Is ADT killing me through the side effects? Therefore are the DR's or am I kidding myself. ADT or not?
Is ADT killing me?: Is ADT killing me... - Advanced Prostate...
Is ADT killing me?
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alangeorge
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83 Replies
•
ADT drugs affect everyone differently. What symptoms are you experiencing?
No side effects with or without ADT
This is a good point they do affect everyone differently but everyone gets tread the same, am I incorrect here?
• in reply toalangeorge
Nope
You are, imho, definitely incorrect.
Some get smashed more than others, a lot more. Some a lot less.
There is a huge difference between being smashed 25% and being smashed 90%.
I don't think everyone is treated same. There are a limited number treatments which are used in different combinations.
When I was first diagnosed I went to Johns Hopkins for surgery and received no radiation. I spoke to some men that went to the Mayo clinic. They received radiation after surgery. It al seems like a crapshoot. Doctors are trying to find the combination that gives the best way to treat Pca.
• in reply toMagnus1964
We are so different yet he same in the big picture.. Merry Christmas Magnus. You give hope to many .🎄
As with any therapy, the benefit should outweigh treatment morbidity. The side effects of ADT are well documented & can be moderated by exercise to some degree.
What are your side effects?
-Patrick
pjoshea13 I have non
I exercise in moderation every day and my amassed array of anticancer things to eat is massive
It's highly individual, but generally speaking if you're diagnosed with advanced prostate cancer you'll live much longer and have better quality of life with ADT.
Without any treatment, I'd guess most patients with bone metastases would die a slow and very painful death over the next 6-12 months. That has to be your point of reference when judging a treatment. I don't know where some men get this crazy idea that having uncontrolled cancer eating away at your bones and internal organs is preferable to treatment side effects.
Look up the 5-year survival rates for other advanced cancers and compare them to the old statistics for prostate cancer. Many are at or under 10%. Prostate cancer is about 28%, and the difference is ADT. Prostate cancer responds to testosterone, which provides an avenue of attack that simply doesn't exist for most other cancers. And that's not even taking into account more recent developments such as early use of Abiraterone or Enzalutamide.
• in reply totom67inMA
"I don't know where some men get this crazy idea that having uncontrolled cancer eating away at your bones and internal organs is preferable to treatment side effects."
That pretty much sums it up.
Those of us who have experienced symptomatic uncontrolled prostate eating away our bones, reducing us to a lump of flesh barely able to walk, waking up at night in pain, barely willing to eat would never say things like "I want to go off ADT to improve my quality of life."
• in reply to
Don’t know about anybody else but that helps me understand what I’m facing better than any dr. has told me. Thanks
alangeorge• in reply to
Why is uncontrolled if you're not on ADT. Are you saying you do nothing to help your self? You just leave everything to the ADT ?
• in reply toalangeorge
I was diagnosed at stage 4 with about 6 months left to live. I was pain free in 3 weeks after starting ADT. It literally brought me back to life.
For those in my situation, ADT is pretty much a matter of life or death. All of the best treatments for prostate cancer are based on its sensitivity to hormones. That's why ADT is effective in over 90% of those diagnosed at stage 4. This is also why stage 4 prostate cancer has longer survival times than most other stage 4 cancers.
• in reply to
I too wouldn’t be here without the dreaded adt... but we came from a more difficult start with APC than this man with no symptoms . Merry Christmas 🎄🎁
• in reply to
Thanks, I need to be reminded that not everyone is in our situation. I sometimes feel a need to defend ADT because it saved my life, but not everyone's life is being threatened by PCa. Many will never need ADT or can do it intermittently.
• in reply to
#4 is whole other ball of wax baby. People don’t realize it unless it happens to them . Take care
• in reply to
That’s a fact Jack!
• in reply to
Its only the one that hasn’t been in the jaws of APC yet. They don’t know..Once you’ve had it’s teeth in you your opinion will change towards this brutal disease .. I wish I had caught it before it ran over me..
