ADT Vacation?: To ADT vacation or ADT... - Advanced Prostate...

Advanced Prostate Cancer

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ADT Vacation?

DarkEnergy profile image

To ADT vacation or ADT continuous for life?

Obviously, androgens fuels prostate cancer, so why would we consider taking vacation from ADT?

I'll start with my take, initial PSA 1000+, my pelvic scan looked like scrambled eggs, then after 3 months of ADT, the pelvic scan looked normal, albeit with scared tissue.

I've been on ADT vacation since last November.2020:

Date PSA

11/06/20 <0.02, - Last ADT

02/18/21 <0.02,

05/19/21 0.09,

06/25/21 0.18,

07/22/21 0.27,

08/19/21 0.55

So, next week have a scheduled scan, is this prostate tissue recovery or cancer?

98 Replies

Cancer, obviously, since it is rising with testosterone.

I have a question regarding your response. It's my understanding the ADT drugs, like Lupron, stop the body from producing testosterone which, hopefully, causes the cancer to retreat and stops it from spreading. And it causes the remaining healthy part of the prostate to stop functioning and producing PSA as well. So along with the cancer cells no longer producing PSA part of the PSA drop is due to the healthy prostate not producing PSA. When one goes on an ADT vacation the healthy portion of the prostate starts cranking out PSA again which causes the PSA level to go up even if the cancer does not become active and produce PSA. So until the PSA level rises to some determined point (2 above nadir is what my MO has said) it cannot be determined if the rise is due to the cancer being active again or just a function of the prostate functioning again. Is that correct?

I’ve hard the same 2 above nadir .. 👍

It’s not the only reason that psa can increase when off ADT. If one has had his prostate removed or had it successfully radiated ( ie no more cancer can be found on either the remaining prostate or prostate bed) an increase in psa after stopping ADT means you have cancer elsewhere . That’s my situation. Each time I went off ADT, my psa increased quickly due first to cancer in my prostate bed, next to my pelvic lymph nodes, next to my right femur, then to my scapula and one rib. High risk Pca ( Gleason 8-10) usually recurs and is systemic. After each psa increase, I had scans to locate the recurrence and had the area radiated then went back on ADT until 2018 when I decided to stop vacations and use estradiol patches instead of Lupron or it’s ilk.

Nickster111 profile image
Nickster111 in reply to Break60

How are you now?

Break60 profile image
Break60 in reply to Nickster111

I’m doing ok . My latest psa was .5 and T was 3.0! So I don’t have the strength or stamina I’d like to have but I’ll be 78 in January. I work out at least 4 times a week to keep from losing flexibility and strength and play golf( poorly) once a week. I was diagnosed in 2013 with Gleason 9 Pca at age 69 which was like a death sentence. I was told I had at least ten years and by the time that occurred new treatments would probably be discovered which would extend my life further. I’m still here living the good life. My metastasis has been only in bones since 2015 and only one or two at a time ( oligometastatic) which I had treated with SBRT , so I consider myself fortunate all things considered. I have no restrictions except I’ve lost accuracy and distance in my golf? game. I love my two boys (men) , their wives and 4 grandchildren . I’ve been married for 52 years but sex is long ago in the past. Life is comparatively good! Thanks for asking . Bob

Aynoy profile image
Aynoy in reply to Break60

Do you take zytiga ? Just curious. My husband has been taking it for 4 years and so very tired and feeling horrible Wondering other options. Tia

Healthy prostate cells do not dump PSA into the serum. That's why 18 yo men usually have zero PSA.

JPOM profile image
JPOM in reply to Tall_Allen

cancer.gov/types/prostate/p...

What is the PSA test?

Prostate-specific antigen, or PSA, is a protein produced by normal, as well as malignant, cells of the prostate gland. The PSA test measures the level of PSA in a man’s blood. For this test, a blood sample is sent to a laboratory for analysis. The results are usually reported as nanograms of PSA per milliliter (ng/mL) of blood.

Tall_Allen profile image
Tall_Allen in reply to JPOM

PSA is produced by healthy prostate cells, but it does not get into the serum unless the cells are defective or physically perturbed in some way.

JPOM profile image
JPOM in reply to Tall_Allen

the PSA test readings we monitor are Total PSA... that would include serum and free.

