Am I Crazy???: Let me preface this post... - Advanced Prostate...

Advanced Prostate Cancer

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Am I Crazy???

Murph256 profile image

Let me preface this post by saying that I’m one of those guys who values quality of life over longevity, within reason. I know this stance is very controversial on this forum, and so I will tread lightly. Almost all of you guys are fighting tooth and nail for your last breath, and I respect that.

That said, I am having a difficult time coming to grips with the idea that I might have to or should go back on ADT for the rest of my life.

First, a little background...diagnosed on 1/18, RP in 8/18, salvage radiation from 3/19-6/19, ADT from 3/19-12/19, PSA returned on 1/21. And every imaginable scan or MRI has never been able to locate the source of my persistent PSA.

My PSA is currently at .9, with a 2.3 month doubling time. and I am scheduled to see my MO next week.

Now, obviously the safest move is to go back on ADT, but I had an extremely difficult time on ADT the first time around. It made me an emotional wreck and ruined my romantic relationship. Additionally, I had an heart attack on 8/20, and I know ADT can further damage one’s heart.

My MO says there is still a reasonable chance the sources of my PSA could be local (cells left behind in the prostate bed) and could be treated with radiation. Although I wonder about that theory, since my entire pelvic region was blasted with 40 doses of IMRT in early 2019.

So my question is, is it completely irresponsible to wait until the source of my PSA can be detected, and try to treat the source with targeted radiation? Or should I just capitulated and go on ADT indefinitely?

123 Replies

A PSMA PET/CT will show lesions, the short PSADT is an indicator for mets.

An alternative is to choose ADT without lowering testosterone. The low testosterone level and again caused by that the low estrogen level cause the side effects you experienced. This alternative would be Bicalutamide 150 mg monotherapy, e.g. three of your 50 mg pills daily. Or Apalutamide without Lupron. This will work well but is not according to the guidelines. You wrote you value quality of life over longevity. Bicalutamide or Apalutamide without Lupron may reduce your overall survival by a few months. Not necessarily so.

Murph256 profile image
Murph256 in reply to GP24

Thank you. I’ll bring all of that up next week with my MO, and request a PSMA PET scan.

GP24 profile image
GP24 in reply to Murph256

Here is a study comparing Bicalutamide 150 mg versus castration (e.g. Lupron) in patients without bone mets (like you). The result was, Bicalutamide worked just as well as castration. But there was a much lower loss of libido and muscle mass: "There were statistically significant benefits in the bicalutamide monotherapy group in the 2 quality of life parameters of sexual interest (p = 0.029) and physical capacity (p = 0.046)."

pubmed.ncbi.nlm.nih.gov/110...

Murph256 profile image
Murph256 in reply to GP24

Fascinating. Thank you.

ron_bucher profile image
ron_bucher in reply to GP24

That study says is was done on "nonmetastatic (M0) locally advanced disease" which doesn't seem to match Murph256's profile.

GP24 profile image
GP24 in reply to ron_bucher

Murph256 is M0. The patients in the study may have been more advanced than he is but the study results will apply.

ron_bucher profile image
ron_bucher in reply to GP24

webmd.com/prostate-cancer/m...

RonnyBaby profile image
RonnyBaby in reply to Murph256

I also went the route of using Bicalutamide as monotherapy about 4 months ago after a BCR.

I had a PSMA PET scan prior to making any decision(s).

I have 'pelvic spread' in the entire abdomen AND felt suicidal and broken from previous ADT (Lupron)

Original Dx - 4+ years ago - G9 and node positive - went for radiation and ADT 'combo'.

The BCR was detected about 8 months ago.

Today, my PSA HAS DROPPED TO 0.12 and I suspect I'll be undetectable at my next reading (3 weeks from now).

Obviously, we are not the same BUT as mentioned earlier by another - it is worth investigating.

Wishing you the best on your journey .....

JPnSD profile image
JPnSD in reply to GP24

Not sure you can get a PSMA PET/CT at a PSA of .9...and if you do...it may miss most of what you are looking for at that low a PSA Level. See the literature for the tests and a PSA of 2 is usually the minimum level I believe for the test.

Murph256 profile image
Murph256 in reply to JPnSD

Thank you.

It is tough.

I can certify that you are not crazy..you seem like a logical, deep thinker to me.You have heard in past "PSA is Not Cancer" PSA can increase dut to prostate hyperplasia, prostatitis....PSA is not specific to Cancer..it only says "Dude..there is something going on in your prostate gland" PSA is like check engine light ...

There are various paths to reach the top of the mountain...The path you choose is entirely your discretion.

I chose to stop Lupron 12 months ago and since then, I am only on Bicalutamide +Dutasteride and PSA is very slowly creeping up over last 12 months. Besides..Lot of anti cancer food items..5 mile daily power walk etc. has kept things under control.