Generally speaking by whom tom67inMA? Seems to be a lot of general speaking on both sides, this is what I needed. Thanks!
Generally speaking by the stampede study? No wait, that was early use of Abiraterone. Not sure where they keep the original studies for Lupron vs. nothing.
I expect the sides will be the "advanced symptomatic" people (including myself) vs those without symptoms and a gradually increasing PSA.
Of course, if you don't have cancer and take Lupron, it probably will shorten your life due to the side effects.
• in reply totom67inMA
No cancer and taking lupron? That guy would be a child molester. Only other reason I’ve seen it used for. I think the original reason. What a group we are in.
tom67inMA• in reply to
Wow, never thought of it like that! 
I was hoping it was a hypothetical situation, and just trying to acknowledge that yes, Lupron can do horrible things. But I still think, for me, it was a miracle drug.
• in reply totom67inMA
For me too. Just heard a case where they castrated medically a pervert. Same method and I can tell you it worked on me.
• in reply to
I chose castration myself . F APC..
• in reply to
All jokes aside did castration let you stop the lupron. My doctor says you still have to take the pills even with castration.
• in reply to
Yes Sir, that was the point..I stopped Lupron but yes I’m
Still on the Tak-700 pill form that stops adrenal production..
• in reply to
Good to know nothing changes
Yes it is, so are many other things.
You don't specify what you are experiencing on ADT, so it's hard to answer your question.
Lupron was killing me; it was definitely far worse than the disease. Despite what others claim, the evidence that ADT significantly prolongs life is slim at best, particularly when the treatment is "standard of care," which is doctor-speak for "same damn thing we do to everyone." Just giving ADT until it fails probably does not extend life, at least by much, and may shorten it. Suicides, strokes, and heart attacks from the stress and depression of ADT are not counted against the drug, but are certainly part of the cause of those deaths.
ADT is officially palliative treatment, not curative or life-extending. For men with severe pain from bone mets, ADT can be a big improvement. For asymptomatic men, ADT is a huge reduction in quality of life. How huge varies from one man to another.
I found that Zytiga without Lupron to be far more tolerable than Lupron alone. In particular I wasn't subject to the deep depression and intrusive thoughts of death that came with Lupron. It's still castration and still a terrible reduction in quality of life, but better than Lupron.
There's some very good theoretical and clinical work being done at the Moffitt cancer center, where they take men on and off ADT rather than just give them the maximum tolerable dose until the drug fails. Two clinical trials are underway and more are planned. Initial results are quite promising, with men suffering from mCRPC given intermittent Zytiga going at least 34 months to failure compared to 14 months for men given Zytiga standard of care.
moffitt.org/research-scienc...
ncbi.nlm.nih.gov/pmc/articl...
They find among other things that the total dose of the expensive Zytiga is reduced by half or more. The quality of life implications are significant but haven't been formerly studied as yet.
It's your body, your life, and your choice. Don't let doctors, relatives, or internet sages bully you. You have choices the doctors won't tell you about. Only you can decide what is the best balance between trying to extend life and quality of that life.
Good luck to you!
BING- f$&@ing- GO
I’ve been talking to the wall!! I’ve proved to myself that a 3mo dose of Eligard, kept me AD for over 5 mo’s!!! Once Eligard was stopped, I was still full blown AD for >9mo’s, at 12mo’s my T started to rebound above castration!!! Why did I need a shot every 3mo’s!!! Why not bloodwork @ 5 or 6 mo’s to check my T & PSA? Because Big Pharm said so.......that’s why (SoC) !!! Maybe I wouldn’t have ended so f’ed up if they gave me closer to the minimum instead of cashing in with the maximum!!!
Jc
Big Pharm certainly gets a share of the blame, but there is more than enough to go around.
Doctors are not scientists, although many like to think that they are. They are technicians. They are no different than the people who fix your cars. They have training and tools, but they are not scientists. They are trained to diagnose a problem and then apply a solution - that they did not devise and don't necessarily understand very well.
