ADT side effects: I was recently... - Advanced Prostate...

Advanced Prostate Cancer

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ADT side effects

Bushido9 profile image
Bushido9

I was recently diagnosed with prostate cancer, Gleason 4+4=8, Biopsy in 1 out of 12 sectors, no spread of cancer into lymph or abdomen, no bone cancer. Prognosis is low dose radiation with 3 months ADT prior and 18-36 months ADT thereafter. My girlfriend is not keen on the ADT-thinks it will turn me into a raging maniac. Any feedback would be appreciated.

137 Replies

I have never heard of anyone falling on the and frothing at the mouth.

Bushido9 profile image
Bushido9 in reply to Magnus1964

Since I was diagnosed in February, it has been my naïve understanding that ADT was generic, like buying propane. I was not aware of the multiplicity of Pharmacopeia to reduce testosterone pre radiation therapy, and perhaps pre surgery. I would like to shrink my prostate and get it out of my bladder before I start blasting it with high frequency sound or radiation. Any suggestions?

Magnus1964 profile image
Magnus1964 in reply to Bushido9

If you have not been on any ADT drugs, I would recommend casodex pre-surgery. It is an older drug with fewer side effects. If needed after surgery, you can consider zytiga or xtandi.

Bushido9 profile image
Bushido9 in reply to Magnus1964

thanks. I'm seeing my urologist in 2 hours to discuss.

Lulu700 profile image
Lulu700 in reply to Bushido9

Adt will help you to do so. That is why they start you prior to Rt. It can shrink pc .

Kaliber profile image
Kaliber in reply to Magnus1964

( falling on floor frothing post part )

Yea .... that’s right ... huh .... but ......... if you do, and I’m not say’in I would, I’d prolly add in some jerky arm and leg motion for effect .... that really spices things up for the crowd in the room. The opportunity for excellence in performance art is often overlooked.

Just say’in 😂😂😂😂

You may get moody, but I wouldn't call it a "raging maniac."

Bushido9 profile image
Bushido9 in reply to Tall_Allen

I'm already moody. 😇

Tall_Allen profile image
Tall_Allen in reply to Bushido9

You might cry during most movies and develop a taste for chick flicks. Your wife might like the change.

Bushido9 profile image
Bushido9 in reply to Tall_Allen

I already cry at movies and like some chick flicks. I also like 700HP muscle cars, fast motorcycles and when I used to "play" with the SEALs, they called me Gorilla.

Bushido9 profile image
Bushido9 in reply to Bushido9

pipeburn.com/distinguished-...

Lulu700 profile image
Lulu700 in reply to Tall_Allen

😂

Bushido9 profile image
Bushido9 in reply to Lulu700

Chicks like it when you cry at movies. I'm having to tell you guys this at 70???

Lulu700 profile image
Lulu700 in reply to Bushido9

Practice Bushido ! 😂

Bushido9 profile image
Bushido9 in reply to Lulu700

I. Rectitude or Justice. ...

II. Courage. ...

III. Benevolence or Mercy. ...

IV. Politeness. ...

V. Honesty and Sincerity. ...

VI. Honor. ...

VII. Loyalty. ...

VIII. Character and Self-Control.

Being polite was easy when young, not so much as I grew older.

Lulu700 profile image
Lulu700 in reply to Bushido9

This is the test of life in aging and suffering . Not to go out with anger . I will refuse to show regret or anger to anyone now . Life is too short .

Lulu700 profile image
Lulu700 in reply to Bushido9

You’ve suffered through so much already. I am sorry that your here now. You’ll get good info from others in similar shoes as yours. Hang in there , it’s a bumpy road. Not your first rodeo !🏍💪

Anomalous profile image
Anomalous in reply to Lulu700

So are we the rodeo clowns?

Lulu700 profile image
Lulu700 in reply to Anomalous

Yep! “ send in the clowns” turn that frown upside down and learn to sing and dance in the rain 🌧 is us!😂

Lulu700 profile image
Lulu700 in reply to Bushido9

8 steps to succeed

Savoy profile image
Savoy in reply to Tall_Allen

Trust me...you will NOT turn into a raging maniac. That’s a guarantee

Kaliber profile image
Kaliber in reply to Tall_Allen

Yea ....yea that’s right .... you got it. I resent the implications of “ raging maniac “. Call it what it really is ..... “ seething lunatic “ ( see how much more smooth and apropos this is )....... that’s the real term. Casting aspersions by saying maniac just isn’t right for us type of guys. Sheeeeeeeeeesh .....

Just say’in 😂😂😂😂

Bushido9 profile image
Bushido9 in reply to Kaliber

OK. Seething lunatic. True confessions, I enjoyed the pleasure of women all my adult life. I expected to maintain this quality of life until my demise. Why has prostate cancer become an epidemic? Two weeks ago, my neighbor came over. He's 74. We had not talked since I was diagnosed. I told him I had prostate cancer. His response: "Me too. Just found out today." What's the probability of that happening. Our communal well was recently upgraded. Makes me wonder if someone dropped carcinogenic solvent into the water. "Better living through chemistry" is a joke. Talk to folks in Kentucky about Teflon.