Every man's prostate cancer is different...some men can certainly use lupron free treatments.

As for quantity of life...Have you heard Some Yogis in India decide that on a certain day at certain time, they will leave their body...They have mastered a way to stop their breathing long enough to cause their death....Its a voluntary choice they make,,It is called "samadhi"

Its your life..its your body..

GP24 profile image
GP24 in reply to LearnAll

Here is a study using Finasteride and Bicalutamide. Dutasteride probably works a bit better than Finasteride.

annalsofoncology.org/articl...

LearnAll profile image
LearnAll in reply to GP24

GP24...This is exactly the study from Harward University faculty..I came across over a year ago. This study was the one which made me decide on the regimen of Bicalutamide+ Dutasteride 12 months ago. My MO agreed after I presented a copy of this study.

Farmhand profile image
Farmhand in reply to GP24

Great to know ...thanks for the info

JPOM profile image
JPOM in reply to GP24

i tried substituting dutasteride for my finasteride, because supposedly it is more effective, interacting with all prostate cells, cancerous and healthy, while finasteride only hits the PCa cells. The dut increased urinary urgency about 3-fold. I've been on bicalutamide, finasteride and tamsulosin for over 3 years, with a steady PSA <0.1 --- but I'm 74 years old, live alone, still have my gland and don't care if I ever get laid again. Women are largely argumentative walking pains in the ass anyway.

Masturbation isn't as fun but the orgasms are just as intense, even with semi erections... maybe because I have one kick-ass imagination.

2 days ago, my hemato-onc saw indications of liver distress and cavalierly told me to stop taking the bicalutamide for 2 weeks, because most likely it was (finally) screwing with my liver. Out of the 4 other Big Pharma meds (that ALL do that), he determined it's the casodex. Of course, ALL the PCa doctors out here recommend surgery and radiation, offering incentives ranging in desirability from a nice canvas carrying bag to a night with the legal hookers. Ok, kidding but you know the drill - it's all about soaking Medicare $$ through me.

I live in the biggest little city in the world, and all the doctors know each other. I have an appt with my uro-once in two weeks. I'll show him the liver function test results and see what he thinks. I'm guessing it will be the same deal, trying to get me off the casodex to let the PCa go wild and put me back with the guinea pigs. Ya, no thanks, been there and done that when first diagnosed in 2017. I'm doing a couple of liver cleanses, see what that does. 2 gall bladder cleanses saved me from THAT surgery about 40 years ago.

You could consider doing intermittent ADT as needed to control your cancer since it sounds like your tumor burden and PSA are low. As far as I know, intermittent ADT has not proven to be inferior to continuous ADT, but has provided a better quality of life for many who have done it. Ultimately, it's your decision and you have to make the decision based on what's important to you.

One strategy would be to do intermittent ADT and then add either Apolutamide or Darolutamide when you become castrate resistant. If at that point you have detectable mets through conventional imaging, you could add Abiraterone or Enzalutamide instead.

I dont think it's realistic to expect a cure from radiating distant metastases, but in the case of oligometastatic prostate cancer, radiation may help to manage the disease and prolong progression. Here are a couple articles on the subject:

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

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

ascopubs.org/doi/full/10.12...

These are things you can discuss with your doctor.

6357axbz profile image
6357axbz in reply to gregg57

Good post Gregg. Thanks. The ASCO article is the most comprehensive report on OMPC I’ve seen.

gregg57 profile image
gregg57 in reply to 6357axbz

Thanks.

6357axbz profile image
6357axbz in reply to gregg57

Thanks for fixing the links Gregg. In reading the conclusions of the IADT vs CADT study it seems there are 7 criteria which, if met, indicate improved likelihood of IADT being beneficial, or at least non-inferior. Note that the final item (number 7) uses the conjunction “and” implying all 7 conditions must be met. That doesn’t leave many patients who could benefit from IADT.

“This implies that

1) patients who achieve PSA <4 ng/mL during the 5–7-month induction period,

2) have poor tolerability to CADT,

3) have non-metastatic disease, or metastasis limited to lymph nodes,

4) have locally advanced disease,

5) are older,

6) have Gleason scores >7,

7) and have longer PSA doubling time

may actually benefit with IADT”

Prostate cancer makes us all crazy. First, if you had radiation to the prostate already, I don't think you can have it to the prostate again.

Your PSA is still low so you have some time to think this through. Lupron can be nasty stuff. However, the side effects of zytiga or xtandi in my opinion are not as bad as Lupron. Just a thought, before you write them off.

GP24 profile image
GP24 in reply to Magnus1964

Magnus, I disagree. Zytiga lowers testosteron better than Lupron so you may take it without Lupron: ascopubs.org/doi/abs/10.120...