The people at Moffitt put actual scientists to work thinking about how to treat cancer. It really isn't very hard to figure out that just giving a drug until it fails is probably not the best strategy. Heck, I figured that out years ago. I am a scientist, but not a medical or biological scientist. Still, it was fairly obvious that the SoC strategy was fatally flawed. Not just for prostate cancer, for pretty much all cancers.
So yes, the SoC happens to provide the greatest sales to Big Pharm. But if doctors had turned to actual science instead of the voodoo they practice every day, this nonsense would have stopped long ago.
I agree to you Jimhoy and when I try to talk to the Med people, I get no one to listen and it even seems like they don't care what I have to say or what I think By the way I am at 10am now and most of you are going to bed. The world is upside down to me. Why is so hard to get the bloods done, my Dr' refused it was a power struggle, I got 2 referrals from my Onc.
I am also getting no credit for what I do to help myself :(((((
Sometimes you get more sense from the wall and at least it listens. At the end of the day the wall stands for itself and of strong can last for ever.
Alan
• in reply toalangeorge
I’m not a Doctor . Just a guy in the trenches with over 4 years of life given in big part to adt . No man likes this . For me it was life or death . Life including adt was my choose. I flew into a complete remission with no signs of pc and PSA undetectable . Coming from k failure and a year and a half with tubes and a foley . All my doctors are elated . Adt side effects are devastating for me..But I’ve had over four years so far that I wouldn’t have had without it . If you came from my position and had APC running rampant and shutting you down . You’d understand It then .. I recommend adt over APC any day of the week.. Good luck to you . You will do what’s best for you . Scott
alangeorge• in reply to
Thank you so much everything is so relative... Thanks You Scott
Good luck my friend
This is my point thank You.... I have no side effects either way, I was fit and healthy before this but now after the effects of my own life changes; I actually feel fantastic every morning I mean every morning. I look great and feel great. Everyone comments as I am 72 and don't feel it. The research is what's killing me :))
You havent...or i didnt see how long on adt....i was kinda ok for a year and then wham....in one month i was f'd up...crazy thoughts..body morphed into homer simpson...bone aches....no longer a cake walk...but a frigging death march....b.w.
I have to ask: Did you have any other medication changes? I'm on so many drugs it's hard to separate the effects of one from the other, though I do suspect Xgeva is my kryptonite.
• in reply toBoywonder56
Wham! I got hit by the same hammer .
Thank You FCoffey. I am experiencing nothing either way on or off. I have had 2, 3 month injection and took a month off in between. I thought the nurse was going to kill me for that month off :))
re "Suicides, strokes, and heart attacks from the stress and depression of ADT are not counted against the drug", yes they are!!! It's the reason why overall survival is used as an endpoint in most studies. Overall survival completely ignores quality of life (and that's the biggest complaint against it, IMHO), but it does take into account all causes of death.
You state that "ADT is officially palliative treatment", which is true - but I get the sense that many men feel that it is better to start it early. Considering that classic ADT (e.g. Lupron monotherapy) fails within 18-24 months for most men, & induces adaptations that are hard to manage, I have never understood the belief that early is better.
15 years ago, I decided to delay Lupron until I needed palliation. I don't regret that.
If there existed a combination of drugs (including ADT) which virtually guaranteed me another dozen years, I'd start it today, but we are still in the short-term palliation era.
-Patrick
A new paper was added to PubMed today that shed some light on patient expectations from systemic treatments for metastatic prostate cancer:
"One third (33%) of participants believed treatment was at least a little likely to cure their metastatic cancer. Most participants believed treatment could provide symptom relief (76%) and extend life expectancy (95%)."
"A large proportion of patients with metastatic prostate cancer reported beliefs inconsistent with understanding that treatment was not curative."
ncbi.nlm.nih.gov/pubmed/318...
This might explain why men are sometimes eager to start ADT early.
