on the prostate.

the fastest decline was 14 points in 5 days. it never bounced and went back up. it's been hovering between 0.04~0.06 since last thanksgiving. no blips.

maley2711 profile image
maley2711 in reply to FulThrotl

amazing!! Any explanation offered for this unusual outcome...some other factor that was actually causing the high PSA????? That is, could have been a coincidence re the diet and PSA decline? Association doesn't equal causation sometimes.

AlanMeyer profile image
AlanMeyer in reply to maley2711

Hello Maley,

Yes. I now agree your interpretation is indeed the one FulThrotl meant. He says it explicitly in "yep. i had radiation followed by lupron. not a normal sequence" and "my PSA went from a peak of 33.5 to 1.1 BEFORE any treatments were begun on the prostate." However I hope that FulThrotl will understand if I take those statements with a grain of salt. It's conceivable that he's misremembering the order, or that somebody mixed up the PSA test result before they gave it to him or, and this is something I've seen more than once and is perfectly understandable, that he misunderstood the results. All of those things can happen. Going from 33.5 to 1.1 purely as a result of switching to a vegan diet isn't something that I've heard of happening.

FulThrotl profile image
FulThrotl in reply to AlanMeyer

i paid pretty careful attention to. this, it was important to me.

and all of the PSA tests came from quest, and i paid for them out of pocket. all the results of this are on my patient portal. nobody has stood between me and the tests, to misrepresent or miscommunicate the results. it was worth $75 each to have decent results when i wanted them. when i first started the diet and meditation, i was testing twice a week.

that is how i know for a fact that the PSA dropped what it dropped, and the breakpoints on what it did.

08/06/2021. 25.9

08/11/2021. 11.9

fourteen of those points were in five days.

in all honesty, whatever you believe has no effect on me at all. why i posted this at all is that i wanted some feedback on lupron. i included my case history to provide some context, and i figured that a lot of people here have a lot of experience with lupron.

actually, a guy whose wife on here put us in contact with each other provided a wealth of information on lupron, as he's been dealing with it for 4 1/2 years. hell of a nice guy, lives in idaho, walking a hell of a tough path.

there was more to it than diet alone. there was also meditation. i'm not even gonna go into that, as enough folks on here got twisted with the supper bowl, the 2 hour meditation sessions per night won't be received well at all.

it's a funny world. i had one guy speak with me, he's gone vegan after the "you have 5~7 years left" report from his medical team. his veganation is higher quality than mine. but he wants to know about the meditation part. he lives near enough we can go thru it together.

we start middle of next week.

shit, what if it works? then, there will be two of us. perish the thought.

AlanMeyer profile image
AlanMeyer in reply to FulThrotl

Hello FulThrotl,

I accept that your account was made in good faith and with attention to accuracy. My problem is that evidence for an association of vegan or vegetarian diets with prostate cancer is relatively weak. Looking at Pubmed I found some articles that claim a small degree of association and others that claim no association at all, but I didn't see any that reported a dramatic association with PSA dropping from 33 or 26 to 1.1, and in just a few weeks! I recall one fellow on a prostate cancer Usenet forum reporting that he had been a vegan for 15 years before getting prostate cancer. And I found that epidemiological studies found that a percentage of cancer patients of various types were vegans.

Was the drop due to the change in diet? Was it a "spontaneous remission" that would have happened with or without the diet? Was it something else going on that nobody suspected - perhaps something in your diet that was causing serious problems but got eliminated along with the fats and cholesterols? Did you perhaps take bicalutamide (also called "Casodex") during this period (it's usually prescribed before Lupron)?

What did your doctor say about your PSA drop? Why did he proceed with radiation and Lupron if the PSA dropped into the normal range without any treatment? Was there any other testing, e.g., PET scans that showed that you still had cancer in spite of the PSA drop? Did you discuss skipping the treatment with the oncologist?

Whatever the cause of your apparent remission, I'm happy for you and wish you the best for the future.

Regards,

Alan

FulThrotl profile image
FulThrotl in reply to AlanMeyer

you are in good company. not many people believe it. all of us have confirmation bias. it's baked into who we are.

there are no exceptions. you, me, everyone. hell, when

i went vegan, i didn't think it'd work. i HATE most veggies.

i'm not on a culinary jihad here. i am not a willing vegan.

my endocrinologist:

"you are a freaking miracle. keep doing what you are doing"

my urologist:

"keep doing whatever you are doing. it's working."

neither one of them believe this did it. it's ok. they are both

excellent clinicians.

i'm annoyed i ignored what i believe caused most of this.

but i'm not that annoyed. it was the admission price to watch

miracles happen up close and personal.

i got sober a long time ago. using the 12 step process, i reversed

alcoholism in about 3 1/2 hours, between breakfast and lunch.