Kaliber profile image
Kaliber in reply to Bushido9

🎼 lunatic fringe , twilights last gleaming “ ( red rider ).

This PCa crap can drive anyone nuts and destroys families.

Just say’in ❤️❤️❤️

Bushido9 profile image
Bushido9 in reply to Kaliber

Very true.

Lulu700 profile image
Lulu700 in reply to Kaliber

Bravo brother.

Kaliber profile image
Kaliber in reply to Lulu700

❤️❤️❤️. Love ya ...

Lulu700 profile image
Lulu700 in reply to Kaliber

Luv ya man!

❤️

Lulu700 profile image
Lulu700 in reply to Bushido9

Now you’ll learn to enjoy compassion and pure plutonic love from a woman. You had good run at sex it sounds like to me. With adt the thought will never cross your mind again. Time to start bird watching or others hobbies. I was enamored with the female form since childhood. I still am. Now I’m just in admiration. I was 53 now 60. At least you had it 20 yrs longer than I. Adt sucks and so do all treatments. You’ll be diminished and depleted in many ways. This is when unconditional love counts the most.. This doesn’t mean that we need to stop loving woman. The only reason I’m alive is her . Love saves the day . In any form . Good luck Sir!🌵

Bushido9 profile image
Bushido9 in reply to Lulu700

I lost my virginity in Paris when I was 16 with a voluptuous Italian woman in her 20's. I am a firm believer in apprenticeship. Looking back, I have regrets. There are women that I was not intimate with for reasons that melted into meaningless as time passes. That said, I've never been a fan of just f*cking. Sex without love, compassion, intimacy is not a meal, just empty calories. I am fortunate to have a woman who appears to truly love me. Wives and girlfriends over the years... some I rejected, others rejected me. I have learned from all of it. My current "wife" is pretty adamant about keeping me alive. I was vegetarian for 50 years. Now I'm vegan, mainly organic, avoid plastic, live in a rural area with good air quality. My vice is motorcycles, an addiction. I still have a lot of living to do. My things to do list is quite full.

Lulu700 profile image
Lulu700 in reply to Bushido9

Dam fine story. Keep those coming please? She does love you . You will need her love now more than ever . My wife saved me. Like yours , Shes adamant that I do everything in my power to stay with her longer. I owe her this. That’s what APC treatments are about to me. Extending life . This is a terrible fear for our partners. Everything will change with chemical castration. But I feel that you’ll handle it better than I did.

Kaliber profile image
Kaliber in reply to Lulu700

👏👏👏❤️❤️❤️

The main side effects of ADT are hot flushes, tiredness, and loss of libido (sex drive). They seem to me to be like the opposite of a raging maniac. The side effects can be countered. Exercise won't restore all of the strength and energy you had before treatment, but it will make a significant difference. If the hot flushes are very bothersome (I got one minute or so of flush each hour), there are drugs that can counter them. If your girlfriend like sex, the libido problem will bother her. You won't likely feel any sexual desire or arousal at all. However, if you force yourself to do what she likes (i.e., oral and manual sex), you may not only satisfy her, but also find yourself getting aroused by her arousal and enjoying sex in the normal way. Once you stop ADT you should make a pretty good return to your pre-ADT state.

There is evidence that ADT improves the odds of success with radiation. It weakens the tumor cells and makes them more vulnerable to radiation. It also helps kill off remaining cells that survived the radiation. Most of the benefits happen for about 6 months of treatment. From then on there is a gradual tailing off of benefit. The benefit after 18 months is likely to be only a tad less than 36 months, and 12 or even 6 months can be done if you really hate the ADT (I don't think I've ever heard from anyone who likes it) It's taking a risk but maybe not a very big risk.

Good luck with whatever you decide to do.

Alan

Anomalous profile image
Anomalous in reply to AlanMeyer

Someone else I know mentioned that ADT should be reserved for after radiation because the cancer cells are more vulnerable when they are replicating. Does that make sense? I started six weeks before my first radiation. I felt like that may have been to stop the cancer while they fit me in

AlanMeyer profile image
AlanMeyer in reply to Anomalous

I don't know if it's true that radiation is more effective when the cells are replicating. It may well be true, but I don't think that, even if it is, that ADT should only start after radiation is done. I'm not an expert but here's why I think it's important to use ADT before the radiation starts and while it's in progress, as well as after its end:

First of all, ADT shrinks the prostate gland, making a smaller, easier target for radiation.

Secondly, ADT kills off a lot of cancer cells and weakens others, When the remaining cancer cells are radiated, they are more likely to die than if there is no ADT. That's not to say that radiation alone is ineffective, but clinical trials have demonstrated that for many patients ("intermediate risk" patients may get the most benefit) the rate of cancer recurrence after radiation is measurably and significantly worse for patients who have not had ADT.

Finally, ADT can be given for long periods. There's no reason not to continue the ADT after radiation finishes. We don't have to choose whether to do ADT before, during or after radiation. We can do it at all of those times. ADT after radiation is effective and should be done if a patient matches the profile for it. But that is no reason not to also do it before and during radiation treatment.