-Patrick
Simple answer is Yes, No & Maybe. There are a few ways to achieve ADT!
Leuprolide Drugs: As far as I am concerned......F&$K YES!!!!!
Estrogen Patches: Not so much but may cause cardio issues. Your call!!
Snip snip: They say lesser of all S/E evils, but it’s permanent!!!
Eligard has taken 2 1/2 years from me already and it’s not done yet!!! Does it’s use giving me 5 (?), 10 (?) 15 (?) more years like I am, be considered success, They’ll say yes.
They tell me that XRT eradicated my cancer and ADT was just “Insurance”!!
So I sit here unemployable, with debilitating pains floating from joint to joint, as dumb as a fucking stump, fat as a well fed tick, a grouchy fucking eunuch, but I’m not bitter!!! Hay, I’m breathing!!!!
Want me to go on for an hour?!!!
Jc
PS: Some lucky bastards walk through with out a scratch.
• in reply toJimhoy
Reality sucks but the breathing part is nice.
Jimhoy• in reply to
Boils down to the quality or quantity question!!! I’ve been told (after the fact) that ADT adds 3 to 10% increased success rate depending on the salesman / Urologist you talk to!! Stress AFTER THE FACT!
Jc
Thanks Jimhoy... My problem is being handcuffed from the minute they strike gold in you. Meaning never guide to all the possibilities!!!!
• in reply to
Breathing is amazing! I don't think anyone on ADT gets through it without a scratch.
It's definitely not a picnic, it's just better than being being tortured by cancer.
I may well be one of the lucky bastards walk through with out a scratch, at least for now. I am writing a book... the title is "The Chair in the Doctor's Office" Can I quote you?
JImhoy put your energy into you self talk differently
Quote away brother!!!
Don’t quite understand you last line!! Likely on my end but.......
Jc
I had the "snip-snip" which is a VASECTOMY in 1978 at age 28. I had my "yank out the boys" bilateral orchiectomy in 2015 instead of ADT. Didn't want no stink'n drugs put into my body screwing around with this fine tuned bicycling machine. ;0) My doc also thinks outside the box and has me on testosterone.
Had yesterday's bicycle ride of 100 miles and Thursday's Cold FULL Moon ride of 160 miles. A little artificial T and I don't need no stink'n balls to ride.
I had the first snip snip in 1990.
Last full moon of the century!!! They must have a name for it!!!!
Peddling ass is illegal here!!!!
Keep it up!!!!
Jc
Official name was indeed the "Cold Full Moon" at 12:12AM on 12/12/2019. I was out riding for the moon rise at 5:17pm 12/11, the full at 12:12am AND the moon set at 7:15am.
It was bright enough to see in the afternoon!!
I’ll take your word for the rest!! I crash @ 8PM!!!!
• in reply toaddicted2cycling
Ride On. Better biking without the balls. I did the orch 2016. I’m interested in your T routine however. How does that work for you ?? 🚲
addicted2cycling• in reply to
Bi-weekly shot is prescribed. T normalizes 400's/500's. Immediately post shot T is 1600 and when I screwed up(forgot) almost 2 weeks late T was 26. NEVER some sort of a rush of strength following shot more of a better recovery from biking as muscles are happier. Have had sweats and hot flashes return when late for shot and also that "body telling me that things just aren't right" sensation - - subtle but there. Wife sees it in me, married 46 years.
• in reply toaddicted2cycling
Does insurance cover the shots? Do you happen to know their cost without insurance?? Thanks you 😎
addicted2cycling• in reply to
I have Medicare and my Co-pay for 6 shots is $105.00, sorry but I never checked what counter price is.
p.s. -- thanks for asking, I am too complacent about the shot schedule and I forgot to order my next series.
