who out there has been on Lupron and ... - Advanced Prostate...

Advanced Prostate Cancer

21,056 members26,262 posts

who out there has been on Lupron and abiraterone?

Nowhereman9 profile image
71 Replies

who out there has been on Lupron and abiraterone? Who is the longest survivor out there in terms of not transitioning to castrate resistant. I just started treatment 6/15/23 and am trying to hit it with additional therapies as my PSA declines. Vit c. Melatonin. Ivermectin. I am going to start baking soda today.

Written by
Nowhereman9 profile image
Nowhereman9
To view profiles and participate in discussions please or .
Read more about...
71 Replies
Bret5 profile image
Bret5

you forgot snake oil

Nowhereman9 profile image
Nowhereman9 in reply to Bret5

Only utilizing things that have activity against Pca! Pubmed did not list snake oil as having a negative effect on Pca. Send me the article about snake oil please.

in reply to Nowhereman9

Snake oil is much better than Ivermectin.😉

Nfler profile image
Nfler in reply to

Again show a reputable article that says snake 🐍 oil is better than ivermectin..!

Nowhereman9 profile image
Nowhereman9

well I will let you know how I do

dhccpa profile image
dhccpa in reply to Nowhereman9

I've done the same in combining regular treatment with alternative things and lifestyle changes. Carry on!

mrscruffy profile image
mrscruffy

7 years, 2 months on just Lupron/Zytiga. Only taking supplements for building muscle

Nowhereman9 profile image
Nowhereman9 in reply to mrscruffy

What was your PSA to start with the advanced disease? How low did it go? When did it reach the nadir? What is your diet?

mrscruffy profile image
mrscruffy in reply to Nowhereman9

PSA never rose above 12, I am currently sub 1, did have it raise once to 3 but radiation took care of that. Never had chemo nor worried about nadir. I workout 5 times a week, no cardio just lift heavy. mostly intermitent fasting with very little red meat. Not many veggies but tons of fruit and lots of protein

dochelem profile image
dochelem in reply to mrscruffy

What supplemets are you taking for building muscle?

Nowhereman9 profile image
Nowhereman9 in reply to dochelem

I have not taken any for building muscle my focus has been to create apoptosis and try to kill it off now as my PSA drops to zero.

mrscruffy profile image
mrscruffy in reply to dochelem

BCAA's, creatine Ostarine and about 100gms of protein in a shake

NYCUWS profile image
NYCUWS in reply to mrscruffy

What are the best supplements for muscle-building? I do weight-training 4x/week and the lack of muscle is discouraging. (9 months on Orgovyx/abiraterone/prednisone)

mrscruffy profile image
mrscruffy in reply to NYCUWS

See my post above, I have been using those supplements religiously over the last 18 months and have made huge gains all around lifting heavy 5 days a week

NYCUWS profile image
NYCUWS in reply to mrscruffy

yes, thanks saw your reply after I posted. Oops! Thanks again. 😬

Derf4223 profile image
Derf4223 in reply to NYCUWS

The point of weight training for those of us with APCa is for one's muscles to release myokines. Doing it daily is better. It can take 6 months. As for gaining muscle, that is a _nice_ possible consequence but at the same time one has to work harder to get your muscles to the myokine-release point.

ADT/Abiraterone causes the absence of T, and that causes sarcopenia, so IMO you have to work twice as hard to gain muscle bulk.

My exercise motivation is myokine-release first and muscle building second.

cancerworld.net/exercise-my...

While on ADT/Abiraterone one also loses bone density fast.

Rufino profile image
Rufino in reply to mrscruffy

Please advise what kind of supplements do you take for building muscle.

mrscruffy profile image
mrscruffy in reply to Rufino

Check my previous post aboe

Nowhereman9 profile image
Nowhereman9

way to go!!! God bless you!

Derf4223 profile image
Derf4223

Exercise -- degree of benefit depends on severity of PCa and age -- lots of material here on healthunlocked about it.

health.harvard.edu/blog/exe....

Irun profile image
Irun

nearly 8 years , PSA 342 originally has been between 0.11 and 0.3 for the last 7.

I have run over 15,000 miles since diagnosis , stay fit , exercise loads .