an awful lot of people in the 12 step community will tell you that

won't work. it's still working for me.

i shared my experience of this on wed. at a 12 step meeting, and had

someone with over 20 years sober tell me it wouldn't work.

quite adamant she was. nope. she had no idea if i was sober, or how

long i'd been sober.

i was exactly 14,000 days sober at that time. when i got sober, i had

maybe six months left, at the outside. it had been a rough path,

worse than many. very few people undergoing cancer treatment take

a pill and wake up four days later in flagstaff, with a total stranger in

their bed, and no money in their pocket. and it goes on for years.

so, i'm approaching this the same way i approached that, substituting

the word "cancer" for the word "alcoholism". and adding some dietary

stuff in, as well. no food factory growth hormones in the supper bowl.

that is it.

it doesn't have to work 14,000 days. 10,000 will be enough. that will put

me at 94.

i just hope that none of the people i've helped stay sober using the same

technique find out it won't work. over 3 dozen of them have been sober

longer than 30 years, individually.

they would be as traumatized as i was to find out it won't work.

we are all doing the best we can. this is my best shot. hope it works.

dhccpa profile image
dhccpa in reply to AlanMeyer

Excellent, thoughtful reply! Wish we had more of that spirit here.

mrscruffy profile image
mrscruffy

I have been on Lpron/Zytiga for 6+ years. I have overcome my weight issues with intermittent fasting and eating mostly chicken and seafood as protein source but have the occasional rib eye. I workout 6-7 days a week under the supervision of a personal trainer. When building muscle I load up on protein shakes and high protein foods and gain a little weight then go about loosing it. Lifting heavy has changed my physical and mental outlook for the better

Hey FulThrotl! I too was gl. 4+4 , stage#4 . I went trough almost the same side effects as you are now . I did 8 weeks imrt . Idid tri monthly Lupron for 18 months then I chose an orchiectomy that allowed me to drop the shots . I’m still taking Tak -700 stopping the adrenal t . I’ve had 3 T and no Psa over six years now . No signs of pc . Yet I’m still on adt . If I were you I would stay on and tuff it out .. and lose the weight . I’ve gone skinny . APC gone wild to me is worse than the many harsh side effects of simply having no t! If you reject the shots and your Psa shoots up you’ll feel pretty dumb at that time . I’m no expert . Each to his own . Good luckSir!

Bvilkid profile image
Bvilkid

FulThrotl your story reminds me of slammin’ the pedal to the metal, and nothing happens, when it used to pop your head into the back seat. Something changed last July . . something unpleasant. I too thought I’d just do intermittent therapy on my own terms (read my bio). Turns out I’m not much of a doctor. Tell your MO what’s happening but don’t stop your ADT. Do something else- Firmagon or Eligard. I’ve been on both. Just changed to Lupron last Friday - all of us are different physically and in what we expect from our treatments.

And for god’s sake man, grill a steak and crack a bottle of wine. This disease is bad enough without depriving yourself of some pleasures.

Keep posting and let us know how it’s going. 🥩🍷🙏

FulThrotl profile image
FulThrotl in reply to Bvilkid

well, the issue seems to be the growth hormones that factory farming puts into the food chain. if it makes your chicken grow fast, it seems to make your tumor grow fast as well.

i'm not doing intermittent therapy. right now, i'm sitting there with a rifle watching a gopher burrow. i'd rather wait till the little bastard sticks its head up, and kill it, instead of firing rounds into an empty target.

especially when i'm the target. :-/

i have had a few non vegan things in the last year. 5, to be exact. i've thought about introducing grass fed beef raised wild. i've got a good friend in the dakotas who raises his own beef, clean. no added hormones at all. grass fed. i'm not ready to roll the dice on that yet. the results i got from the vegan thing exceeded all of my expectations. i didn't think it would work.

as for drinking, i quit that on leap year day, 1984. that, i have not budged on, not even once.

wednesday, if i was counting, marks 14,000 days. at 10,000 days sober, i had two dozen friends out for brazilian bbq. it was a hell of a party. gonna have to do something different at 15,000 days. i've got 1,000 days to figure it out. just over 41 years. 40+ years? put an open party at the beach, and cater it. most people don't make it that long. guy i know, when he turned 50, he had a party at the beach.... 3,000 people showed up. i'm not a block party kind of kid, and wouldn't know what to do with that.

maybe a nice quiet little weekend with some good friends, someplace mind boggling. there are places in SW utah that come to mind.

when i got the diagnosis, people said they would pray for me. pray for the cancer. the poor little fucker has no idea what it hooked up with here.

Bvilkid profile image
Bvilkid in reply to FulThrotl

Right on brother. 😂 You’ve got this. Most guys on here would be fun to hang with 😎. Congratulations on an amazing accomplishment!!!