I think your radiation oncologist had it right.

Alan

Bushido9 profile image
Bushido9 in reply to AlanMeyer

news-medical.net/news/20200...

AlanMeyer profile image
AlanMeyer in reply to Bushido9

Hello Bushido9,

For those who haven't read it, the article is about a treatment being developed in Spain in which a cancer killing molecule (docetaxel in this case) is bonded to a tumor seeking antibody, and delivered through the blood stream to cancer all over the body. It's like the Lu-177-PSMA treatment in concept except that docetaxel is used instead of Lu-177, and FOLH1 is targeted instead of PSMA.

If I had to guess I'd guess that it will have a similar impact to Lu-177-PSMA. For people whose cancers have lots of FOLH1 it will be a terrific treatment. For others, not so much. We'll have to see which it is and whether it will find and kill ALL the cancer for at least some patients. But, even if it doesn't, it might still be another arrow in the quiver.

Alan

Lulu700 profile image
Lulu700 in reply to Anomalous

You always start the adt prior.

Squirrel71 profile image
Squirrel71 in reply to AlanMeyer

Hi Alan. I am interested in understanding more about the timelines you mention regarding effectiveness of ADT post radiation. My Docs insist I stay on Apalutamide for life. Thanks. Joseph

AlanMeyer profile image
AlanMeyer in reply to Squirrel71

Hello Squirrel71,

The timelines I was describing are for radiation of "local" cancer (i.e. cancer confined to the prostate itself or immediately around it) with curative intent. If radiation reaches ALL of the cancer in such a way that no further treatment is needed, then the accompanying ADT is given in order to weaken the cancer and make it more likely to be killed by the radiation.

In your case, with an initial PSA of 171 (as you reported in a previous posting you made), your doctors must have believed that there is no chance that the radiation would kill all the cancer. I bet they have scans to back up that belief. Now their goal is to suppress the cancer you have left, hopefully for the rest of your life. The apalutamide is not being given as an "adjuvant" to weaken tumor cells that will be radiated, but as a treatment of the cancer outside the prostate. The timelines that I described would not apply to your case.

It may be possible to take "vacations" from the ADT and apalutamide, but there is much debate about how safe that is. Some doctors think it's very dangerous. Others think it MAY be safe for certain patients when applied in certain ways. But these would be vacations for limited periods of time, not for very long times and not for men who are likely to respond very badly to them.

I know this is depressing but, hopefully, it will significantly extend your life.

Best of luck.

Alan

Deciding what to do...I always feel that I'm getting only part of the answer whenever I talk to a urologist or an oncologist. I've been healthy and active all my life until I was run over by a truck 6 years ago. Since then, its been a slippery slope. Last week I learned that low dose radiation scars the prostrate making removal difficult to improbable. Surgery doesn't seem to be a viable solution either. I'm considering an alternative protocol:1. ADT something for a month to shut down the cancer. Gleason 4+4=8 diagnosed in February, with cancer in 1 of 12 sectors/ biopsy. PSA 12.2 as of last week.

2. Start drinking Asea. With a background in science and law, I understand the redox equation. At issue is how does Asea stabilize Nano particles to have a shelf life. There are a number of think tank/research centers around the globe looking into Nano particle redox therapy for cancer treatment. It is an outlier, much like what Pfizer did with COVID vaccine.

3. Undergo HIFU with IV vitamin pack thereafter. A high school classmate, patent lawyer cured Melanoma with High dosage IV vitamin C.

4. Lots of Acupuncture/Chiro/ Exercise/ meditation and gratitude.

I looked into CyberKnife and the Oncologists who perform it in Phoenix were doubtful it would be effective as my BPH is protruding up into my bladder. HIFU may not work for the same reason, but it seems to have less side effects than low dose radiation.

One oncologist indicated that he uses HIFU if low dose radiation fails, but has no history with doing HIFU first.

After that, and based on this website, it seems "Wisdom is acceptance."

I also have glaucoma that cannot be cured. Ergo, the solution is to die before going blind.

Seems prostate cancer treatment has the same objective.

I restore vintage motorcycles as a hobby. Typically, I do frame off restorations but with cancer, I'm beginning to look at what works that I can ride the bike with imperfections. The Japanese call it- Wabi Sabi.

Lulu700 profile image
Lulu700 in reply to Bushido9

I think URos and oncos have different views. A Uro makes the big money by surgery . I wasn’t a candidate for sugery. Mine was pissed and told us so. “I can’t make any money off of you”! Welcome to mod med. My wife was horrified.

AlanMeyer profile image
AlanMeyer in reply to Bushido9

Hello Bushido,

If I were confronted with all the treatment options you are considering, I wouldn't try to make a choice between them. What I'd do instead is try to find the best expert doctor I could find, a man or woman with deep knowledge of science and medicine, deep experience treating patients, and deep commitment to taking care of patients, and I'd listen hard to what he or she says.

One way to find people like that is to look at the U.S. National Cancer Institute's list of "Designated Cancer Centers". These are hospitals, mostly associated with universities, that have done the best research and have the best records of treatments. See:

cancer.gov/research/infrast...