But this will not improve the side effects caused by low testosterone. It will just save the cost for Lupron.

Xtandi without Lupron will probably cause fewer side effects but there are no studies for that yet.

Magnus1964 profile image
Magnus1964 in reply to GP24

Follow your own research.

CharlieBC profile image
CharlieBC in reply to GP24

That is where I am- Lupron isn't keeping the PSA down, but is keeping the Testosterone down. I was reading this thread hoping to see someone's experience with Xtandi without Lupron/Eligard. I'll keep looking.

GP24 profile image
GP24 in reply to CharlieBC

From your profile I understand that you are non-metastatic castration resistant. Then you can take Nubeqa. You could take this without Lupron although this is not following the guidelines:

healthunlocked.com/advanced...

CharlieBC profile image
CharlieBC in reply to GP24

GP- thanks for the wake up call about my profile. Last scan showed mets in lymph nodes. "Ground glass" opacity in lungs.

JPOM profile image
JPOM in reply to GP24

Over the 3+ years keeping my gland, GL 4+3, mono-therapy low-dose bicalutamide (50mg)+finasteride+tamsulosin, my testosterone varies, between 200-500. The bicalut. supposedly de-activates? blocks? receptors that use testosterone. I thought these receptors were only in the prostate but was told by a uro-onc that ALL my body's T-receptors are blocked. I haven't found any studies proving that, so my jury is out on that score. I want to doubt it but can't deny the plausibility.

There is no known benefit to zapping metastases.

Murph256 profile image
Murph256 in reply to Tall_Allen

Got it. Thanks.

GP24 profile image
GP24 in reply to Murph256

I do not like to have mets and have them removed if possible. It did reduce my PSA value. Here is a study reporting success after treating the mets with radiation.

jamanetwork.com/journals/ja...

There is no proof that this will make me live longer but I just do not like to keep my mets for later.

6357axbz profile image
6357axbz in reply to GP24

Agreed. No proof for longer life but i don’t think it will make ones situation worse.

Tall_Allen profile image
Tall_Allen in reply to 6357axbz

Why don't you think that holding back on treatment waiting for the cancer to grow and spread will "make matters worse?"

6357axbz profile image
6357axbz in reply to Tall_Allen

I didn’t speak to holding back on treatment. Only to zapping mets. I was addressing GP64’s comment, “I do not like to have mets and have them removed if possible.”

Tall_Allen profile image
Tall_Allen in reply to 6357axbz

I agree.

Tall_Allen profile image
Tall_Allen in reply to GP24

There is a BIG difference between zapping the metastases you can already see and waiting for new ones to grow by holding back on treatment. You have MANY metastases whether you can see them or not.

Read this about ORIOLE, especially the last paragraph:

prostatecancer.news/2019/09...

GP24 profile image
GP24 in reply to Tall_Allen

Allen,

when doctors ask me if I use ADT, I say yes, intermittent ADT. Currently I am having a break. This means that I have to restart with ADT at a PSA value of 10 ng/ml taking the Crook study on intermittent ADT as a guide. However, so far I have always lowered my PSA value again by zapping my visible mets and never got close to 10 ng/ml. This made my ADT break last for over five years now. I stopped with Degarelix at that time.

Tall_Allen profile image
Tall_Allen in reply to GP24

Treating PSA masks what is really going on with your cancer:

prostatecancer.news/2020/07...

GP24 profile image
GP24 in reply to Tall_Allen

When I have my mets radiated, I do not mask the PSA value. I debulk the tumor. The radiation will kill tumor cells, even resistant ones, and achieve local control of the mets, i.e. the treated mets will not start to grow again later.

Tall_Allen profile image
Tall_Allen in reply to GP24

I did NOT say you were masking PSA, I said you were masking what is really going on with your cancer by treating PSA instead of treating your cancer. It led you to make the decision to stop ADT, giving your cancer a break. PSA is NOT cancer.

Murph256 profile image
Murph256 in reply to Tall_Allen

Thank you.

TFBUNDY profile image
TFBUNDY in reply to Tall_Allen

Your pelvic radiation must have zapped something. Not mets?

Murph256 profile image
Murph256 in reply to TFBUNDY

I’m afraid the cancer cells had already escaped the localized region of my pelvis and become systemic, by the time I had IMRT.

What is the difference between this claim and "identification and radiation of oligometastases is a scam?"

Who said it is a scam? I always advise patients to zap what they can see, if it is safe to do so.

In general, to say that a certain treatment has no known benefit and to say that it's a scam are identical statements.

They are far from identical. What I said was there is no known benefit to zapping metastases. There is a known benefit to adding treatment now in his case.