FulThrotl profile image
FulThrotl in reply to Bvilkid

i'm not everyone's cup of tea, but i do like cool stuff.... end of september, a week here. needs a backcountry pass to access it. about 200 people a year bother. it's 11 hours or so from the end of the pavement. this is why being debilitated by lupron is a problem for me. if i can't walk, hike, and offroad, well.....

far end of the maze, canyonlands, utah
in reply to FulThrotl

Wow thats a hike! What month did you do that in? Utah gets HOT!

FulThrotl profile image
FulThrotl in reply to

this september. i'm driving in. they recommend a jeep with enhancements so you don't get stuck. getting pulled out is about $3,000. the 11 hour allowance to get to the area is in... a jeep. end of september should not be horribly hot. the risk is if you get a lot of rain while in there, and the two roads out get greasy red utah clay mud, getting out is very hard to impossible. i can winch myself out 600' at a time if i had to, but getting out would be measured in days. heat i can deal with. utah mud on steep uphills is a whole 'nother thang. october is iffy.

in reply to FulThrotl

The southwestern “monsoon” ends on 9/30. What makes October iffy?

FulThrotl profile image
FulThrotl in reply to

all depends on the rain. i'm going in september 20th. it should be dry. if it's bad wet, you don't go in, 'cause you can't get back up flint trail if it's slimy. rangers won't give you a pass.

there is availability of spaces in september. the far end of the maze is the dollhouse. there are three campsites there. each can have three vehicles, max. you have to pick up your passes at the ranger station, and they kind of want to see if you know what you are about. having idjits go down there and get stuck isn't good for anyone. there is no cellphone service, and the only way to communicate is with an iridium pager. there is no water. it's a long way out on foot. further than i'd have wanted to try before the stage 4 cancer stuff.

i could get spaces in late september. october, of 90 possible slots in that month, there are 6 left, all onesies. that is the busy season. that pushes me to november, which is rain and snow there. i went down cottonwood canyon when it was wet, once. i dropped down the first hill, oozed all the way down it, and there we were. 50 miles in 4wd low, with the axles locked and the tires aired down to 8 PSI. there was no way back up that hill. the stuff was so slick you couldn't even stand up on level ground. there was 4" of greasy mud on the entire roof and hood of the jeep, just from what threw off of the outer edges of the tires. the fender wells had completely packed with mud, and the only part of the tires that would clean the cleats off was that outer 2" sticking out beyond the fenders. that is all that got us out.

finally came out at kodachrome basin, aired up, and limped back to the hotel. i was washing red silt out of the undercarriage for over a year. the jeep is now set up with a roof top tent, and some of the comforts of home, but i've been offroading 50 years, and know i don't want to get a 6x6 flatbed hauler to fetch me.

kainasar profile image
kainasar

I agree that vegan diet is helpful. As to ADT, Ive had much better luck with degerelix once a month. Some fatigue, but have had only minor loss in ability or coordination. Ive had almost no depression, memory loss, or cognitive deficits. PSA goes down immed and seems to work well as IADT. Medicare pays most of the monthly. Hope this helps.

Scout4answers profile image
Scout4answers

Try roasting the veggies

First time I roasted a Cauliflower, I ate the whole pan in one sitting. Just add onion, garlic and salt.

400* for 30 min add tomatoes and cook until tomatoes pucker. ( 10-15 min more)

treedown profile image
treedown

So if I am reading your post right the only metastasis you had was on your scapula? Nothing in lymph nodes or anything else?I would also be curious what technique he has that can find individual cancer cells. Please let us know what that is if you find out.

I had a drop in PSA before treatment from 156 to 90 (not nearly as good as yours) but after a month it came right back up. Fortunately I did not have the same issue with Lupron and recently stopped all ADT to see if my treatment was in fact curative. I was on it for 2 years. I actually lost over 40 pounds on Lupron and was very active throughout my time on ADT and remain so today. I appear to be one of the lucky ones. Both in the fact that I am able (I was on the younger side of this group ,56 at dx) and my response to treatment. You sound like a lucky one as well in your response to diet and treatment. I hope whatever you choose works well for you and keeps your disease at bay.

FulThrotl profile image
FulThrotl in reply to treedown

at the point they started radiation, they shotgun blasted my crotch, to be frank.the only thing they found outside of the crotch, was the scapula, but it's gone now.

initial treatment was not the cutting edge of medical treatment. let's leave it at that.

i'm seeing him tomorrow at 8 am. i'll come back with links.

dhccpa profile image
dhccpa in reply to treedown

What did you have besides Lupron? And were you metastatic?

treedown profile image
treedown in reply to dhccpa

L1M0, Zytiga and radiation

dhccpa profile image
dhccpa in reply to treedown

Thanks

treedown profile image
treedown in reply to dhccpa

Despite the M0 my PSA was 156 and the only scan was a CT and pelvic MRI. All 3 oncologists were convinced there was unseen cancer.

dhccpa profile image
dhccpa in reply to treedown

Yes, sounds like it.