People on this forum may also have recommendations for good docs who work near you.

Your knowledge of cancer biology and treatment may not be any better than my knowledge of motorcycle engine repair (well . . . maybe it's better than that.) Getting real expert help can make a big difference in your odds of success.

Best of luck.Alan

[Hmmm. Maybe you could help me figure out why my old Homelite string trimmer won't start.]

Bushido9 profile image
Bushido9 in reply to AlanMeyer

pipeburn.com/distinguished-...

2021 Distinguished Gentlemen's Ride all over the world for prostate cancer research

HIFU informationnews.cancerconnect.com/pros....

You are facing what so many do, but realize this (as so many don't): the side effects of ADT are not just related to the loss of T, but to the loss of E2 (estrogen) that results as a consequence.

So two possible approaches are, 1) do ADT with high-dose transdermal E2 alone, or 2) do standard ADT but do an add-back of E2 with a low-dose delivery. Of course, you still want to add the weight-bearing exercise as well, because E2 will not preserve muscle mass.

Bushido9 profile image
Bushido9 in reply to noahware

Thank you. Losing T affects a bunch of systems, not just libido and erectile entertainment. I used to be 220 - 240 and easily benched between 225 and 315. After getting hit and run over by a truck 6 years ago, I dropped down to 180 from MRSA. I still can't do a push up. Can't afford to lose anymore muscle mass. This whole ADT thing is a complex equation but every urologist/ oncologist tells me to get on it STAT to put the cancer in a coma.

Lulu700 profile image
Lulu700 in reply to Bushido9

That mrsa is deadly stuff. Amazing you made it .

Bushido9 profile image
Bushido9 in reply to Lulu700

It was touch and go. Had a team of six doctors devise the strategy.

Lulu700 profile image
Lulu700 in reply to Bushido9

😯

Maniac no. Dickless wonder yes

Bushido9 profile image
Bushido9 in reply to Anomalous

Ouch. Thanks for the candid response.

Lulu700 profile image
Lulu700 in reply to Anomalous

Dam That’s cold blooded!

How old are you and how long do you want to live? You don't have radiation listed with no ADT as a possibility. Why not?

Bushido9 profile image
Bushido9 in reply to fluffyfur

I'm 70. My girlfriend is 46. She'd like me around another 30 years. I am expecting at least 15.

Anomalous profile image
Anomalous in reply to Bushido9

Keep in mind about 5 of those years, or a third, will be involved with ADT side effects. The two to three that you take it-I promise you won’t like it at all, but its tolerable, barely-and the two to three years trying to get your T back. Plus Loss of muscle, loss of bone, gain of fat. Thinning hair, dental work, etc. possible heart problems. Testosterone may or may not return.

Bushido9 profile image
Bushido9 in reply to Anomalous

I was a competitive elite endurance athlete in the sweet spot of my adult life and then took up body building in my 40s. I still swam open ocean swims up to 3 miles into my 60s. However, I was hit and run over by a truck in 2014. Months in the hospital. Years in rehabilitation and recovery- still recovering. I suffered loss of muscle mass, bone density, hair issues, skin issues, dental issues, nerve issues, lost my gall bladder, and almost lost a kidney, a lung, and my left leg. I contracted MRSA in my flesh and bones to require a pic dripping vancomycin into my aorta.

Disconcerting to hear that testosterone may not return.

Lulu700 profile image
Lulu700 in reply to Bushido9

Whoa nelly!😳😅

Bushido9 profile image
Bushido9 in reply to Anomalous

Thanks for the reality check. My appointment with my urologist yesterday was a cruel reality: Current proven science of western medicine is to cut off your balls either physically or chemically to prevent the spread of prostate cancer. And then fry you with radiation. In 100 years, maybe less, that will sound as foolhardy as bloodletting does to us.

Anomalous profile image
Anomalous in reply to Bushido9

Agreed, completely. But doctors look at it differently. Survival is their goal. I saw a man at Mayo the other day that reminded me what may be in my future if permanent ADT is in my cards. He was extremely skinny except for his huge belly. The doctors will throw in, as an enticement for you…”while we wait for the cure to come”.

Bushido9 profile image
Bushido9 in reply to Anomalous

That's not quality of life

Lulu700 profile image
Lulu700 in reply to Bushido9

But it is life.

Lulu700 profile image
Lulu700 in reply to Bushido9

That is my path . For me it wasnt so easy . It was either treatments or a rapid certain painful death. No brainer the orch over shots for life either. Drastic indeed.

Bushido9 profile image
Bushido9 in reply to fluffyfur

I have not been advised or offered radiation therapy w/o ADT. I have a consultation with an Oncologist at Mayo Clinic this week. Maybe he will suggest such an alternative?

We don't all have the same reaction to ADT. I am and have been an avid bicyclist. I have had the physical SEs and loss of libido. I have had no fatique and no hot flashes. Nothing has made a big impact on my life. I have maintained a certain level of fitness and June may be my last Lupron inj and October my last Zytiga, should all things remain as they are.