To me, its the same old nasty conundrum. I’m the poster child for adt side effects and met bone damage. My life is a living hell of side effects and damaged bones / joints. Every day I think of losing this adt hell and returning my life to some semblance of comfort and normality . Going off adt would certainly go a long ways to that end. Being rid of the daily grinding adt zombie would be miraculous. But …. as people here like to remind me …. While yes the adt monster would be gone, my psa 1400-1600 monster would roar back to life and pretty soon met invasion of my organs , lungs and my brain would ensue and replace the livable adt monster with a “ much “ larger and considerably more painful and undesirable destruction that would be far more painful and ugly than the adt zombie. I’d have that little “ sweet spot “ ….after adt and before the cancer woke back up, I guess ….. ultimately I choose adt after seeing the living hell other guys here go through with their cancer in free fall.

It’s a tough choice either way … with no obvious “ best “ choice in my head. Maybe you’ll see it differently …. Many will - do . Ultimately maybe your best QOL is the adt after all …..it’s so hard of a choice isn’t it !!!

Just say’in 💪💪💪❤️❤️❤️

Murph256 profile image
Murph256 in reply to Kaliber

Thank you for the very graphic example, as well as your experiences and opinions.

Kaliber profile image
Kaliber in reply to Murph256

❤️❤️❤️

nonm profile image
nonm in reply to Kaliber

a sentence in jail! if there is a physical prison that all ADT guys can dine in the same hall and play ball ( or whatever)in the same court, that will make it a lot better for the POA...Prisoner of ADT

monte1111 profile image
monte1111 in reply to nonm

We would like to play ball, but no one has a bat.

Kaliber profile image
Kaliber in reply to nonm

That’s for sure … misery loves company . Lots of great guys and great help here.

🌻🦋🌸🌼❤️❤️❤️

JPOM profile image
JPOM in reply to Kaliber

IADT looks soooo very delicious but all that glitters ain't gold. I've stayed on bicalutamide ADT to "treat my PSA<0.1" beyond what ALL my uro-oncs, other oncs and self-proclaimed experts who publish blogs, then use links to it to prove their opinions, have told me was even possible.

I've read "anecdotes" here and in a few other PCa websites detailing upwards of 5 to over 15 years of "NED," a fancy was of saying the friggin PCa is down for the count. Admittedly, anecdotal evidence is close to scam but frankly I could NOT care less.

There was one brave oncologist, God rest his brave soul, who proved that hormone therapy that puts your PCa in remission (until something else kills you) is, for all intents and purposes, as effective as killing it with chemicals, radiation and/or surgery... the only REAL way to "treat" cancer. Really? REALLY?? Many more "anecdotes" about the side effects of poison, cut and burn are out there... and they're all a whole lot worse than what I suffer from bicalutamide. I'm not incontinent, don't have pain, don't bleed from the rectum or penis, can still make sense of the world and my place in it and am just as crazy as the rest of us... as was pointed out by magnus1964. Do your own research, take it to your doctors, if they squirm you know you hit a nerve. And trust your instincts because you know your body better than anyone else.

Kaliber profile image
Kaliber in reply to JPOM

Yayahahahaya yayahahahaya …..if one doesn’t get you , something else will….. seems like. I’m always playing medical whack-a-mole. Still I’m 36 months out …cheating my first DX of inpatient hospice…. It comes with severe difficulty for me but I’m happy to still be here. I have to do all this crap …my wife “ the hammer “ won’t let me do anything else. Says she’ll kick my butt if I croak …. I know her…she means it yayahahahaya yayahahahaya.

💪💪💪🌸🌼🌻😂😂😂

JPOM profile image
JPOM in reply to Kaliber

"If you die, I'll kill ya!" my sister used to say. Then she went and died on me!! Stomache cancer. She avoided doctors like the plague (poor choice of words, I guess) so we didn't even know she had it until it was too damn late. But I'm with you on being vertical, brother. I wake up every day just glad to be alive. I start laughing about it right after I pee.

I also play whack-a-mole, with about 8 other "co-morbidities." Recently given 2 years maximum before bone marrow cancer kills me. My response? Oh yeah? We'll just see about that!

Stay in the fray, Fellow Warrior!

Kaliber profile image
Kaliber in reply to JPOM

Well said brother … at least we can bounce our experience off each other and literally every other brother on this group. Minor individual differences exist but basically we are all the same too. Who “ gets it “ better than another brother in the same boat ?

I like the ole saying “ it’s not over until it’s over “ yayahahahaya yayahahahaya. Both of us are still here right now. That’s a good thing. Hope you can drag out that bone cancer for years buddy.

💪💪💪❤️❤️❤️

JPOM profile image
JPOM in reply to Kaliber

Thnx, Kal... just gotta find another chemo that works at least as well as the one I've been using that is now failing... a common theme among almost ALL Ca-warriors. MDS with -5q is kinda rare, so outside of China, not too much interest in it. But we fight with the army we got, right?