Omg, that’s horrible, I’m sorry! My husband is into his 5th month shot July 1st. We did a 1 month then a 3 month. His PSA down to 4. It has whooped his butt too, but not as bad as you. We are going back to one month shots from now on. We can monitor PSA and maybe skip a couple weeks in between each shot. He is weak too and is so thin.

Oh, I meant to also say have your steak once in a while, just in moderation. Vegan is not easy to get use to, even though it is, so much better for you!

Whack a mole radiation can be enough to stop cancer for awhile. then do it again. Some people get long respites from that, or at least there are anecdotal cases that discuss it. Lupron is a life changer, there is no doubt about that.

ochsnerjournal.org/content/...

LearnAll profile image
LearnAll

There are several option to stay away from Lupron type meds .But not every one can utilize those options. I stopped Lupron once PSA came down to 0.2 from 830 and then was able to maintain PSA at 3 to 4 (I have prostate and have never had surgery or radiation) for one full year.. just with Bicalutamide ,Tamoxifen and Dutasteride. These meds do not lower testosterone . No serious side effects other than mild enlargement of breast.After Bicalutamide lost effect, I went on Abiraterone 500 mg with full fat breakfast. This controlled my PSA and Testosterone went down to 4. Side effects were less than Lupron specially no brain fog. I need my brain as I work full times as a brain worker. Besides this 5 mile walk every day, Keeping BMI below 24 by intermittent fasting and a plethora of plant based anti oxidant, anti inflammatory foods and some supplements. Bone scan and MRI both showed ZERO mets last week.

I am not saying you should do what I did. I took the risk and it has given me 2 years of Lupron free life and good quality of life so far.. I plan to continue as long as it keeps PSA below 10. Choosing such alternate path of treatment requires a full assessment of degree of aggressiveness of PCa. Men who have Gleason above 8, low PSA type PCa, any visceral mets,

germline mutation such as BRCA1 ,BRCA2 ,ATM etc. are some examples of men who should not consider such alternatives to Lupron..It can be too risky in such cases.

jazj profile image
jazj in reply to LearnAll

I think your last sentence is very good advice.

dhccpa profile image
dhccpa in reply to LearnAll

Always enjoy your posts! How long on AA? Still on it?

LearnAll profile image
LearnAll in reply to dhccpa

About 11 months so far. But closely monitoring it.

maley2711 profile image
maley2711 in reply to LearnAll

Here is the problem with other men following your path...it is strictly anecdotal and a study of one proves nothing does it? You don't actually know that any certain off-brand treatment choice is the reason for a certain result...or do you??

LearnAll profile image
LearnAll in reply to maley2711

Maley2711 ..You do not need to be angry as I have already written above that I am not suggesting anyone do what I am doing. Its entirely my decision and my risk...so just calm down. Do what you are comfortable with.. I have no intention to convert anyone.

Kaliber profile image
Kaliber

Lol ..sign me up yayahahahaya

GeorgeGlass profile image
GeorgeGlass

Alot to cover but I'll keep it confined to the most important aspects of your inquiry:1. I think vegan is good for general health, heart etc. but not everyone agrees. I eat mostly vegetables but some oatmeal and fruit as well as nuts and seeds and beans. There is subtlety to eating and health. Whatever you eat, try to get organic, no-antibiotic etc. I eat smart-catch salmon twice a week. I eat a grass-finished top sirloin steak about once bi-monthly, cut into quarters so I get a little for about four straight days. The key to eating veggies is sautéing them with some water or broth and dipping them in a no-added-oil hummus and adding tabasco or whatever hot sauce you like. Also eat salads and skip the dressing. Just use mustard, low sugar vinegars, horseradish etc to give it flavor. The hot foods help fight cancer as well. I drink booze on rare occasions now. I used to drink alot and exercise/sports alot. I stopped the boozing and drink matcha green tea powder for sustained energy.

2. I used Lupron for about four years. You can try Orgovyx pills (once a day). They have less of an impact on my hot flashes. They showed that they were safer for your heart in one study, than Lupron. I don't have any problems with Orgovyx except the normal stuff like tiredness or laziness. If you drink the matcha green tea during the day, that will help fight the tiredness.

