Is ADT vacation safe? : Hi, after 1... - Advanced Prostate...

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Is ADT vacation safe?

Spring_moon profile image
58 Replies

Hi, after 18 months of hormone therapy + xtandi, my fathers MO decided to give him vacation!

My father was diagnosed with stage 4 Gleason 9 with few bone mets in late 2019!

The MO even asked him to stop xtandi!

Being off medication, I afraid the cancer start progressing again,

I also know the vacation May prolong the adt resistance.

Right now I’m extremely frightened! so worry for him, although he is so pleased with the news thinking he can have normal life again!

How long vacations normally last? Is it safe to be off medication with bone mets? How often he must have scans while off medication?

Thanks for your attention. I’m looking forward to your replies.

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Spring_moon
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58 Replies
fireandice123 profile image
fireandice123

I had Gleason 8 with bone mets in my pelvis. After about a year on Lupron with Zytiga that got my PSA down to undetectable I went on an ADT vacation. It lasted about 9 months and it was wonderful. I lost all the weight I gained and got my energy back. I had follow-ups with my MO every 3 months. When my PSA started creeping up I had a bone and CT scan (We wanted an axium scan but my insurance refused it). The scans showed my cancer was active again but it had not spread any further.

I went back on Lupron only and my PSA dropped immediately. I’ve subsequently had a round of RT. Assuming my PSA stays down, currently 0.2, I’ll be starting another vacation at the end of August which is about 18 months after RT. I can’t wait!!

Tall_Allen profile image
Tall_Allen

The only valid reason for a vacation is if he needs and wants one.

Schwah profile image
Schwah in reply toTall_Allen

I’ve seen you say that before Tall Allen. However, isn’t there a second reason? Doesn’t a “vacation“ give your body a chance to offset all the damage associated with blocking all your Testosterone? Things like weaker bones, heart issues, weight gain, muscle loss....

Tall_Allen profile image
Tall_Allen in reply toSchwah

It usually doesn't allow that. Testosterone doesn't return fast enough, and PSA rises too quickly to allow for any of those changes. But there are certain strategies, like estrogen, Orgovyx, and BAT, that may allow for more of that.

in reply toTall_Allen

Sounds like the cancer enjoys the benefits before you do.

Tall_Allen profile image
Tall_Allen in reply to

Good way of putting the dilemma.

Karmaji profile image
Karmaji in reply toTall_Allen

Interesting....If ADT is well tolerated, you will go for it even when PSA < 0.006 stable for a year with no wiggles, and for how long for oligo bone metastasis

Very confusing and contradictory, the vacation story of ADT

More clarification may be useful for us all...

Thanks

cesces profile image
cesces in reply toKarmaji

There is a case for intermittent adt.

But only if you can knock the cancer down with each round.

Not if it is bulling its way through.

I would add psma treatment to ta's list of options.

Canoehead profile image
Canoehead in reply toTall_Allen

That’s the oddest thing you’ve ever said here, Edel, especially in the absence of evidence. I went undetectable 5 months after I started treatment for metastatic stage 4. Doctor took me off all meds 18 months later. That was two years ago. Many others , I believe, share my good fortune. Still undetectable. But I still take a bunch of the supplements that you also think are worthless. Open your mind for one second to viewpoints other than your own.

Tall_Allen profile image
Tall_Allen in reply toCanoehead

What exactly is the oddest thing I've said, canoehead? Everything I've said has evidence - good evidence. You can have any viewpoints you like, canoehead, but there is only one set of facts.

Canoehead profile image
Canoehead in reply toTall_Allen

You do a disservice to this group and to yourself by presenting your views in such absolute terms and suggesting that there is only one right way to do things. But Smarter people than me have already figured out there is no point in arguing with you, so I won’t. Medicine, like most other areas is seldom all black or white. I happen to think the most interesting parts are the grey areas. So, for now, I’ll just concede you are the smartest guy ever and wish you peace and good health.

Tall_Allen profile image
Tall_Allen in reply toCanoehead

I think you do a disservice to yourself in imagining that you are the singular exception to the rules. You may be, but is that really a bet you want to make?

jersy profile image
jersy in reply toTall_Allen

Learning the scientific method should be required in school. We would not have people so susceptible to scammers (and conspiracy theories).

cesces profile image
cesces in reply toTall_Allen

There is a case for alternating on/off adt early on, is there not?

To delay adaptation to the adt?