Nowhereman9 profile image
Nowhereman9 in reply to Irun

So exercise is a common theme between you and mrscruffy.

Irun profile image
Irun in reply to Nowhereman9

In my tiny straw poll of about 20 men I personally got to know with stage 4 pca , they all are sadly dead , some in 2 years others up to 5. There are 2 of us alive and …… we both run most days . Others will confirm/disprove the science but if you were me you would not stop would you? Too many men get a rubbish prognosis , give up , no exercise , bad diet and loads of booze . That is not a good formula for life let alone life with cancer .

dhccpa profile image
dhccpa in reply to Irun

How old are you?

Mgtd profile image
Mgtd in reply to dhccpa

Looking at the bio I would say around 62

dhccpa profile image
dhccpa in reply to Mgtd

Yep. Should've read before I asked!

Irun profile image
Irun in reply to dhccpa

58 my friend , diagnosed T4 at 49

dhccpa profile image
dhccpa in reply to Irun

Thanks

mrscruffy profile image
mrscruffy in reply to Nowhereman9

I do very little cardio but lift heavy, my MO tells me that it helps with the cancer and he wishes all patients could see my gains

NathanZ1 profile image
NathanZ1

I’ve had prostate cancer 14 years. Caught it at stage one had prostectomy and no symptoms and zero PSA for 5 years. Then started having pain in ribs and lower back. Started Lupron and Doxytaxel and ZYTIGA and Xtandi. PSA went to zero until about a year ago and now it’s back and I have no more treatments options. So I’ve been metastatic to entire bones in my body and so far no visceral involvement but lots of pain. I’d say 8 years survival once metastatic Lupron and ZYTIGA and Xtandi bought me those 8 years

Hope this helps sir

Nowhereman9 profile image
Nowhereman9 in reply to NathanZ1

Thank you for the response. That is great that you had the past eight years. I wish you the best with love and peace.

RayF profile image
RayF

4 years 8 months, Lupron, Zytiga and prednisone only. Push yourself to exercise, do physical work, eat clean. I don't smoke or drink. The meds will try to drag you down mentally, you have to push back. I have been lucky too, PSA highest has been .06 after treatment. Three months later it was .03. My next test is in a few weeks.

Peealot profile image
Peealot

I've been on Lupron for nine years. Bicalutamide was added in September of 2021. That was then replaced with Zytiga in November of 2022. Soon I turn 73 and I can take a licken and keep on ticken (for now anyway)

Nowhereman9 profile image
Nowhereman9 in reply to Peealot

Any specific survival secrets?

Schwah profile image
Schwah

I’m at 7 years on Lupron/Zytega and s year into vacation # 2. I feel great.

Schwah

Nowhereman9 profile image
Nowhereman9

7 is our lucky number god bless you all. I hope to be as fortunate!

Gatodd profile image
Gatodd

Started zytiga (+ prednisone) and firmagon in December 2020. Switched from firmagon to lupron in June 2023.

MO said no supplements. Exercise is tough because of fatigue, but the less I exercise, the worse the fatigue is.

Also, quit drinking except in rare occasions due to zytiga effect on liver.

Had hdr and Ebrt in early 2021.

Exercise is so important. Do it when you think you can’t.

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

Got it in 2002 (age 64) RPD.... still fighting it.....(age 86)......... Lupron and Casodex for about 15 years, just switched over to Nubeqa in place of Casodex (roughly 3 months).....MSKcc...

LAUGH YOUR ASS OFF!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 08/06/2023 3:15 PM DST

Nowhereman9 profile image
Nowhereman9

great l!

Rufino profile image
Rufino

at what time and how much do you take Vit c. Melatonin. Ivermectin and backing soda. Thank you

Nowhereman9 profile image
Nowhereman9 in reply to Rufino

youtu.be/YU9QUbsqrcQ melatonin

Nowhereman9 profile image
Nowhereman9 in reply to Rufino

chrisbeatcancer.com/high-do...

Vitamin c

Nowhereman9 profile image
Nowhereman9 in reply to Rufino

ncbi.nlm.nih.gov/pmc/articl...