Tall_Allen profile image
Tall_Allen in reply to JPOM

No. Both total and free are in the serum. That’ll why they take blood to measure them.

It occurs to me that you probably don't understand what "serum" means. Serum is whole blood less the clotted blood. It's what's in those little test tubes they collect from your vein.

Hello, With a very high initial PSA, and metastatic cancer that has escaped the prostate I am always surprised at people who want to take a vacation from Androgen Deprivation Therapy (ADT). I have mentioned this many, many times on this forum and I am fixing to mention it again. ADT for people like you (and me) is like getting on a medical train. Once you get on the train you are on it for life. You can add various drugs to the train (in my case Casodex or bi-calutamide and Xtandi or enzalutamide). You can also take things off the train (in my case Casodex) but you never get off the train. The treason for this is simple, people with PCa need to understand that prostate cancer is heterogenous not homogenous. When the horses are out of the prostate barn they are diverse. You have black horses, white horses, palominos, mares, stallions and everything in between. They are all running free. To stop taking ADT is like starting your battle again. You might think the ADT is ineffective or no longer needed when it is actually very effective but possibly only against certain prostate cancers (or, in my analogy, horses). My PSA at diagnosis was slightly below 1700. That was eight years and three months ago. It is currently at 0.05. I have been on ADT from the beginning and Xtandi for the past four years. Side effects? You bet but, given the alternative, nothing I can't handle. Hope that helps!

Very well said....ty

Lulu700 profile image
Lulu700 in reply to RyderLake2

I Too ,was told shots for life !

Savoy profile image
Savoy in reply to Lulu700

Yeah me too

Poowater profile image
Poowater in reply to RyderLake2

Great reply. Like the analogies.

Haniff profile image
Haniff in reply to RyderLake2

Well said and I endorse it Bro 😎

Thanks for reminding everyone on HU, appreciate it

Haniff

Brightman profile image
Brightman in reply to RyderLake2

I too have been on ADT since I was diagnosed with metastatic PCa in 2016. After radiation and chemotherapy I reached a nadir of <0.01 , which continued for over 4 years. According to scans my 4 Mets had disappeared. But in November 2021 my psa rose to 0.11. Early in 2021 with a new tumour on my T11 vertebrae my psa rose to 0.16. In March I completed 3 sessions of SBRT and my latest blood test shows my psa is back to <0.01. I was told from the outset that I would be on ADT for the rest of my life. I can’t believe that others in a similar situation go on a so called ADT holiday. I am fully convinced that my decision was the best one.

doc1947g profile image
doc1947g in reply to Brightman

You mean :November 2020.

Brightman profile image
Brightman in reply to doc1947g

Yep getting ahead of myself!

Lulu700 profile image
Lulu700 in reply to Brightman

2015 for me .

Hailwood profile image
Hailwood in reply to RyderLake2

So well said, and I love the horse metaphor, but I use motorcycles instead, although if my métastases were like my Moto Guzzis, they would stop doing anything for a long time for no reason, but I think my illnesses are more like my Kawasakis and just keep going. Seriously though, thanks for your well thought out post and reply and personally I’m sticking with the Erleada and Lupron until I need something else and so far so good with minimal side effects

Lulu700 profile image
Lulu700 in reply to RyderLake2

It s a very bold move … for meT won’t return without injections . Some have had luck supposedly with BAT.. high dose t ,sign me up ! . But it possibly could enrage the pc and kill me?. 😳

Bunkerboy profile image
Bunkerboy in reply to RyderLake2

Great explanation. Thanks👍🏻

JPOM profile image
JPOM in reply to RyderLake2

my hemato-onc told me my liver enzymes showed that organ was being stressed and went straight to "stop taking the casodex - it's been known to damage liver and kidneys" When I asked about the other 5 pharmaceuticals i take, he said they were less toxic. I ain't stopping my ADT until at least consulting the uro-onc who Rx the casodex. Also doing a liver/kidney flush a few times. But no casodex? or vacation? nope nope and nope... not gonna happen.