My tumor was protruding into or growing into my bladder. After radiation I am up less than I was prior to it. Not sure what the future holds, one day a t a time.

Bushido9 profile image
Bushido9 in reply to treedown

I was one of the crazy guys who came up with the Ironman and was still doing triathelons into my late 50s. Then I get hit and run over by a truck while stopped on a motorcycle. That ended my competition. Its taken six years to recover, 13 surgeries. The cancer is a by product. So after your radiation, your not getting up to go to the bathroom 4-6 times a night, your PSA is 0 and all plumbing is working?

treedown profile image
treedown in reply to Bushido9

Most nights bed around 10-11 up to pee around 5:30 or 6. If I have a beer or drink a lot of water late I may get up around 3. Prior to radiation 2 times for sure, during radiation 4-6 per night.

That sounds like a real comeback story. How are you doing now after the 13 operations other than the reason your on this forum obviously.

Bushido9 profile image
Bushido9 in reply to treedown

When I was run over and in full time rehab/therapy, I encountered others who were paraplegic from similar rear end accidents. In comparison to being confined to a nursing home and a wheelchair, I'm doing great. To look at me, I do not look like I was in an accident. Before and after photos are telling however. My muscle mass and bone density are way down. My shoulders are shot, so is my lower back. My toes curled making it hard to walk. I was swimming until COVID. Just got back in the water last week. I can walk, but cannot run. I have shortness of breath walking up inclines-BUT- that may be because I'm working/spending too much time in front of a computer. It is/was my ambition to get back in training for a triathlon. My girlfriend gives me articles of guys running races who are 100+ years old. I need rotator cuff surgery. Need to strategize...

treedown profile image
treedown in reply to Bushido9

Thats a lot going on to have PC added to the mix. I wish you the best results in all you do whatever direction you head.

Bushido9 profile image
Bushido9 in reply to treedown

I'm also involved in a property rights dispute with a town outside Phoenix for the last 20 years. Upside is 9 figures. Award of damages in the next two years...or settle for less with certainty w/o further appeals.

treedown profile image
treedown in reply to Bushido9

Wow, sounds like a lot of stress.

Bushido9 profile image
Bushido9 in reply to treedown

It was my life savings. I took peanuts/poverty of social security at 62 to work full time on litigation. Full time means 80-100 hours a week where judges may or may not read what you write. I taught my wife law to help me work full time as well. She has never experienced stress like this. I have-been shot at, played cat and mouse with the KGB back in the 80's... but that's whole different kind of stress. 3 weeks of boredom then 90 seconds of crazy. This is under the thumb of stress 24/7. We just finished two Opening Briefs so I have a bit of time to talk/write/reminisce. Another brief is due at the Ninth Circuit in July...so if I vanish, you know why.

treedown profile image
treedown in reply to Bushido9

Vanish ? I hope you get a satisfactory resolve to your troubles. Heading out for a dexa scan myself. No symptoms I just want a baseline and to see how the bones look after 1.5 yrs on ADT.

Lulu700 profile image
Lulu700 in reply to Bushido9

F the kgb. Good luck in court. May you get justice! 💪

ADT, in the form of Lupron or some derivative really is chemical castration. Your junk shrivels up to all but useless. Lots of exercise helps some other side effects. At 70 well just deal with it as you rediscover more inventive ways to interact with your partner than just falling asleep.Join a local support group so you can personally interact with others at the same treatment point.

2Dee

Bushido9 profile image
Bushido9 in reply to 2dee

My tongue and fingers still work. 👍

Lulu700 profile image
Lulu700 in reply to Bushido9

Loss of libido

Means literally you won’t have desire. It’s a hell of a loss .😳✌️

Kaliber profile image
Kaliber in reply to Bushido9

Google : Oster professional 103 , stim-u-lax. Worth every penny ......

Just say’in 😁😁😁🥳🥳🥳

Bushido9 profile image
Bushido9 in reply to 2dee

I'm looking into other solutions than adt

2dee profile image
2dee in reply to Bushido9

In MY case the SOC was a choice of one treatment. ADT, in the form of Lupron. Otherwise my first MO said go home, get your things in order, and review hospice. That was 2018, PSA at 1303 and climbing a point a day. Fully metastasized throughout my entire skeleton.

For ME ADT has significantly extended my life while giving me some nasty side effects. Alternatively I wouldn't be responding to your post.

2Dee

Lulu700 profile image
Lulu700 in reply to 2dee

2Dee of not 2Dee ? The answer is clear to me . 2Dee rock on 👍

2dee profile image
2dee in reply to Lulu700

That's 2Bee

Lulu700 profile image
Lulu700 in reply to 2dee

I’m applauding you all of the way. 2Dee ✌️

I was diagnosed with PC Gleason 8 some twelve years ago, and treated with radiation, combined with ADT.I had Casodex 150 prior to radiation, which was then reduced to Casodex 50 after radiation, but was continued only for app. 3 months after radiation, probably because of good results with PSA level, and less experience compared to now, 12 years after.

I had recurrent PC detected in 2019, and has basically been on ADT ever since.