Kaliber profile image
Kaliber in reply to JPOM

Ryte on bruddah …. Ryte on yayahahahaya

❤️❤️❤️

There's a difference between living and surviving. Sometimes, I'm not sure which it is that I'm doing.

Kaliber profile image
Kaliber in reply to gregg57

I hear that …. If I “ knew “ I could check out at home , easy, comfortable and in a nice controlled environment… that might change things. So many of us go out suffering and ugly …. Guess I’m just trying to put off finding out which it’s going to be for me ….. as long as possible. Yayahahahaya. Plus “ the hammer “ would kick my butt if I croaked …. Don’t want that. 😂😂😂😂

I was also hesitant to begin ADT since my first experience before radiation was really awful. My MO suggested that many find a second round not as bad as the first for whatever reason?. Foe me this was true. ADT was still bad but not as bad as I remembered. I addressed each hot flash and asked everyone I could think of for advise. The most helpful advise I got was from this forum. I quit alcohol and coffee and improved my diet. The most important thing I did was to increase my daily exercise and try to never miss a day. Hot flashes can be minimized by various methods. For me the best answer was 500 mg of magnesium glycinate before bed. Hot flashes are most annoying at night and this helps a lot. I still have a lot of trouble getting good sleep. And yes, by all means, you are crazy. This disease and its treatment makes us all crazy. At the recommendation of several on this forum I started Lexipro, something I have sworn I would never do. It has helped me to relax a bit and helped me to accept my fate and concentrate on doing everything I could do to reduce side effects.

So join the other crazies and feel free to ask for advise at any time. There are some very knowledgeable people in this group.

Murph256 profile image
Murph256 in reply to spencoid2

Great response. Very helpful. Thank you.

It's your body, your life, and your decision. Nobody has the right to second guess your decision, although many will anyway. I also do not think that life on ADT is worth the trouble.

Murph256 profile image
Murph256 in reply to franko1946

The prospect of life on ADT is daunting to me. I am always fascinated by and admire those men on this forum who take ADT in stride and go on enjoying and embracing their lives.

gregg57 profile image
gregg57 in reply to Murph256

I've been on ADT for 4 1/2 years now and it hasn't been easy. Sometimes it's really hard work to keep a good attitude and work through the problems associated with long-term ADT.

But so far, accepting the challenges that life has thrown at me has been well worth it. I try not to look at what I can't do anymore, but what I still can do and make the most out of that. I have a new appreciation for life now.

"Don't it always seem to go, that you don't know what you got 'till it's gone." Joni Mitchell

I'm not a medical person but I think you need to slow down the cancer growth now with ADT. The earlier, the better.

I'd be curious to know which side effects worry you the most? Is it the erectile disfunction and loss of libido? I think you will find that there is a lot more to a loving relationship than just penetrative intercourse and a good partner will work with you on that. Is it the loss of muscle? There are adaptations you can make to make things easier. I ride an electric bike now instead of my old mountain bike. Your life is never going to be the same as it was before cancer but it can still be a great life.

Sorry for being blunt. I've been on ADT for three years now. Without it, I would almost certainly be dead by now. I am grateful for each new day and I'm living life the best that I can. I can't imagine cutting these days short. Perhaps once I am experiencing extreme pain and am unable to do much for myself anymore, I may revisit the quantity vs quality decision but not now. I'm doing what I can to keep these days going as long as possible.

Murph256 profile image
Murph256 in reply to MarkBC

The problem is that I’m widowed. If my wife of 22 years were still alive, it wouldn’t be an issue at all. We would enjoy our children, travel, mutual activities, etc.

However, emotional intimacy and a fulfilling sex life are still a huge part of my current relationship, and in fact seem to be a huge part of every relationship I’ve been in since my wife died.

And without exception, every woman I’ve ever confided in about my PC runs out of my life almost immediately, and who can blame them? I wouldn’t wish this on anyone. Finally, I just stopped telling them, as dishonest a that may be.

So the prospect of spending the rest of my life alone is increasing my anxiety about restarting ADT.

Farmhand profile image
Farmhand in reply to Murph256

If she runs out of your life after learning u have PC, she is not the right woman....she will respond similarly in other difficult situations....there aren't that many really good women out there

Murph256 profile image
Murph256 in reply to Farmhand

I’m not blaming them. The problem is my cancer, not their reaction to it.

MarkBC profile image
MarkBC in reply to Murph256

Your relationship situation is more difficult than mine but I still think you need to make control of your cancer the top priority. I think you need to be honest with the women you are seeing. They will find out about your cancer at some point and, if you have found the right woman who cares for you regardless, she will be hurt that you were not honest. And I suspect she will also be upset that you potentially sacrificed additional time on earth for the sake of intercourse with her. There are good women out there who care more about things other than intercourse. If a woman you are dating runs away because you are honest, then she is not the right woman for you. Remember too that ADT doesn't mean there is no sex life. It just means that you have to be a little more creative.