Aynoy profile image
Aynoy in reply to JPOM

Hi. My hubby takes detox tea which helps w the liver counts Basically milk thistle and dandilion. Not sure if your meds would cause an undesirable result. But this really helps him

JPOM profile image
JPOM in reply to Aynoy

two of my favorite "weeds" - so how bad can the tea be? do you recommend any brand? i used to detox off coffee with Traditional Medicinals Herbal Teas.... The recipes for the cleanses I used so many years ago are somewhere in the wilds of other hard drives - i vaguely remember the piece of paper they were on - lemon, honey, cayenne and i think goldenseal root were on the list...

"Once you get on the train you are on it for life.", well this sounds like an opinion...

Hello, For sure it is my opinion. Mine and my medical oncologist. If your PSA was as high as mine at diagnosis (1700) and if your PCa was as widespread as mine with extensive bone mets from my neck to my knees, you can understand why I and others are reluctant to come off ADT. It seems to me that people in my situation are just tempting fate to take a holiday from ADT. I, and many others, are simply not prepared to do that.

Was diagnosed with PSA 1000+, after I woke up screaming in pain while urinating blood, in the Boston MA area, so lucky me, well kind of, got fast amazing medical attention.

I'm a born risk taker, it has served me well, to date, so far...

Hello, The world needs risk takers. Unfortunately, I am not one of them. Should either Zoladex (goserelin) or Xtandi (enzalutamide) or perhaps even both lose their efficacy my next step would probably be Lutetium. However, I would not come off either of the two drugs that I am on right now. I am also on a maintenance dose of Prolia (aka Xgeva) a bone strengthening drug. The medical name is denosumab. I would probably maintain that as well. If you are being treated by Dana-Farber you are in good hands.

Damn spell check not treason but reason!😀

Actually, "treason", worked as well...

My vacation decision was a group discussion with the Dana-Farber team. My oncologist has scheduled PSMA PET/CT scan to hopefully discover where the cancer is.

It's a strategy to discover and target the tumors, obviously, if too numerous , then ADT is restarted.

Dark-I have followed your path with much interest. You bravely took chemo while you were on Zytiga. A route most don’t travel. I like your imagination. As Frank Sinatra belted out, 🎼 “I did it my way”. That is you! Best of luck!

Yes, became a student of combinational therapies and full assault at cancer. So, ADT, Zytiga and Docetaxel concurrently, actually asked if we can add anything else!

Schwah profile image
Schwah in reply to DarkEnergy

I did the same 3 four years ago. added SBRT to my mets , and Celebrex with zometa (shown to reduce death about 22% in combo). after 21 months I took a vacation. I didn’t PSMA tests every six months and the fourth one showed a “probable met” on L-5. I hit it with radiation and Provenge (out of pocket because I’m not castrate resistant) and now back on Zytega and Lupron. Hopefully heading back to undetectable again but who knows. Studies have not show any substantial difference between CADT VS IADT…..yet

Schwah

DarkEnergy profile image
DarkEnergy in reply to Schwah

"Studies have not show any substantial difference between CADT VS IADT…..yet"

Yes, in other words, studies have shown IADT is not inferior to CADT, it seems like castrate resistance has its own internal clock, just me thinking out loud.

I've read here, if T doesn't rise enough to have benefits before going back to ADT, then the vacation was futile. Amazing how Star Trek's Borg chant "Resistance is futile, you will be assimilated", plays out..

My personal take as I have had 2 vacations each lasting a year. Taking a break allows a mans body to somewhat recover from the effects of ADT. Our bodies are made Toruń on Testosterone. There is also arguments on both sides that taking a break can extend the efficacy of ADT. For me personally it simply feels good to be free of hormones for a while. My two cents worth

Haniff profile image
Haniff in reply to Todd1963

Good for you Bro and I like your positive reasons for taking two breaks. Having said this it’s just that I’m afraid others new on HU may miss your salient points. But thanks for sharing your perspective, appreciate it.

My best to you and loved ones

Haniff

Scotch7239 profile image
Scotch7239 in reply to Todd1963

I am on my second vacation and I love it. It really is an escape from the side effects for a while. As the T increases so does you ability to lose some weight and build up some muscle and enjoy the feeling of normal for a while. I went until my doctor insisted I go back on the Lupron. So far this vacation looks like it may be shorter than the last but still refreshing.

franko1946 profile image
franko1946 in reply to Todd1963

Let me add 2 cents for a total of 4. It depends on age. I'm 75, and on ADT vacation. I am statistically likely to die of something in the not too distant future, even disregarding the cancer. I prefer the end of my life to be more enjoyable than to be a little longer.