My recommendation to you:

- I think the results of my initial treatment 12 years ago was good, only error was too short time on ADT after the radiation. This should probably have been 12-24 months, to kill cells in any undetected area.

- My ADT has been focused on Casodex all the time, with good results. Obviously, side effects with Casodex 150 are stronger than Casodex 50, therefor I recommend to reduce to Casodex 50 soonest possible, say around 6 months after radiation.

Be sure to combine the Casodex with 10 mg Tamoxifen, otherwise you will have severe breast tensions, and consequently end up with A-size breasts.

Good luck!

Anomalous profile image
Anomalous in reply to PCPatient

Does it kill them or make them adapt into something more resistant. Thats my question

PCPatient profile image
PCPatient in reply to Anomalous

Good question! I don’t think there is one answer only.My recommendation to secure a 12-24 months ADT after radiation, is to increase the chance of this.

It didn’t work for me, which could be because my period of ADT after radiation was too short?

It all off course also depends on whether the PC is isolated and treated in the Prostate. If it has already spread outside, but not detectable at the time of radiation, the risk of recurrent PC is obviously higher.

I am not an expert, I only talk as a PC patient, but basically I would say the ADT at lowest acceptable level has worked pretty well for me. It has not cured my PC, but it had kept it at a controllable level.

Anomalous profile image
Anomalous in reply to PCPatient

Its like when I had a bcr after Tulsa-Pro. I asked the urologist if i made a mistake and he said it probably didn’t matter what treatment i used. Some of us just have to keep after it and then eventually it kills us

Bushido9 profile image
Bushido9 in reply to PCPatient

Thanks for the heads up about a longer ADT run.

Lulu700 profile image
Lulu700 in reply to Bushido9

6 yrs for me and running. Without treatments I was a goner. It’s all gravy. Even with no labido.

Kaliber profile image
Kaliber in reply to Lulu700

You’re supposed to wipe that “ gravy “ off your chin before it drips all over the place .

Just say’in 😂😂😂😂😂😂

Lulu700 profile image
Lulu700 in reply to Kaliber

Ride it!

AlanMeyer profile image
AlanMeyer in reply to Anomalous

Anomalous asked:

> Does it kill them (i.e., cancer cells) or make them adapt into something more resistant?

I'm not an expert and I could be wrong but my understanding is that the answer to your questions is:

Yes, it kills many tumor cells.

Yes, it makes the remaining tumor population more resistant.

Here's what I think is happening:

After ADT, various types of scans show that tumors have shrunk. In most metastatic men, places that were painful and that showed bulky tumors on scans now are less painful or not painful at all, and show up smaller or not at all on new scans. That indicates that many tumor cells have died. For most men, PSA drops significantly on ADT and may become undetectable. That also suggests that tumor cells have been killed. If and when PSA begins to grow again, it grows over time, not all at once. A man with a PSA of 100 that drops to 0.1 on ADT will, if he stops the ADT, not suddenly increase to 100 again. His PSA increases gradually, to 0.2, 0.3, etc. That too indicates to me that the recurrence of the cancer is due to a gradual regrowth of new cancer cells, not to a sudden re-awakening of cells that were merely put to sleep by ADT.

However the new population of cancer cells after the ADT stops killing tumor cells is more resistant. The reason for that is simply that the cells that are resistant to ADT are the ones that survived it. They are the cells that are still dividing and multiplying. The others were already killed off. Cancer cells, much more than healthy cells, have DNA repair and other defects that increase, sometimes greatly increase, the number of random mutations when cells divide. Some of those random mutations contribute to the ability of the cells to survive the loss of testosterone and so result in resistance to ADT. They dominate the new, resurgent, cancer. These mutations have been happening even before the ADT treatment, but they never came to dominate the tumor cell population because there was no ADT killing the tumor cells and leaving ADT resistant cells as the only remaining population.

Is this a reason to not undergo ADT? I don't think it is, unless you want to get the benefits of ADT later rather than earlier. If you never have ADT, what would it matter if you never develop resistance to it?

The same process occurs with all of the other treatments too. Unless and until our scientists find a treatment or treatment combination that kills ALL of the tumor cells, each of the other treatments will also result in treatment resistant cells being left alive to reproduce and become the dominant type of cancer.

Alan

Anomalous profile image
Anomalous in reply to AlanMeyer

Makes sense. Its also why I wonder why the big push to use ADT early rather than later. Kind of a pay me now or pay me later Hobsian choice

AlanMeyer profile image
AlanMeyer in reply to Anomalous

> I wonder why the big push to use ADT early rather than later.

An excellent question.

20 years ago, it was thought that men should wait and only start ADT when symptoms developed. The idea was that ADT had a limited effect and we might as well save it for when we were in real trouble and seemed to need it most. The same thinking was applied to other treatments. Zytiga, Xtandi, Taxotere all have limited effects. Let's get all the benefit we can from ADT, then apply one of the newer treatments, rather than waste the newer treatment by applying it when ADT was still working.