• in reply toaddicted2cycling
I’m on Medicaid . That s darn cheap .. thank you GOOD LUCK
addicted2cycling• in reply to
Good luck back at you and questions just ask. ;0)
I had subcapsular orchiectomy 4 weeks ago, MO thought it the better option for me, besides the hot flushes have been brutal to me (so bad I have to change clothes several times a day), High blood pressure and horrible pain. Wont be till Jan when the ADT wears off but eager to see what the difference is.
It's not an issue that I cannot reverse the procedure, I'm so far down the line I have zero chance of any holidays or remission
• in reply toZetabow
I did the chop chop in 16 ... although I’m considered in remission . No-body but no-body recommends a vaca for me..😂
No issues here about being gone forever ;0) AND the added comfort on the bicycles is AWESOME!!!
• in reply toJimhoy
Hahaha wtf? Did you Peek at my notes with that paragraph about Unichs.. ? Enjoy your night.. 😎
I developed high blood pressure this summer, GP has it under control with medication, pretty sure it's the ADT
Thanks Zetabow
• in reply toZetabow
I agree ..
Working hard towards my heart attack. No statins for me.
alangeorge• in reply to
I just started up on my Statins after 3 yrs off. I read it's now proven they help fight ADT?
My first visit with a surgeon was an eye opener for me. At the time we just cut it out and all is well. He said let’s get it over with so you can go on and have your heart attack. Good guy and so right. Then I had the mri that ended any chance for surgery. The rest you know better than me.
Boywonder56• in reply to
My case exactly....and i asked :what if i do nothing....reply 2yrs max.....i did something...lupron and titan trial...lucky i was getting med.( earleda)...not placebo....and 3yrs later im still kicking..kinda......bw
I believe this may be true. But everything is over determined.
No, ADT nor any other treatment for metastatic cancer is not killing you. It is helping you to beat the bastard! Side effects be damned, the alternative is not very pretty.
Gourd Dancer
They gave me 5 years in May 2014. Lupron since then and Xtandi for 33 months now.
Undetectable PSA and clean scans last visit. Onc at Mayo says he can’t explain it but very happy for me/us.
Now we have a granddaughter and a wedding coming along with our other daughter married a year ago. Ya I have major fatigue and bone/joint pain but it’s the new normal. I build stuff I’m my garage, cabinets and trinkets for my wife, and it’s fun. I would have missed all of this without ADT. I’m happy to be alive.
• in reply toSurvivor1965
Rock on from 65!🥳🥳🥳🥳🥳
I have the same question. The cardiovascular side effects are really serious. Lupron caused a big increase in my lipids, had to double the dose of atorvastatin. The conversion of muscle to fat (despite gym sessions 3x a week) continues unabated.
My urologist wanted 3 years of ADT. My radiation oncologist and medical oncologist were talking 2 years. The papers I found on 18 months being as good as either of those are what I'm going by.
G9, 2t2 NO, MO. 45 IG/IMRT/ARC, PSA currently undetectable.
I was reading a very recent paper today that found that cardio events (strokes, heart attacks, etc) are 30% more frequent in people on long-term ADT.
That pretty much gave me pause...
Just an update - had a visit with my radiation onc, this morning, he's a bright young man who is happy to sit and discuss things - he doesn't seem to stick to a 15-minute schedule if he happens on something interesting.
We discussed the 18 month and done - he said he's 100% for it. Not so much because of the studies I provided (although I'm sure those helped) - but he said more for the quality of life for the patient vs the possible benefit that extending the ADT might provide. His feeling is - the benefit - if any - is really minor by extending ADT to 24 months (especially when the patients PSA is undetectable.) He knows I was really a pretty active guy before this hit, and haven't really been able to do the same physical stuff that I used to. His feeling was the overall survival is likely to be the same - and the difference in quality of life is what makes 18-month treatment a valid choice.
My major complaint are my TITS....and people asking me if I'm breast feeding..
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 12/17/2019 6:35 PM EST
Just get a-training bra my boy j-o-h-n
GL + GH + GH = j-o-h-n
Good God, Good Boy, Good Night ;))
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