DarkEnergy profile image
DarkEnergy in reply to Todd1963

I've been on vacation for 10 months, PSA 0.55 now from PSA <0.02, yet my T is only 27!

What about testosterone during this period?

DarkEnergy profile image
DarkEnergy in reply to dac500

See my response to London441...

DE: you've done extremely well from where you've started-- very commendable Sir. Of concern now, is the PSA doubling time of apprx one month. It's indicating your vacation should come to an end after your scan next week. I would also be tracking T as a reference to rising PSA during this period-- if PSA is tracking upwards with T, it likely is a confirmation of PCa growth. Wish you the best.

DarkEnergy profile image
DarkEnergy in reply to timotur

My current T is 27 and PSA 0.55, my last ADT shot was 10/2020, and at initial diagnosis, T was not ordered with the blood draw. That was enough for me to fire the medical team.

Hiyou can read my personal experience

here:healthunlocked.com/advanced...

Blackpatch profile image
Blackpatch in reply to dorke

This sounds very much like what I gather is the way things are going in Australia, where widely available PSMA is giving MOs confidence that regular scans can be relied on for monitoring when off ADT...

Yes it seems vacations and metastatic disease don’t mix. Still, I can understand the approach of letting the PSA rise to a point where tumors can be targeted, followed by more close monitoring.

However, since you have been both aggressive/brave in treatment (though personally I didn’t think ADT+abiraterone+chemo was any big deal), what’s your testosterone been during this time? You list your sensitive PSA but not the T.

If I were ‘vacationing’ I would be monitoring testosterone as closely as PSA for sure, as well as my symptoms. How have you been feeling? Isn’t this the point?

Ah but perhaps not, or not entirely anyway. Some of us are also (or instead) hoping to manage our disease better this way. Is this correct?

I can’t know if you are motivated by one or both reasons.

Testosterone levels needed! TA says it’s ‘rising with testosterone’ but at what rate and to what level?

If my PSA was rising as fast as yours while my T remained low I’d get the hell back on ADT quick. Doing scans and targeted therapy with non-recovering T and a quick PSA doubling time? Now THAT’S brave.

Only significant concurrent rise in T and noticeable relief from symptoms would keep me interested. Especially in Orgovyx lol. Does this make sense?

DarkEnergy profile image
DarkEnergy in reply to London441

"If my PSA was rising as fast as yours while my T remained low I’d get the hell back on ADT quick. Doing scans and targeted therapy with non-recovering T and a quick PSA doubling time? Now THAT’S brave."

This is my case, brave or nuts could be debated. On my last visit on 08/19/21, seeing PSA 0.55, while having a long time with PSA <0.02, was alarming. Do I get a Lupron shot and start Zytiga immediately.

Well, we (Oncologist and I) decided to wait for the PSMA PET/CT scan in 3 weeks, the opportunity for discovering where's the cancer.

My diagnosis was weird, the tumor extended the prostate and broke off and/or shedded other cells which hovered around the pelvic area. Have spots on my vertebrae, took a biopsy of the largest suspicious spot, came back negative for cancer.

London441 profile image
London441 in reply to DarkEnergy

I see. But again, what is your testosterone history?

DarkEnergy profile image
DarkEnergy in reply to London441

Testosterone per date:

08/07/20 <3

02/18/21 <3

05/19/21 09

06/25/21 27

07/22/21 13

08/19/21 27

London441 profile image
London441 in reply to DarkEnergy

No wonder the MO sees no harm in waiting. Do you know what the T was at diagnosis?

Of course if your PSA continues to rise you can root around for the remnants you know are there, but is there any point in that?

You might eventually recover significant T, but by then significant PSA too.

So what if you get back on the Lupron that nobody wants, but helps control disease! How well did you tolerate it?

DarkEnergy profile image
DarkEnergy in reply to London441

"Do you know what the T was at diagnosis?"

No, and this happens a lot to others, because - at this time, was seeing a urologist that was ADT trigger happy, gave me a 6 month doses shot. Testosterone was not ordered with the blood draw.