3. I have done intermittent ADT, with 3 breaks over the past six years. A top oncologist at Duke said that it is equally effective as continuous. His assessment was that a study showed continuous resulted in about a six month longer effectiveness before men became castration resistant. The doc attributed that to some of the patients on IADT let the cancer get out of control and spreading before they started by on the ADT. Thus, if you do IADT, set an arbitrary number like a PSA of 6 or 7 and then get back on the ADT. Many guys who have never had their PSA go above 1 or 2, think it is insane to let it go as high as 6 or 7 but for men who have already had a much higher psa previously, going up to 6 or 7 is nothing, especially if you have a very rapid PSA doubling time.

Let me know if you have any other questions.

George

FulThrotl profile image
FulThrotl in reply to GeorgeGlass

thanks for all that. when this started, my PSA went from 0.1 to 26 in about 6 months. it stayed there, steady at 26 for four months, except for a spike to 33.5 a week after the biopsy. it seems the little thing didn't like getting poked at. i got the biopsy report, did some googling, and anything above PSA 20 is stage 3, and the urologist and oncologist both called it stage 4.

so, i used the heavy duty prayer: "god if you're not there, i'm fucked". half hour later, a friend of mine called to say hi. i told him what was up. he's early 40's, redheaded, vegan, buddist, and lives in fort worth, and is an extreme long distance trail runner.. i know, none of that fits together. the guy is a bit batty. he trained this year for the cocodono 250 by running rim to rim to rim of the grand canyon, nonstop. repeatedly.

he said i should do vegan. recommended a book called "how to not die". chapter 13 was how to not die from prostate cancer. said to give it four months, without cheating. it wasn't like i had a lot to lose. i went vegan the next morning. had not done any treatment for anything yet. they were poking, looking for other tumors.

before they started treatment of any kind, the PSA crashed, dropping to 1.1 the day before i started radiation. on the other side of radiation, it was 0.06, before the lupron shot. it's been at 0.05 since thanksgiving, before the lupron shot.

this wasn't the only dog barking, it turned out. while looking for spread, they found my thyroid had three different tumors, two stage two, and one stage one. the largest of them was 3 1/2" and half a pound. i had an excellent surgeon, and he got it all out. RAI and a subsequent scan shows just thyroid bed tissues. next january, the oncologist treating the thyroid will scan, and if i'm clear, release me cancer free.

so, there were four cancers. one stage 4, two stage 2, one stage 1. nobody can find any evidence of any of those cancers at this time. i have 5 cancer specialists poking me, looking for anything amiss, and none of them can find any cancers.

i have appointments at UCLA with the urologist tomorrow morning. jill and i were talking tonight, and she said "do what your gut tells you to do. i don't always trust you with some stuff, but i trust you with this."

having four different cancers at the same time is a whole lot better than having one cancer in four different places at the same time. those poor cancers. they have no idea who they decided to fuck with.

it's 10:30. time for two hours of meditation. if you see a glow in the west, it's not a brush fire, i just turned up the wattage a bit.

thanks again for taking the time to write.

Currumpaw profile image
Currumpaw in reply to FulThrotl

Read about Dr. Ruth Heidrich.

If you peruse the net you will find a report by one of the guv acronym agencies about a man who had been told the "jig" was up, prostate cancer. He had nothing to lose and became a vegan. Within a year his metastases had disappeared. The words exactly were, "He got a little cocky", and introduced some chicken, turkey and tuna into his diet. Within months his cancer returned "with a vengeance". Returning to his diet no longer worked.

In the 70's one of the macrobiotic diet followers, when switching to the macrobiotic diet defeated cancer and wrote a book. He was highly celebrated. He, feeling he was cured, returned to eating as he had and his cancer also returned. Diet no longer worked for him either.

A friend who is a vegan is a member of a vegan club that once a month gathers at a restaurant serving vegan meals. Several members of this club had been told by their doctors that there was nothing more to be done for their cancers. They were advised to prepare for their deaths. My friend would be ecstatic if one of the rather young women in the group would date him.

There are those that who will cast a negative light upon diet changes especially those who become vegan in an effort to defeat their cancer. They --have studies. Studies that are paid for by--vegans? This isn't helpful. Most here have had some type of treatment that has, at least to some extent, failed--otherwise we wouldn't be here--right? A friend who has passed that was on another site once posed this question, "If whatever procedure you had for your prostate cancer was successful, would you be on this site or just living your life?" We know what the answer don't we! He was a lawyer. He went by the name "Dollar Bill". The point is, those who decry the positive effect that becoming a vegan can have for those with cancer often tout the success rates of surgery, radiation or whatever but denigrate what becoming a vegan can do. There is a synergy in life that cannot be denied. Sometimes becoming a vegan is that part of synergy that is missing. The combination of foods is also of great importance.