Ivermectin anti cancer

Nowhereman9 profile image
Nowhereman9 in reply to Rufino

ncbi.nlm.nih.gov/pmc/articl...

Baking soda

dmt1121 profile image
dmt1121

I would run your alternative treatments past your MO. Ivermictin is not an FDA approved treatment for prostate cancer. It has only been studied preliminarily.

ncbi.nlm.nih.gov/pmc/articl...

Supplements are may be helpful when carefully researched from reliable sources.

Good Luck.

Nowhereman9 profile image
Nowhereman9 in reply to dmt1121

pubmed.ncbi.nlm.nih.gov/360...

Anything to beat the odds of 30% 5 year survival.

dmt1121 profile image
dmt1121 in reply to Nowhereman9

Many men on this site have beaten the 30% number which has not been reevaluated for many years to reflect the new treatments, such as abiraterone. As far as using ivermectin, it's your life, but this is not a recognized treatment for PCa.

You cite a single study and that is statistically irrelevant, especially given it has not part of any FDA approved clinical trial. The article ends by saying: "These findings provide insight into both the effects and mechanisms of ivermectin as an anticancer agent. This raises the possibility of broadening the clinical evaluation of ivermectin for the treatment of prostate cancer."...as in, this is not FDA approved.

There are FDA approved treatments that have been proven to be effective in fighting advanced PCa and patients are living much longer using them. Take your time and really look at the breath of information from respected sources about treatments to which ones have been proven to work. Once you are well informed, then make a list of those that interest you and discuss with an MO. Once you are into advanced PCa territory, urologists are not knowledgeable enough.

I hope you find the peace of mind that allows you to follow a path to your good health.

Nowhereman9 profile image
Nowhereman9 in reply to dmt1121

I appreciate what you are saying and I am pursuing what traditional medicine has to offer but let’s face it the Medical pharma world makes money from the chronically ill not cured patients so I will take what they give but pursue alternatives too.

dmt1121 profile image
dmt1121 in reply to Nowhereman9

I agree!

Nfler profile image
Nfler in reply to dmt1121

I personally am solely on ivm kinda of n=1n it. Thus far it’s working rather well psa has gone down n stable for the last seven months whereas before anytime i got off adt it would shoot up to about 6 or 7 and this w my MO’s blessing as he’s rather amazed n pleased that it’s stabilized…

dmt1121 profile image
dmt1121 in reply to Nfler

Where are you getting treated?

Nowhereman9 profile image
Nowhereman9 in reply to dmt1121

Libya

Nfler profile image
Nfler in reply to dmt1121

Uc San Diego one of the more prominent cancer trx centers but only do soc, that’s why I’m so pleased that he’s allowing me to do the ivm n orders blood work initially every 2 weeks n now monthly. The one possible side effect is low white blood cell count but I was able to alleviate it w Vit b6/12 and a little iron…

Nowhereman9 profile image
Nowhereman9 in reply to Nfler

My understanding of abiraterone is that it prevents production of testosterone. It seems that ivermectin has a separate effect to kill prostate cancer cells. Breaks its dna and causes apoptosis.

fzpinc1 profile image
fzpinc1

I have been off and on Lupron since 2017 following a prostatectomy, 38 days of radiation and then the Lupron. My PSA got down to <0.06 or, undetectable. It's been a year since I've had a shot and only now has my PSA went to .18. The things you list as alternative treatments I assume you got from Twitter. Metformin is a diabetes treatment. If a doctor gave these to you - get a real urologist. Get smart! Trust SCIENCE! It's your life!

Nowhereman9 profile image
Nowhereman9 in reply to fzpinc1

Thank you for your input. I am on methylprednisolone a corticosteroid which raises blood sugar. It makes sense to lower blood sugar with metformin right? I am no doctor but it sure makes sense.

fzpinc1 profile image
fzpinc1 in reply to Nowhereman9

You should not play doctor with your life. You should certainly investigate any and all science based thoughts. Lupron, by cutting your testosterone, does not kill the cancer, (my understanding is) but it keeps it from "feeding". Yes, metformine is used to treat diabetes. Deal with your blood sugar levels as a blood sugar issue.