London441 profile image
London441 in reply to DarkEnergy

Oh I know, and that is no good. Testosterone and dexa scan should accompany initiation of treatment always, lipid panel too for that matter, and yet so often doesn’t. I’m always sorry to hear this, it’s criminal.

I'm on ADT for life too. Last PSA was 0.56 but gone up ever so slightly the last 3 times. I had a test yesterday but won't get results until maybe Tuesday with in being a bank holiday in England.

I'm on my second Lupron vacation, here's why:

1. My research indicates that continuous use will invariably lead to CrapC (Castration resistant). The PC just finds a way to overcome the Lupron.

2. The loss of libido. Just got married in October!

3. Those damn night sweats and hot flashes. Enjoy sleeping six hours straight!

I'm 62 years old, diagnosed 11/2018, PSA-1036 T-433. Lymph nodes affected, possible bone mets(turned out scan was showing voids, not lesions)

Firmagon immediately, Docetaxel for 4 months, and Lupron(5-3 month doses).

Last 3 month dose of Lupron in Jan. 2020, PSA-1.73. T-<3.

April 2020 PSA-.46 T-<2

August 2020 PSA-.40 T-60

September 2020 PSA-5.34 T-?

October 2020 PSA-8.96 T-593

November 2020 PSA-12.93 T-?

Delay in re-start of Lupron(plan was October), waiting on scans ahead of radiation. Started Lupron (6-month dose) in November.

Scan(high end PET) showed tumor growth on one side of prostate, nothing on lymph nodes.

Radiation Nov-Dec.(with a break for my COVID diagnosis).

December 2020 PSA-6.01 T-?

January 2021 PSA 3.5 T

May 2021 PSA-.2 T-<3

Getting PSA tested next week (and hopefully testosterone).

I'm ready to get the Lupron shot as soon as the PSA begins to rise. My oncologist was reluctant for the first "vacation", but she suggested I do it the second time.

may I suggest orgovyx instead of lupron. I switched to it from Lupron in April and although it's still ADT and T is undetectable, I don't have hot flashes and feel closer to normal compared to Lupron, plus on and off times (T going to 0 and back to normal) are way faster than lupron. I think it's a vastly superior ADT med than lupron. My oncologist says I can go on a vacation next month if PSA is still undetectable.

Really glad to hear this about Orgovyx. Well done!

Haniff profile image
Haniff in reply to Largell

Congrats on the marriage 👍

I ilke you have got it all worked out, 💪

Take good care, stay positive and keep checking on the numbers to be on the safe side.

Haniff

Largell profile image
Largell in reply to Haniff

Thank you!

Haniff profile image
Haniff in reply to Largell

❤️

Largell profile image
Largell in reply to Largell

Update: PSA end of Aug. was .5 Failed to test Testosterone, again! Seeing oncologist this week, maybe it'll happen then.

Largell profile image
Largell in reply to Largell

Saw MO this week. They forgot to flush my port last week, so I had them test my T while they had me hooked up.

T=>400. Oncologist says "test again in 3 months". I told her "let's make it 2 months..."

My urologist moved away...may get a new one and move that up to 6 weeks!

Although your PSA is still low, there is an obvious progression. You need to go back on some treatment.

I can only think of two reasons for a vacation. You are concerned with the long term effects of low testosterone and think a vacation will give your body a break. Nice idea but is it worth the risk? You are having extreme side effects and want a break? In that case I think it makes more sense to address the side effects. I have reduced mine to the extent that ADT is not as horrible as it was when I first began. I can tolerate it and life is pretty good. Minimal hot flashes and brain fog is essentially gone. Getting a lot of exercise helps with pretty much all the side effects as well as diet, quitting alcohol and taking supplements you feel good about.

Haniff profile image
Haniff in reply to spencoid2

Well said, all this advice allows others to think hard and long about going on vacation from ADT. I understand I always loathe the idea of taking the Lucrin jabs but my onco has put me on it for life. Anything to buy myself time and QOL.

Brothers, think carefully and no two persons are the same. You know your body best, your treatment plans, your own fatigue, pain and your coping mechanism. At the end of the day, its good to seek advice and share but you have to make the decision with your caretaker or loved ones whatever may your age be. Is what you want and desire, that will make you happy.