Murph256 profile image
Murph256 in reply to MarkBC

I am not with my current partner for the sake of intercourse. I’m with her because I love her.

Marshb52 profile image
Marshb52 in reply to Murph256

I’m in the same situation as you are and fully understand. Please drop me a note at marshsmi@msn.com It would be great to chat with someone else in the same situation my condolences on your wife’s passing. we know how difficult this is.

I totally understand what you're going through when I first found out I had prostate cancer they put me on lupron and I will not go back on lupron i was a mess so they switched me over and put me on firmagon and that seems to work pretty good it's not quite as hard on the body so you might want to try that and it's supposed to be a lot easier on the cardiovascular system

Murph256 profile image
Murph256 in reply to Startanew

Thank you for the suggestion.

Hi Murph, So I made a call at BCR that quality over duration would be my guide to treatment. Was G9 at diagnosis in June 15, RP in Sept 15 with good margins but BCR in Oct 16. Since then my PSADT is around 10 weeks.

In Australia we have had GA68 scans readily available. My experience is that SBRT at 1.5 can destroy all my metases and yet eight weeks latter I have another set and am back at 1.5. Done that twice so far.So on my experience your psa may be driven by circulating tumor cells. Can you get a GA68 scan?

I am close to the end of my second 6 month ADT round in 3.5 years. If the psa is as expected and with my psadt then I'll get maybe 15+ months before hitting 1.5 again, then a GA68 scan, SBRT if possible, followed by an ADT restart.

My heartbeat has gone persistantly irregular in the last 10 weeks and possibly its a sideffect of Zoladex. Using a Wellue ekg to monitor it, but can still mountain bike at 90%+ of max HR for intervals. Still I think a cardiologist is in my near future.

😀 Peter

Your grandmother must have been an unusual lady....

Some of our friends here use estrogen patches with apparently good results. Easy to try to see if it works for you. Seems to be cheap too. Look for Ronron...

Murph256 profile image
Murph256 in reply to TFBUNDY

I will discuss that with my MO.

TFBUNDY profile image
TFBUNDY in reply to Murph256

There is a clinical trial/ study called PATCH

Dr. Sartor at Tulane is willing to optimize quality of life. Many docs are not.

Go get an opinion from him on treatment with bipolar androgen therapy and treatment with ultra high levels of testosterone.

Makes sense to me. My PC metastasized to lymph nodes (2) which were radiated My and my doctor’s objective is to eliminate this cancer. To actually cure it. This is never mentioned here. My PSA is<0.01 was as high as 3.8. I am on Lipton and Xanti couldn’t tolerate 4 pills 2 wiped me out and I’m taking 2 now with plenty of side effects I don’t know if it is functional or just wiped me out and eliminates testerone which ruins love life and makes me a capon. Has anyone here actually beat this disease???

Ashikpong profile image
Ashikpong in reply to Marshb52

My question too! Everyone here talks about the disease being incurable, isn't there any iota of hope of curing this disease, atleast some individuals since the disease is supposed to be peculiar to every carrier?

33Ford profile image
33Ford in reply to Ashikpong

Have to realize your on the advanced prostate cancer site. In my case G9/10 and has spread to lymph nodes outside the pelvic area. A cure at this level would be very unusual. It might be possible, but so is being struck by lighting. 🙂

MarkBC profile image
MarkBC in reply to Ashikpong

If your disease is metastatic, then there is no cure and it is going to be many years before a cure is found. There have been tremendous advancements made in extending our lives but there is no cure. I think the best we can hope for right now is long term management similar to HIV.

you've had evry possible type of PET scan? What was the level of your PSA when you had those scans?

Murph256 profile image
Murph256 in reply to maley2711

.63 in Feb of 2019 and .43 in April of 2021. I’m now at .9.

Whose life is it?

54 months on xtandi/Lupron. I now have a 3 yr old granddaughter and now a 2 month grandson that live up the street from me. My onc told me if I went off ADT I would be dead in 12 months. I wouldn’t even have seen these kids. It’s a fairly easy decision for me. I’ve had to reinvent myself but I guess I’m very adaptable.

I admire you and many other men on here who have the ability to live a rich, full, happy life on ADT. If I choose that route, hopefully I’ll have your strength and optimism also.