Your belief is an important key. Don't let well-meaning people who are so certain of their beliefs, weaken your resolve. I think that Dr. Ruth Heidrich ran an Ironman in her early 80's about 40 years after she became a vegan and the metastases on her ribs disappeared.

There are studies. I suggest that you be your own study. Keep your doctors informed. My oncologist has become a bit of a believer.

Just as types of radiation, surgery, a combination of the two, drugs thrown in too--do not work for everyone, don't expect becoming a vegan to be a sure thing either but it could be the last key!

Currumpaw

FulThrotl profile image
FulThrotl in reply to Currumpaw

well, it works that way with alcoholics, as well. after a period of time sober, any alcohol triggers a far worse episode. and the thought that "i can just get sober again" oftentimes doesn't work. most alcoholics die drunk. true story.

the analogy is that if you haven't had sex for a month, you don't become a virgin again.

i'm suspecting that unlike alcohol, a single "forbidden" food bite won't trigger gluttony such as alcoholics experience. but one has to wonder where the threshold is at.

i'm not gonna find out. i have some practice at not drinking, and am going to put it to good use here.

tomorrow is 14,000 days sober for me. a bit over 38 years. how many drunks make it? far, far less than people who survive cancer. after the success rate i saw with drunks, 80% mortality was a slam dunk cinch from my perspective.

so that meditation thing that i mentioned earlier, that was ignored in all the fooferaw about the diet thing?

i took the 12 step process, and substituted the word "cancer" for "alcoholism", and then did the process. took about 4 hours, and then the 11th step meditation about a week or two to be effective.

just when you thought all the prattle about diet couldn't get any worse, then he starts talking about meditation. ....

crap. there goes the neighborhood.

Currumpaw profile image
Currumpaw in reply to FulThrotl

I wish all the success. The "prattle"? Up close and personal--when my friend of 13 years who is the vegan in the vegan group that dines out once a month tells me that several of the members were told to get their affairs in order, nothing more to be done? They went vegan and are healthy and vibrant.

My friend first became a vegetarian decades ago when his father was diagnosed with prostate cancer. After some time as a vegetarian he decided to become vegan. He was one of the IT people on a business with offices in Boston.

Never discount what diet can do.

Stay well! Exercise!

Currumpaw

FulThrotl profile image
FulThrotl in reply to Currumpaw

i was just being a smartass. truth is, there are only threethings in play here:

the thoughts i think

what i put in my body

who i agree to let help me go where i think i want to go.

Currumpaw profile image
Currumpaw in reply to FulThrotl

Smart ass or smart man?

Thoughts are very important--thoughts can rally the immune system or suppress it.

Who you accept advice from--Are their beliefs so rigid that they have a tunnel vision? Are they critical and negative? Is being critical and negative more important to them--than being supportive to you?

I think you are a smart man who at times let's his sense of humor allow him the luxury of being a "smart ass"!

Currumpaw

dhccpa profile image
dhccpa in reply to GeorgeGlass

How many grams/kg of protein do you get daily on average?

jazj profile image
jazj in reply to dhccpa

This is a subject I recently visited in analyzing my diet. The trend in diet in general in recent years is high carb is bad for you. But supposedly, high protein is bad for cancer (over generalizing). Supposedly from a few things I read, trying to keep protein to 15% or lower of your calories is optimal for PCa patients. Low on saturated fat of course and just don't get the majority of your carbs from refined carbs and sugar (whole grain products, veggies, fruits.) That's my personal loose guideline. I try not to go over the RDI for protein which is 0.8 times your body weight in Kg. Amount of exercise and if you are trying to build muscle or lose fat of course affects that equation.

dhccpa profile image
dhccpa in reply to jazj

Yes what you do is essentially what I do. And I've also heard cautions about excess protein and cancer based on large population surveys

jazj profile image
jazj

I've been on an 80% Vegan Mediterranean Diet since PCa diagnosis. You may have convinced me to go 100% Vegan. Honestly I don't think anyone here believes you that going 100% vegan alone created that huge of a PSA drop. Never heard anyone report anything close to it, but there's a first time for hearing about anything!? :) I think it's possible - but WOW.

I also am not sure why anyone is still choosing Lupron over Relugolix (Orovyx) as I've been told private insurance is now covering it. A pill instead of a shot. Quicker/lower T. Faster T recovery (although that could be a negative for IADT) and less potential cardiac side effects. No trips to the office to get a shot in your stomach. Seems like a no brainer over Lupron.

FulThrotl profile image
FulThrotl in reply to jazj

i was testing twice a week, 'cause i needed feedback if it was working.... and i tested twice at 26ish, and was thinking "crap, it's not working..." and logged on to the patient portal on a saturday morning, and in five days, it had dropped by over half.

i just sat there in bed and cried.

i really don't expect anyone to much believe it here, but it's what happened.

note the dates:

25.9
FulThrotl profile image
FulThrotl in reply to FulThrotl

14 point drop, 5 days. it hasn't ever risen, only dropped.