Take good care and stay safe 😷

Haniff

Your psa doubling time is rapid. Not a good sign. Talk to your Urologist about switching to Estradiol patches full time . They are now recognized as better than lhrh agonists in terms of much fewer side effects. I did this after taking vacations from Lupron or it’s ilk and seeing my psa rise immediately. I then got scans which showed mets to bones albeit oligomets ( i. e. few, in my case one or two) which I zapped with SBRT. After that, I realized I couldn’t take vacations , so switched hormone therapy to estradiol.

VHRguy profile image
VHRguy in reply to Break60

I agree with this approach. In my case, I also had my little twin testosterone tyrants removed so I'll never need any anti-androgen therapy. For the side effects from loss of testosterone, I'm on estradiol (the active part of estrogen) patches. I am doing great!

Dr. Wassersug is on estrogen-only therapy too. He has a couple Youtube videos about it. Here's a recorded Zoom meeting where he talked about it.

youtube.com/watch?v=S1CW9zf...

LifeQuality profile image
LifeQuality in reply to VHRguy

Thanks for your post. The video you embedded won't play. Do you have a link to the original source, or perhaps I can just search for videos from Wassersug on YouTube?

Also, I'm curious about your decision to have the orchiectomy. When I sent a note to my urologist, I got a surprising response. He said he's happy to do it, it's a low risk simple surgery, "but it's rarely done anymore". Seems like a really obvious choice, if you know you'll be on ADT for the rest of your life. Is this just Big Pharma convincing docs to use expensive meds instead of a 1-time cheap surgery?

Thanks.

Largell profile image
Largell in reply to Break60

Will do on the Estradiol, thanks! I left out what’s probably the main reason for the vacation this time: How do I know how effective the radiation treatments were without getting off the hormone therapy? And, doesn’t the continuous use of the Lupron lead to CrPC(am I the first to call it CRAPc? ;-/)? What’s recommended after Lupron becomes ineffective?

MamaMia! You know that I’ve followed your progress since you joined the club. It is crazy that your slightly increasing undetectable Psa should cause alarm . I never saw my scans.. T-4 in my case pc tumors exploded from the prostate blocking the bladder and urethra .. you and I knew the severity .. I started in 15 orch in 17 dropping Lupron . But I am still one of only a few in the world taking tak-700( with horrible SD’s ) it’s said to halt adrenal production . I don’t use the triple digit psa anymore . I think It can drive anxiety .. I think if you get back on adt your psa will hopefully fade . brave dropping adt completely . Although I can dream of injecting t some day . It’s kind of like looking down from a high dive at a tiny pool of hope below . Adt sucks . APC gone wild sucks more .. I had high t for most of my life until pc showed up . I and was a risk taker indeed,now no t no appetite for risk.. I’m a pussy . Should I drop my pills after six years of the same and jump from the high dive . Or should I slunk back from the edge and just fade away into the dust . Either way we are all hading towards the falls ..Some much faster than others.. I’m confident that you’ll do what is right for you … I’ve chosen weakness and depletion over chasing t and the old .. me ..Good luck

CAMPSOUPS profile image
CAMPSOUPS in reply to Lulu700

Ha. That damn Niagara Falls again. I'm going to pretend I am on the shore watching instead of out there paddling. Just a fantasy but trying to keep thoughts of the falls out of my mind lol.

Lulu700 profile image
Lulu700 in reply to CAMPSOUPS

I’m scaring people with Alfred Hitchcock images .. sorry . The truth is , nobody is getting out of the boat, keep your hands in , hold on . It’s going to get rough . Most important to take in the sunsets and views along the riverside. Keep rowing merrily down the stream . In the end ,the falls will be our friend. Until then , rock on!

DarkEnergy profile image
DarkEnergy in reply to Lulu700

"Adt sucks . APC gone wild sucks more ..

Yes, my PSA is rising, once cancer then always cancer for sure, but the opportunity to zap the mother tumor is possible. I know, once metastatic then systemic treatments, how can CTC and cancer cells lodged sleeping in tissues somewhere be eradicated.

The rationale was my PCa is still hormone sensitive, but my T 27 does not make sense. Will be revealing from the PSMA PET/CT scan results...