Thank you. Its a battle but a battle Im winning at present. It may not be as rosy as I make it sound, there are struggles. They gutted me like a dear and robbed me of my prostate, nerve bundles, and seminal vesicles, and like a hundred lymphs. I managed to salvage our sex life by getting a state of the art penile implant that works great. And there are other challenges as well, but none as hard as thinking what my wife and kids, grand kids will go thru when that fateful day comes. For that I fight on! Plus I still get to be a pain in the butt to my wife

😀

Peace

The best way to defeat an enemy is to keep him on defense. Never let him up or you may regret giving him/it another shot at you.

I will second the bicalutamide plus dutasteride approach as alternative to ADT for those who cannot tolerate it (like me). I was recommended by a top consulting MO just 50 mg bicalutamide and 1.0 mg durasteride daily. It controlled my PC and PSA for nearly 5 years with very good QOL before it failed and PSA began to rise again. Quite a gift of life. .

Murph256 profile image
Murph256 in reply to MateoBeach

I am leaning toward that treatment. If I could get 5 good years before going on ADT, I would be ecstatic.

I ran two 0.1 maintenance Estrodiol patches for my ADT for about 6 years. Had improved bone health, lower testosterone, patches caused a bit of improved little libido, improved joints, improved memory, strong heart. I ran a baby aspirin because a lot of patches can thicken blood and increase risk of stroke. I can only tell you what I did when my PSA was low but creeping up.

With that I did leukine 2 weeks on 2 weeks off, and the combo stopped the rapid rise in my PSA without adding any side effects, and in fact improving quality of life. Those were my dancing days. Best days of my life. It was a Dr Charles E Myers (retired) protocol. Also I did a Claritin as needed for possible inflammation (bone pain) caused by the leukine (white cell booster).

I had a RRP 16 years ago and was doing great until about four years ago at which time my PSA started increasing. When it reached a little over 1.0, I decided to have the (68Ga-PSMA-11-PET/CT) scan which identified metastasis in several sacral lymph nodes which I subsequently decided to have excised via robotic surgery per my urologist. Had I known that this surgery was just a 'stopgap' procedure (as Tall_Allen later predicted), I would have forgone this expensive operation which simply bought me a little more time.

Since my post-op PSA level continued to slowly rise, I was determined to find an alternative to the 'unfriendly' conventional ADT drugs and began reading every article on the old oral DES therapy that was used effectively for over 40 years to treat PCa. However, due to the increased CV risks it was replaced with Lupron injections about 35 years ago.

My grandfather, dad and uncles all were on DES, did relatively well considering the extent of their PCa, and seldom complained about side effects common to most modern ADT drugs. Estrogen therapy for PCa has recently been restudied and is now available in transdermal forms, i.e,, the patch and creams/gels. Estradiol (E2) is the most potent of the three major estrogens and is a significant hormone in BOTH men and women that is responsible for bone health. Transdermal application of estradiol (tE2) maintains bone density while significantly lowering the cardiovascular/thrombotic risks associated with oral estrogens since the hormones directly enter the bloodstream and bypass hepatic metabolism.

I started using the gel three and a half years ago and my PSA has dropped down to 0.003, and the only side effect I am experiencing is gynecomastia (man boobs) which isn't a big deal for a 78 year old buzzard!

You mean your maternal grandfather…

carlo8686 profile image
carlo8686 in reply to Savoy

Damn toilet seat

A tough decision indeed.

Whenever I see discussions of QoL vs. longevity, I wonder what the author will think once he's staring into the abyss. Also, obviously, there are many other factors involved, e.g., sense of duty to loved ones, how much real enjoyment life provides, etc.

Re: IADT, keep in mind that with Lupron, the vacations are likely to be short or nonexistent. If you're going the LHRH route, choose relugolix, which offers T recovery in a few weeks.

If you really hate ADT's SEs, look into high-dose transdermal estradiol.

Best of luck to you.

Murph256 profile image
Murph256 in reply to Horse12888

Thank you.

The answer to your post title is YES.We're all crazy due to PCa.

For me. I have too many other things that define me to be concerned about sex..

I still orgasm but the little guy doesn't stand at full attention like before my RP, IMRT and ADT. Still get the morning salute but not as stiff.

Murph256 profile image
Murph256 in reply to TomTom1111

It’s not the sex per se that’s important to me. It’s the intimacy and emotional connection of being in a relationship that is the issue. Unfortunately, I can’t seem to find the latter, without the former. At least that was true the last time I was on ADT.

I couldn't handle the Lupton side effects either, went from bicalutimide to xtandi which is beginning to 'not work'. I have refused chemo so far, but the more you progress the more you are willing to change your mind. In answer to your question...if you are on this site you probably are crazy ; )

Tough decision. I'm in favor of quality of life over quantity. I am currently ADT + oral chemo. It is affecting my life but not to the point of major disruption. I think if I were faced with more intense chemo or radiation, I would refuse it. But, it is hard to know until I am actually faced with the decision. Best of luck to you!