11.9
GeorgeGlass profile image
GeorgeGlass in reply to FulThrotl

You said that your psa was .05, but this test result says 11.9. It's not clear to me what the PSA progression has been and what treatments are causing it.

FulThrotl profile image
FulThrotl in reply to GeorgeGlass

that sample was 8-11-21, and it was when the psa dropped from 25.9 to 11.9 in four days. it continued downward to it's current value of 0.05

it slowed the rate of decline after that, but in 4 weeks, went from 25.9 to 1.1

14 points in 4 days? is there anything else that could reduce it that quickly,

including prostate removal?

=============================

this occurred before any medical treatment had been performed, this was

from diet and meditation ONLY.

=============================

this is the part i found important, and i've had a fair bit of shit on here from

other people telling me this can't have happened, that i'm mistaken on what happened, and a number of other postulations.

i'm done here. to all the folks who said "cool shit", thanks, and maybe the

information may help you in your situation. some of ya gave me helpful information on Lupron, which is what spawned my post in the first place.

to all the folks who said "bull shit", thanks, and have a nice day.

spw1 profile image
spw1

My husband is vegan since his diagnosis and it did help his pain profile in the early weeks before any treatment started. His overall health remains good with exercise when he can (treatment permitting). He has not had the luck with keeping PCa down but then the three-monthly injections do not give him noticeable side effects either. My husband loves vegan foods and we cook whole food plant based stuff.

Seasid profile image
Seasid

I would switch to Firmagon. I am on Firmagon four years long now and I don't have hot flashes. It is better for your heart too. I would stay on ADT and would do deadlifting and walking, maybe HIIT running 20 second and then walking until you recover and running again. I would still eat some meat. Some people live long on ADT alone. Cancer is not fun and you could be cured if you switch to Firmagon. In your situation I would continue with the ADT. (Firmagon is also an ADT but milder on your heart etc.)

jazj profile image
jazj in reply to Seasid

"Cancer is not fun and you could be cured if you switch to Firmagon."

Are there any studies to support that as I believe Tall_Allen would probably disagree with that statement. At least in the absence of simultaneous radiotherapy. ;)

Seasid profile image
Seasid in reply to jazj

You are spot on. You need radiotherapy.

SteveTheJ profile image
SteveTheJ

I eat meat every day; is that your question? You can listen to whomever you want but you can also get multiple opinions.

MateoBeach profile image
MateoBeach

Hi FulThrotl. Nice to meet a fellow adventurer. Love canyoneering and backpacking in the mountains all over the west. In BC Canada now on my BMW 1250 GSA. In two weeks I’ll be on a section hike on the John Muir Trail. I had terrible sarcopenia (muscle loss) from ADT and close to obese. For me ketogenic diet one-meal-a-day worked magic. Dropped all the fat effortlessly 190 to 145. And I eat large portions of animal or fish protein with most all my dinners. Tried vegan for 2 years before and it did not work for me.

As for your initial response, I would suspect that you must have had something else going on in your prostate in addition to the cancer. Prostatic is May have been present and resolved itself while you were doing the vegan diet. That could account for it. Ask the urologist. So your actual cancer burden may have been much lower.

Then you had definitive radiation therapy to the prostate. (Did they also irradiate the pelvic lymph node fields? The scapular lesion?)

Then you have had now 6 months of adjuvant ADT. With your low (<2.0) PSA before you started ADT, many would say that the six months of ADT is sufficient. Especially given the debilitation/ sarcopenia. I had salvage radiation and only did six months of ADT.

Let your testosterone recover and put your muscle mass and strength back. You are not in any danger in the short run from interrupting ADT. If PSA does go up above 0.25 or 0.5 then getting the most sensitive scan, a PSMA PET scan (Pylarify) can show where any remaining cancer might be. It does not Show individual cancer cells but can reveal clusters down to 4 mm. This should also confirm whether or not the lesion in your scapula is actually prostate cancer. And you can decide on the best

Path forward for yourself as an individual.

Note I am on intermittent testosterone therapy (modified BAT) which is not SOC

But is working wonderfully for me. MateoBeach (Paul)

dhccpa profile image
dhccpa

Interesting that you gained 25 lbs while going vegan. I've lost 40 lbs. Are you eating snacks? Candy bars? Dairy? Are you drinking alcohol?

Lupron is not fun, but I've used for 3.5 years without neuropathy or noticeable loss of strength (my level was and is far below yours).