Not so long ago, I recollect that was considered cutting edge medicine.

Tall_Allen profile image
Tall_Allen in reply tocesces

No. That's part of what they looked at in the Hussain trial. They found that castration resistance occurred at the same time, whether the patients used iADT or cADT.

In the TOAD trial, which looked at early vs. delayed use of ADT, the early users were non-metastatic and used IADT. They found that the early users became castration resistant after the later users.

All the mHSPC trials found the same thing - that early use of advanced hormonal agents delays castration resistance.

The effect on tumor load is much stronger than the effect on selective adaptation.

cesanon profile image
cesanon in reply toTall_Allen

Hmmm very non-intuitive. That the cancer selectively adapts to being starved of testosterone, even when not starved of it.

I guess complex biological systems don't always share their logic. LOL

That's why we have clinical trials.

Still, makes me wonder if the trials caught everything.

I know just a few years ago Sartor expressed an opinion that there is a benefit to holding back ADT until when you need it or because the effect on selective adaptation outweighs the effect on tumor load if the tumor load is light and non-aggressive.

He gives me the distinct impression that he is a urologist who does keep keenely informed of all research of consequence.

This iADT or cADT issue would seem to be an important issue to a whole lot of people.

Do you have any link or links on your blog that address this particular issue?

Tall_Allen profile image
Tall_Allen in reply tocesanon

You are misunderstanding. The reduction in cancer cells has a much bigger effect on progression than selective evolutionary pressure. It is very logical. You can look up and read Hussain's report. Sartor may have made his comments before the report was out - I have no idea.

cesanon profile image
cesanon in reply toTall_Allen

Most likely I didn't understand what Sartor was saying. LOL

I still have an undetectable PSA and I'm really afraid to take an ADT vacation because it's giving the cancer a chance to re-establish itself.

Once that happens, any number of mutations might make the cancer more aggressive and difficult to treat. I really worry that I won't be able to return to where I am now when the PSA starts going up and who knows what form the cancer takes.

Of course that could happen anyway, but if I take the ADT vacation and things do take a turn for the worse, I know I'd be blaming myself for that.

bean1008 profile image
bean1008 in reply to

That’s the theory, right Gregg? The danger that your current drug regiment won’t work for you anymore when you need to go back on it. Now you’re looking at starting chemo. Ugh.

cesces profile image
cesces in reply to

If it is undetectable, that is when you should go on vacation.

How does he handle the adt ? If not that bad,it’s risky to vacation . But if he wants to with his doctor monitoring him , it’s his choice . I’ve been on adt over six years with no t .

Spring_moon profile image
Spring_moon in reply to

He is complaining about fatigue and frequent hot flashes , but he says they are tolerable! May I ask what is your Gleason score ?

in reply toSpring_moon

Both are common side effects .. I was a 4 +4=8 Gleason

Mascouche profile image
Mascouche in reply to

Why WAS a Gleason 8 rather than AM a Gleason 8? The Gleason can change?

in reply toMascouche

I know nothing . I was talking about fatigue and hot flashes

Karmaji profile image
Karmaji in reply to

I am testing ADT 3 months to gradually 4 or 5 months with no vacation under cooperation of my Oncologist with PSA control.Logic is if same 3 month dose is suggested for BMI 30 .....why not use same dose over 4 or 5 months for person of BMI 18....sure there are no RCT for such variations.

Onco gave importance to uniform PSA over a longer period as positive ... He says watch out slight observable peaks ...interesting...

For example same PSA <0.006 over 12 months excellent

But if 0.006 0.006 0.01 0.009 0.006 etc. little up down...a bit to watch out carefully

any comments ?

cesces profile image
cesces in reply toKarmaji

Those lupron shots are pretty accurately timed. They last the time they are supposed to and not longer.

noahware profile image
noahware in reply tocesces

The shots also fail, in a small percentage of men, to achieve the desired low level of T. Some of the factors might include the men's prior T levels, their ages, and their BMIs. But I'm not sure how you would predict a specific response for any given individual, by varying the timing, based on a factor like BMI... seems like getting "a shot" in the dark, so to speak!

With a Gleason 9 metastatic prostate cancer, my first question would be why a vacation from the drugs that are working? If the only reason is if your dad wants one, then that is his decision. Hopefully he made this decision with the full knowledge that he has a disease that can rarely be beat.

I would worry that my PSA and T would rise and metastatic lesions would grow unchecked. However, that is me. I wish him the best.