Nowhereman9 profile image
Nowhereman9 in reply to fzpinc1

youtu.be/7YbRCxeIVU0

dmt1121 profile image
dmt1121 in reply to Nowhereman9

Related:

uclahealth.org/news/metabol...

classic.clinicaltrials.gov/...

ncbi.nlm.nih.gov/pmc/articl...

corporate.dukehealth.org/ne...

middleeastmedicalportal.com...

Nowhereman9 profile image
Nowhereman9 in reply to dmt1121

Thank you. Very interesting.

Nfler profile image
Nfler in reply to dmt1121

Thank you a lot of good info, …

Nfler profile image
Nfler in reply to dmt1121

WOW now your really talking with the blocking of the glutamine from the Middle East portal, who would’ve thought. I knew there had to be a better way than shutting down one’s testosterone, knowing that it doesn’t kill pca n quits working after awhile. Common sense tells us it’s just not right to deplete someone of their t, especially when it’s not the cure. Glutamine blocks sounds so much more logical, maybe even better than ivm, we’ll see thanks…

Nowhereman9 profile image
Nowhereman9 in reply to fzpinc1

pubmed.ncbi.nlm.nih.gov/373...

fzpinc1 profile image
fzpinc1 in reply to Nowhereman9

YTou really NEED to be consulting with a urologist about these treatments. You have no idea how they might interact with the Lupro, etc. The internet social media platforms will not be the most reliable place to get medical advice.

Nfler profile image
Nfler in reply to fzpinc1

Medical oncologist is usually much better than a urologist n all lupron does is shut down ones testosterone n doesn’t really interact w any other drugs. Ivermectin n metformin help kill pca cells wo shutting down testosterone, therefore one doesn’t get all the possible fatal side effects, like heart disease, stress, night sweats and or stroke…

Nfler profile image
Nfler in reply to fzpinc1

I don’t take metformin but there is a reputable Dr(mo) that does incorporate it, so you may want to do a little research as well…

jfoesq profile image
jfoesq

I have been on both for the last 11 years, except for 3 “vacations “ during the first 5 years. My PSA was always <.05 when under treatment until about 2 years ago when it started to appear and rose , but to very low numbers over the course of about a year or longer. I had radiation on the tumor that my MO thought was the culprit for the increasing PSA and went back to <.05. Recently , PSA appeared again and last 9 months measured it at: .05,.06 and again at .06. Still taking Lupron and Abiraterone.

fzpinc1 profile image
fzpinc1

You really NEED to be consulting with a urologist about all of these things.

Nfler profile image
Nfler in reply to fzpinc1

MO is far more advanced in pca trx than a urologist…

Nfler profile image
Nfler in reply to fzpinc1

WOW now your really talking with the blocking of the glutamine from the Middle East portal, who would’ve thought. I knew there had to be a better way than shutting down one’s testosterone, knowing that it doesn’t kill pca n quits working after awhile. Common sense tells us it’s just not right to deplete someone of their t, especially when it’s not the cure. Glutamine blocks sounds so much more logical, maybe even better than ivm, we’ll see thanks…

TEXAS_dan2022 profile image
TEXAS_dan2022

Had RALP surgery in Nov 2015 and had radiation in summer of 2016. Have been on Abiraterone and Lupron therapy continuously since April of 2016, with a short 'holiday of about 7 months' when I stopped them both but had to go back on them when my PSA started being 'detectable' again. Still on both.

You may also like...

Abiraterone added to Lupron

years wit PSA rising steadily. He said 3 months ago that lupron will be started again soon. Lupron...

Anemia on Abiraterone + Prednisone + Lupron

November 2023 I have been taking Abiraterone + Prednosone for castrate resistant metastatic...

Abiraterone SE when added to Lupron?

am a PSA =2, low volume, oligometastic HSPC. I got my first Lupron shot 4 weeks ago. I started to...

Orgovyx vs. Lupron, (with Enzalutimide or Abiraterone).

Hello all - I was hoping someone has some insight for me. I just started ADT which consisted of a...

Lupron, Abiraterone and Prednisone...constant bruising

Currently have a PSA of 0.20 (up from 0.15 in May of 2022. Treatment plan of Lupron, Abiraterone...