Lulu700 profile image
Lulu700 in reply to DarkEnergy

I’m on your side brother .. waiting ,not knowing is bs..it is the row that we hoe .. pc anxiety .. we all know this too well .. get back with the results please ? are you still commuting? Take care.

Thoughts of a vacation are not remotely within my thoughts. More of the kitchen sink is actually in my thoughts (go for RA-223 now? or radiate a couple of the bone mets that are still troublesome? etc.)

Time has flown. It will be 2 years since DX in about 2 months. DX last week of Oct. 2019/first week of Nov. 2019.

At DX ---PSA 1600+, bone mets from skull to ankles, lymph nodes from pelvis to collarbone. Lupron of course, then Dox/chemo 6 cycles a couple months later.

Nadir was PSA 5.5 and rode along with PSA of 8 to 9 before it rose to 40 and I started Zytiga a month and a half ago. The bone metastases that I could feel festering have calmed down and a PSA check 9 days into the Zytiga showed I came down from the 40 to 16 (next check this coming mid Sept.) Wanted to start Zytiga soon after chemo---that didn’t happen (that’s another story and it is what it is, can’t let it depress me or beat myself up over it)

But nonetheless I am intrigued by this conversation.

I guess it just shows how unique are individual PCA DNA is and speaks maybe to the extent/volume of our own disease, how we respond to TX and thus the options available.

I recall Dark Energy seeing your bio and TX in the past and thinking hope for my future in terms of prognosis not in terms of taking a vacation but actually again we look similar but there are differences, I guess.

Recently It occurred to me that in my quest to see a positive light I read into brothers’ conditions too much trying to equate them to my own and that in reality I may not be in as good a shape in terms of survival time as I tell myself.

Don’t worry though I do for most of every day live thinking like I did before DX which is not thinking about when the end will come and if I do think about it, I think of it as many years from now. Its just occasionally the dreaded thoughts occur especially when its time to be pragmatic about the future of my wife etc.

I knew when I started writing I had nothing to offer in this conversation actually and I guess boy was I right about that ha. Bear with me I guess.

Lulu700 profile image
Lulu700 in reply to CAMPSOUPS

“ survival time” no one knows this . Yours was a bad ass pc .. whoa! It’s a miracle any of us are here .. Best wish’s to you . 💪✌️

London441 profile image
London441 in reply to Lulu700

You guys are philosophers! Present moment living is the only thing I do really well…most of the time😀

London441 profile image
London441 in reply to London441

One other thing that helps me is to remember it was already ‘late’ when I got to this club. The illusion that long life was assured me, due to my otherwise excellent health, was previously front and center.

It’s been helpful for me to be rudely disabused of that notion, even if I would have preferred simple maturity as the vehicle. Never was my specialty 😀

CAMPSOUPS profile image
CAMPSOUPS in reply to London441

Same here. My mother was running thru the traits of her kids when I was about 45 years old. Said I always was one to stop and smell the flowers.It was like a light bulb moment. "Hmmm...she's right".

CAMPSOUPS profile image
CAMPSOUPS in reply to Lulu700

Thanks. I am rooting for you too man!

I should stop bringing up my personal case (apologies to DEnergy for high jacking the post) but I wondered the other day if I had been at Kalibers hospital if they would have brought the hospice team in on me as they did with Kaliber.

I think again I owe a big thanks to the social worker and my first MO.

The social worker found the best MO for me. She encountered my wife and son with tears running down their face as we needed to seek an MO since my diagnosing Hospital's cancer dept. did not accept my insurance.

DarkEnergy profile image
DarkEnergy in reply to CAMPSOUPS

The most compelling reason to start IADT (vacation) was my DX PSA 1000+, after a few months of initial ADT the pelvic area looked like a nebula, massive necrosis the tumor extending the prostate exploded. Eventually, the pelvic scan looked normal, the prostate, pelvic bone and tissue areas looked normal, then PSA 0.02.

A bone biopsy of the largest suspicious spot, lytic findings, came back negative to cancer. This was a scary procedure, watching the TV monitor as they drilled a needle into my vertebrae.

CAMPSOUPS profile image
CAMPSOUPS in reply to DarkEnergy

Wow. I bet it was scary to see. Great that your response was so good. Very good.My PSA never got that low. However shall see now that I started Zytiga a month and a half ago.