However, after that, empirical studies showed that both those ideas were wrong. On average, ADT is actually more effective earlier than later. Men who took it earlier actually lived longer than men who waited and took it later. For some patients (not all) combination treatments (e.g., ADT + Taxotere) taken early also enable men to live longer than if they took one after the other, waiting until the first one failed.

I'm not a scientist but my understanding of what is going on is that, the larger the population of cancer cells, the larger the number of mutations occur. It's not necessarily the case that the rate of mutation is higher, but the number is. If treatment resistance mutations occur once per 100,000 cell divisions (I'm just making up the numbers here), then a population of 10 million cells will produce one thousand times more treatment resistance mutations than 10 thousand cells in the same period of time. So if ADT, or a combination of ADT + another treatment, can drive down the population further in a patient treated earlier, it takes more total time for that patient to develop resistance. In the case of the combination treatments, an additional factor is that some combinations of treatments may kill many cells that neither treatment alone will kill, driving down the tumor population further. Also, for some types of treatment, when resistance to ADT develops, it will confer resistance to some similar treatments as well, so the secondary treatment will be less effective than it would be if it were taken at the beginning along with the ADT

Unfortunately, not all treatments work especially well together and, as we add more treatments to the mix, the combination of side effects can be severely toxic.

Alan

Bushido9 profile image
Bushido9 in reply to PCPatient

Was your Gleason 4+4, 5+3, or 3+5? My oncologist recommends ADT for at least 18 months, preferably up to 36 months, but has not specified the brand of ADT. I'm meeting with my urologist today as he administers the shot. And here's the catch- is the Doctor recommending a certain brand of of ADT because he gets a kick back, or because its the best chemical to put in my body? I'm in Tucson. There also appears to be a referral system between urologists and oncologists... capitalism in medicine has "side effects."

PCPatient profile image
PCPatient in reply to Bushido9

My Gleason was 4+4. 18 to 36 months on ADT sounds good. As recommended, get down to 50 mg doses as quick as possible, and monitor PSA on a regular basis, say every 3 months. Value of PSA should be an important factor in deciding the final duration of ADT.

Lulu700 profile image
Lulu700 in reply to Bushido9

Tucson wtf? My ol stomping grounds. I’ve got the best naturalpathic oncologist in Tucson Dr Michael Uzick on Campbell ave. I ve gone to the u of A cancer center over six years now. Now banner Corp.

Bushido9 profile image
Bushido9 in reply to Lulu700

Yep. Tucson, but no one does HIFU in Tucson, so I spent all day in Phoenix yesterday finding Urologists who perform HIFU. HIFU does work for Gleason 8 but it requires shrinking the prostate first. It seems I have a urethra stricture that has been misdiagnosed since the accident in 2014/ not diagnosed at all!

Lulu700 profile image
Lulu700 in reply to PCPatient

You give many of us hope with those 12 years . Thanks 😊

You might like to look at this from the National Library of Medicine, where the conclusion evidently is ADT is of no benefit. pubmed.ncbi.nlm.nih.gov/292...

Good luck with whatever you decide.

Bushido9 profile image
Bushido9 in reply to Masirah

Thanks! I'm looking at HIFU first, then IMRT, not EBRT. I appreciate the research paper. We've got to remember there was a time, that the accepted solution for curing illness was leeches removing "bad blood." Hormones affect much more than just what doctors are looking to accomplish in slowing down cancer.

Lulu700 profile image
Lulu700 in reply to Bushido9

Imrt worked for me.

fluffyfur profile image
fluffyfur in reply to Bushido9

HIFU is generally not recommended for Gleason 8. Feel free to ask other guys in the group but I'm pretty sure you're wasting time and money. You're better off just doing ADT and nothing else.

Bushido9 profile image
Bushido9 in reply to Bushido9

uchicagomedicine.org/cancer...

treedown profile image
treedown in reply to Masirah

You realize this is specifically for Patients With High-risk Prostate Cancer Receiving Combined External Beam Radiation Therapy and Brachytherapy right?

Masirah profile image
Masirah in reply to treedown

Yes, I realise that, however there are numerous researc papers I have read, that say it's injurious to your health. Indeed, only yesterday, my oncologist told me I could have radiotherapy without the hormone tablets. She was hesitant to say hormone tablets would make a difference.

treedown profile image
treedown in reply to Masirah

Good luck with your treatments. Too late for me I had it all.

Masirah profile image
Masirah in reply to treedown

Don't give up, you can defeat this disease if you try. Google to story of Guy Tenenbaum and how he defeated cancer. It's difficult but not impossible.

treedown profile image
treedown in reply to Masirah

Thanks but not giving up. Just too late to change treatments already received and I am almost at 2 years on ADT and had radiation.

ADT has so many side effects to your quality of life key word there is" Life" it is the standard of care for almost all of us so join the club. I was already a raging maniac so can't blame the meds. It will definitely be a life changing experience.