My husband's MO did not recommend any diet. Just eat what you want in moderation. He's stage 4 as well and has mets all over his body. Organs are not compromised. He walks at least 10 miles a day and plays golf 3 or 4 times a week. He works full time and we believe this is helping in more ways as far as mental and physical. His MO team has been blown away. We are 3 years into Lupron. Stay as active as possible and push yourself. How young/old are you?? My husband is 61. Be positive!!!

Rsdutcher7 profile image
Rsdutcher7

Read books like “eat to beat disease”. Tons of scientific data on the impact of FOOD. We are what we eat. If that’s working for you then keep it up. Everyone is different. This sight is phenomenal for brilliant men who have walked the walked and tried everything a doc will do or prescribe. But when it’s YOUR life only YOU can make the decision. If ADT is destroying your quality of life, then try BAT or go off it completely if that’s what your intuition is telling you to do. We’ll all support you either way. We didn’t have as much luck as others with lupron or xtandi even working passed 6 months each. And The cognitive decline was unbelievable for my husband, complete loss of short term memory. Not worth it!

anonymoose2 profile image
anonymoose2

Almost the same diagnosis I insisted on month to month Lupron shots.

The reason because it was a mental choice. Telling myself it’s only a month shot I can do this. Sounds strange I know but I did it to please myself. The doctor understood.

Feeling in control was another part of the mission.

I got to the point of adding Xtandi and that shot my PSA to undetectable and started 3 month Lupron shots.

Im currently on a drug vacation (3 months)

My undetectable is now 0.175 September it will be tested again. This vacation is really a blessing and in the back of my mind Im in control. I’ve made my mind up that I will do the same therapy no matter the anxiety of all the repercussions from the Lupron. For diet no sugar, ultra low carbs. Main reason fatty liver. Non alcoholic fatty liver. Im loosing weight.

Good plus! Keep fighting. Hopefully you can have a drug vacation.

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

You can't go full throttle on a vegan diet.... Vegan diets are for vegans.... Eat anything and anyone you like...I've been on Lupro/Casodex for a long time and the only things I have to complain about are:

ManBoobs,

A Penis that is just a Pen,

No hair on my body.

Memory shot to hell.

No sex

Weight gain.

Tired some times.

I love ladies shoes.

I'm 85 and act 16.

So do what you want to do....... and BTW how old are you and where are you located? City/State.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/28/2022 5:51 PM DST

FulThrotl profile image
FulThrotl in reply to j-o-h-n

66, huntington beach, calif.

j-o-h-n profile image
j-o-h-n in reply to FulThrotl

66, huntington beach, calif.

Now that's Livin' La Vida Loca

youtube.com/watch?v=p47fEXG...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/29/2022 12:50 PM DST

FulThrotl profile image
FulThrotl

ok.... the executive summary:

8:45am, UCLA. saw my urologist.told him what my PSA is currently,

and what side effects i have been having.

he did a digital exam, and said he wants to see me in six months,

and get a PSA the week before.

no more lupron. his idea, not mine. i also got a history

of lupron in this application, as his practice spans 50 years.

we are waiting to see if my PSA goes up enough he can do diagnostics.

he can scan at 0.5, but prefers 1.0 so he has more fuel to work with.

no further treatment until my PSA hits 1.0. a visit twice a year for the

next five years.

and keep doing what i'm doing, whatever it is, he said.

"whatever you are doing, keep doing it. it's working."

i have a six month followup with my endocrinologist thursday.

looks like i'm on the same flight plan with him. bloodwork

came back. need an US on the neck and former site of thyroid,

but i won't know for sure until next january, when i get a RAI scan

for any active thyroid tissue.

until further notice, marked cancer free is where i'm at right now.

my medications are, in total:

flomax

thyroid hormone, 175mG per day.

friday, i'm gonna smoke a filet mignon, and a slab of salmon.

time for a celebration.

edit: maybe not. the last steak i had, i felt like crap for almost a week.

it was a huge steak, but still. maybe i'll just do the salmon for jill and call it a day.

ss
FulThrotl profile image
FulThrotl

yeah, i still know how. filet mignon, smoked to 129 degrees internal temperature.a rub i probably won't disclose, as some of y'all got bent when i talked about food.

fm
FulThrotl profile image
FulThrotl

here is who is treating me.... leonard marks, ucla

youtu.be/w9PeWDc_Jxg

Nous profile image
Nous

hi FulThrotl ... consider asking your doc to try you on another ADT drug instead of Lupron ... as others have said strength training and aerobic exercise is super important ... best wishes ... Nous :)

Boywonder56 profile image
Boywonder56

You can see lupron is a popular subject....throw in a 2nd tier aplutimide and qol sux. I am in j.o.h.n.s camp....i used to be super man now im lois lane....good luck today with your sobriety.....bw🇮🇪🇺🇦

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