Yes... you are a little crazy. PCa is about as "Catch 22" -ish an experience as a man can have. My PSA has returned after RP and salvage radiation as well and is doubling every four months. My MO says wait until PSA is over .5 for scans, find the cells and then target cells with radiation and ADT. Several knowledgeable posters here suggest bicalutamide monotherapy may be a better course and every day without treatment is a potential victory for cancer cells to grow and spread. For the time being, I hope you continue to keep the group informed of your journey. It is truly helpful to share here.

ron_bucher profile image
ron_bucher in reply to Jvaughan0

I was in a similar spot 5 years ago, but instead of waiting I got Taxotere plus additional raditation of lymph nodes above the local area. My PSA has not gone above 0.02 since.

Jvaughan0 profile image
Jvaughan0 in reply to ron_bucher

Glad the treatment seems durable. How often do you receive taxotere IVs?

ron_bucher profile image
ron_bucher in reply to Jvaughan0

6 Taxotere infusions spaced three weeks apart. I was in great physical shape going into it, and breezed through it physically. I did have a little temporary brain fog but continued working full time without much problem. Energy fell off a cliff 3 days after each infusion, but rebounded to 99% within 5-6 days each time.

hi Murph256 ... considet taking a look at these ... drgeo.com ... and ... envita.com ... best wishes ... Nous :)

Murph256 profile image
Murph256 in reply to Nous

Thank you.

I am in the same boat as you. Not going back on ADT.

Probably screwed it up. Get a mri or Psma or both.

You've gotten many great suggestions here. Honestly, no idea what I'd do. I do know that ADT was the worse time of my life; you name the side effect, I had it. In spades. I am so envious of those here who weather that storm without major incident. My point is simply: I feel your struggle, frustration, QOL internal debate...good luck with whatever you decide.

EdinBaltimore

Murph256 profile image
Murph256 in reply to EdinBmore

Thank you for the empathy.

Get the Scan when it’s time.

I tried most all the above. This is the only thing that completely took away my hot flashes. I had horrible hot flashes. Sleep deprivation and sweating. My wife got tired of me waking her up at night. This patch once a week has done wonders. Have been taking since March 2020. Took about a week before I noticed a decline and within three weeks they were gone. Thank the Lord. I finish up my ADT this coming December. Looking forward to it.Do 03/16/2020

PSA 54

Gleason 9 13 of 16 cores positive

Began tx 06/05/2020

18 mths ADT - Three 6 mth Lupron shots

One 50 mg Bicalutamide/day

EBRT 45 treatments

As of June 8th PSA.01 and testosterone 2.4.

M

I also had PSA recurrence after RP (Gleason 4+3) and salvage radiation of the local area. Mark Scholz in Marina Del Rey recommended Taxotere plus radiation of the lymph nodes that go from the local area upward toward the heart. I did that 5 years ago and my PSA has been stable between undetectable and 0.02. I hated Lupron but tolerated Taxotere very well. The radiation side effects were about the same as the radiation of the local area, maybe even less.

I will discuss taxotere with my MO. Thank you.

Retiredteacher67, maybe it would be a good idea to do a genetic test. Certain mutations could give you treatment options.

No My reoccurrence was in my right shoulder discovered by Mayo choline pet scan.

After much research and MO consultations (UCSF, OHSU, local) standard of care is ADT for life. For me at Stage 4, it's been a constant tradeoff between quality of life and beating back PSA levels with drugs. The impact of ADT on your heart issues need further analysis from your cardiologist. Good luck!

Murph256 profile image
Murph256 in reply to GDeG

Yes. Thank you. I will speak to my cardiologist.

Not crazy at all. QoL means much more to me than lifespan.

I hated the idea of conventional ADT. Bone loss, depression, mental issues, cardiac problems. So I did estrogen patches. 0.3 mg/day got my T to undetectable and held it there.

At the very least, if conventional ADT is done, a low-dose estrogen patch should be used if cardiac and bone issues are a concern. This is standard procedure for some doctors. Unfortunately, most of them are way behind the curve.

I couldn't stand the loss of muscle and libido with estrogen ADT (no way to get around that when T is zero). I decided that a few months as a man would be better than a lifetime as a girl. So I did some research for alternatives. There is a school of thought and some research backing high testosterone (hormonal interference). It won't work for many of us. But I took a shot (pun intended - weekly shots of 400 mg of testosterone cypionate). When I did my first injection, part of me expected to be dead within the month.

But it worked out and it's been close to 2 years of weekly cypionate injections. Libido is back. Muscle is back. I've put on 35 lbs of muscle (Big Ramy is in no danger - Lol! Half of it is simply recovery from the ADT). My MO is ecstatic that I am doing so well and she tells me to "keep doing what you're doing because it's working".

That’s great. Congratulations!

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