Bushido9 profile image
Bushido9 in reply to leo2634

I can be a raging maniac. I do not suffer fools gladly. I have no patience to be politically correct when dealing with blatant stupidity, lack of common sense, the list continues. In the 50's and 60's, this used to be the sign of a good teacher, or parent. Now, we all have to get along in the sand box. Pathetic.

leo2634 profile image
leo2634 in reply to Bushido9

I wish you the best on ADT. We are always here to help, talk and share our experiences. This is a great Brotherhood of survivors. Never give up Never surrender.

Bushido9 profile image
Bushido9 in reply to leo2634

Thanks Leo.

Lulu700 profile image
Lulu700 in reply to leo2634

Me too!😂😂

I would try to avoid ADT if I was you. At 70 , do a blood test to see what your T level is. I causes Bone mineral density and muscle mass loss, as well as complete loss of sex drive. If your T is already low, what do you really gain with ADT?

Sorry if it sounds contrarian, just my thoughts.

Bushido9 profile image
Bushido9 in reply to CSHobie

Great suggestion. My only T test in my life was in 2017 when I was 67. It was 688 on a scale of 250 to 840. That's above average to high T.

She should worry more about your probable complete disinterest in and inability to have sex!

Bushido9 profile image
Bushido9 in reply to Break60

She is, so am I. She's 46 and very attractive, petite. I'm 70.

Lulu700 profile image
Lulu700 in reply to Bushido9

The numbers are great! 😊

Lulu700 profile image
Lulu700 in reply to Break60

Not if it’s true love ?

Bushido9 profile image
Bushido9 in reply to Lulu700

It is a loving relationship. We're buddies, work partners, know each others foibles, and accept.

Lulu700 profile image
Lulu700 in reply to Bushido9

That’s the best.

If you’re high strung already she could be correct. I raged three years on my newlywed bride. The partners get the brunt of it . You are the same as I . 4+4 =8 gl. No metes no bones involvement. You need adt with Rt to put it down . No man wants this. It is choosing life over ego . Sorry you’re here. You will find out everything and more than you need to know . I had a reverse hormonal rage . I didn’t give up the ship of my manhood easily. I hope that you don’t fight yourself like I did. I don’t see you avoiding adt if you want to survive this for long. I was more complicated than you are . Imrt and adt have kept me six years under the radar ... Good luck ..

Bushido9 profile image
Bushido9 in reply to Lulu700

How long were you on adt? My oncologist would like me to be on adt for 18 to 36 months.

CSHobie profile image
CSHobie in reply to Bushido9

Thinking of 18-36 months as a short time is not right. This is the best years of the life you have left. The effects of ADT is like a 100lb anvil dropping in on you. 6 months is long enough. The effects come on fast, and it will take years to fade away. Meaning it will take years for T to approach what it used to be.

Others have mentioned, Estrogen based treatment, think of that, do everything to avoid ADT

Lulu700 profile image
Lulu700 in reply to Bushido9

I’ve been on it over six years now. Some men for over a decade or more.???

I don't know about all the other men but in addition to sex with another person was sex with myself. Masturbation has been my go-to since I was twelve. Even after my prostate was removed and the ejaculation function no more I was still able to rub one out. Dry orgasm is what it's called. But a year of ADT made even that impossible. My last 3 month ADT injection was last September and still nothing. My PSA is now undetectable but so is any hint of life down there as the testosterone has remained <6. It was 427 prior to surgery. I also had 37 sessions of pelvic radiation. And don't get me started on the shrinkage...

🧐

Greetings Bushido9,

BTW did you say you were hit by a truck? Also please tell us about yourself (don't be shy)....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/17/2021 9:45 PM DST

Yes. I was hit and run over by a truck. And that is why I have prostate cancer.Pelvic trauma, lead to prostatitis which went untreated, lead to prostate cancer.

2005-2008 study in San Francisco confirms.

But that is not the story. It's an open book hiding in plain sight.

fressadi.com/blog/cars/1979...

Bushido9 profile image
Bushido9 in reply to Bushido9

For the rest, you'll have to read the book, Confessions of a Common Man.

Started Lupron in March 2020; some hot flushes, but manageable. My personality has not changed since then - although I am moved to tears when I read some of the messages in this forum. Perhaps it would have happened before my treatment, but I'll never know now.

I still don's cry watching chicks' flicks. In fact, I am still not inclined to watch them. I truly believe that exercise helps a lot while on Lupron. I have kept my weight at 167 - 170 lbs, still lifting at at the same rate or better than before ADT, no loss of muscle, but no gain either. Erections still happen; no Cialis yet - but I'll take a daily minimal the moment things get worse.

I got ten months to go, I so I don't want to jinx myself at this point.

Best of luck.

Interesting. Thanks.

One has to do their own QOL vs. OS analysis. With a little “maybe I’ll make it to the cure” thrown in.

Bushido9 profile image
Bushido9 in reply to Anomalous

news-medical.net/news/20200...

Bushido9 profile image
Bushido9 in reply to Bushido9

i-sis.org.uk/Cancer_a_Redox...

Bushido9 profile image
Bushido9 in reply to Anomalous

Study finds sodium cloride nanoparticles (aka SCNPs) are toxic to cancer cells:

news-medical.net/news/20200...

“ send in the clowns” Singing in the rain brother.

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