Early on my journey I was more fixated on PSA comparisons of myself and you and other brothers here. As we know a lot more to us than our PSA.

Your bone mets were looking disastrous (being lytic vs. sclerotic might be a cause for that ?) but I guess not being from head to toe possibly made a difference. And as always the unique "DNA" of ourselves and our PCA makes comparisons and projections difficult, well impossible.

Sounds like you are in good hands and as long as you keep up with frequent quality scans you might have a nice plan of action.

On the other hand as someone once said here " you want to poke the tiger"? lol.

DarkEnergy profile image
DarkEnergy in reply to CAMPSOUPS

The heavy criticism I'm getting is why risk holding onto PSA <0.02!

I have a great relationship with my oncologist, we fire back and forth, and he appreciates my agenda. Also, the Dana-Farber oncologist team continuously participate in peer reviews - I know first hand, since was an employee (IT department) there.

I'm more interested in knowing my prostate cancer's DNA plans, sure poke the tiger, I've evolved as well in the fight!

When initially diagnose with PSA 1000+, I'm like holy crap, was told PSA over 4 was dangerous, but so much more to this. The findings, my "prostate tissue" based cancer cells broke off and/or shedded to the pelvic area.

Let me explain a bit, the prostate cancer tumor extended the size of the prostate which invaded the bladder wall. Consequently, was screaming in pain when urinating blood, fast forward, the ADT shot shrinked the tumor and caused massive necrosis throughout the pelvic area.

I'm posting all of this, just to give my take, that prostate cancer is much more than a PSA test..

CAMPSOUPS profile image
CAMPSOUPS in reply to DarkEnergy

Yes exactly what I was saying as well about PSA.

You as well as I seemed to have that big symptomatic relief soon after our first adt injection. My wife sometimes thought I was feeling too good lol.

DarkEnergy profile image
DarkEnergy in reply to CAMPSOUPS

Ha, and my wife told me I'm too dramatic...

:)

Lulu700 profile image
Lulu700 in reply to DarkEnergy

Hey , I had the pelvic tumors and they blocked my urethra and bladder . K failure ,then tubes and a foley for 18 months then internal stents .. my Psa high was 20 . You are correct .Pc is more than just Psa , still it’s a sensitive indicator that I should have had starting at 40 and not waiting until I stopped peeing at 53 …. 😳💪my dad had pc . I thought I was Superman ..

Lulu700 profile image
Lulu700 in reply to DarkEnergy

You watched that? Dam !

Seeking thoughts: Dx 10/2019. Stage 4, G9, PSA 3.45! Mets to bladder and pelvic bones. Oligometastatic. Went straight on Lupron and Erleada, and continued thru today. PSA went to undetectable almost immediately. 11/2020 thru 1/2021 had 37 radiation treatments to all cancer sites and Brachytherapy. 5/2021 10 “salvage”radiation treatments. Surprisingly, RO claims NED (no evidence of disease)!!! If all stays the same until November, both my RO and MO say it is reasonable to discontinue ADT. Tough decision. Thoughts?

DarkEnergy profile image
DarkEnergy in reply to Canton44

Well, no one can give you the advice you seek, even the docs formulate options with treatments. So, "no evidence of disease", perhaps should have been qualified, based on our tests and diagnostics technologies.

Just a few years ago, docs would never mention vacation, most likely safer for their careers than our outcome. But, vacation, actually "Intermittent ADT" (IADT) has become a viable strategy, obviously milage will vary...

Doseydoe profile image
Doseydoe in reply to Canton44

Get a cystoscopy done to see what's going on inside your bladder.

Canton44 profile image
Canton44 in reply to Doseydoe

Oh yeah! I’ve had 3 of them!!

treedown profile image
treedown in reply to Canton44

I am at a similar point and my treatment was done with curative intent so it still undetectable in 3 weeks I will be off my meds. I had clear Bone Scans, suspicious LN and much higher PSA.

DE, I have followed you since you joined, my DX was 3/2019. I am also on ADT vacation since January 2021. Just curious did you have PR (prostate removal).hobie

DarkEnergy profile image
DarkEnergy in reply to Hobierat

No, still have my prostate, I'm doing my best to understand my cancer characteristics, which is unique to us.

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