Gourd Dancer

Lettuce231 profile image
Lettuce231

I'm not surprised that you are worried, that seems very early to think of a vacation, I don't see any reason for one having read your responses to the questions posed here.

I've never had a break from treatment and I never will, although the treatment is doing its job, the reason it's doing its job, is because, like everyone else here, I've still got cancer, it never goes away.

To me, to take a break, would risk the cancer gaining the ground we've conquered, all of us have been through a lot to reach a certain point. I would much rather have some annoying side effects and feel safer, than a holiday on thin ice.

I hope that your dad keeps well and makes the right decision for him.

Zetabow profile image
Zetabow

I asked my Oncologist about an ADT holiday, my PSA went from 1386 to 0.28, his worry was if my PSA started rising he may not be able to get the control back.

It seems every case is different as with opinions between Oncologists. I didn't take the holiday and Xmas my PSA started rising, my Oncologist is unable to get the PSA down so it seems it was a good call on his part.

MarkBC profile image
MarkBC

I don't like the ADT side effects but I've been able to adapt. I won't stop taking the ADT because I don't want to risk having the cancer start growing again. I have just accepted that my life will never be the same as it was before my cancer and that's okay. There is still a lot to look forward to each day.

Karmaji profile image
Karmaji in reply toMarkBC

Who cares life before...Now it has become a new norm and live it fully....

APC does not care if I like it or not....

But I can recondition my mind to the new norm.....living joyfully...

Thinus profile image
Thinus in reply toMarkBC

I have basically the same attitude towards my life and my cancer. I take short ADT holidays of two months about every six months. My PSA was for the last four years 0.03. During a drug holiday it climbs to 0.4. It is then that I start swallowing Casodex again. And it works for me. I am now in year 6. I have tubular prostate cancer, fast and aggressive. But I am thankful for every day.

Danish-patient profile image
Danish-patient

I would never ever dare take a vacation from my medication. When I feel bad, I know the cancer is being stressed even more, and I keep going.

GP24 profile image
GP24

Here is an article discussing intermittent ADT:

nature.com/articles/s41585-...

The authors mention it could be used with few bone metastases present.

Here is a trial that tested intermittent ADT with patients with bone metastases:

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

In spite of the large number of patients included they could not determine that intermittent ADT is inferior.

I would continue with Xtandi and drop the hormone therapy. This will make your father feel much better because the side effects are mainly caused by the hormone therapy. Xtandi alone will let the testosterone level recover to normal levels or even higher and thus will have the same effect as a hormone therapy vacation. The "vacation" will be much longer though.

Stevecavill profile image
Stevecavill

I’ve been off for 4 years. It’s actually my second break. I was diagnosed 8 years ago with mets to spine. The evidence for or against intermittent is inconclusive. On that basis I’m happy to do it for the other health benefits for cardiac, blood sugar and bone health

depotdoug profile image
depotdoug

I’m with you Spring_moon,My latestest PSA Hit all time low this last Thursday. 0.200ng/mL!!!

Yes, I’ve been on Lupron 90 inj’s, Abiraterone (only 250mg) per day min level and of course wonderful Pred for 21 months….

ADT vacation request this Tues @ my Med ONC O/V. Wonder what he wil say or his expression??

Should i or should i not?

Doug

jfoesq profile image
jfoesq

I will only state my personal history. I had 3 vacations during my first 6 years or so. I was dx with Gleason 9, PSA in mid- 40s and about 4-5 bone Mets and 1 lymph node met. My first vacation lasted 20 months from injection of Lupron. My 2nd lasted 12 and my last one only lasted 6. So, there will be no more vacations for me. I am thankful I had them and am still responding to Lupron and Zytiga after 9 years, but I have no idea if the vacations had a positive or negative effect on my cancer.

Jvaughan0 profile image
Jvaughan0

Is the blockage of testosterone a guardian at the gate keeping cancer at bay? The current answer is yes for most men. ADT feels like an insurance policy, a scientifically endorsed, conditional, and limited guarantee for longer life. Even within the small sample of this group, anecdotal experience questions the need for continuous ADT among the very studied, knowledgeable voices urging us to not take chances with this insidious condition. Are we taking a risk to reclaim testosterone even for a short while? Probably. Is the risk worth taking? Sometimes the medicine is worst than the cure... and in this moment, this lifetime, there is no cure for metastatic cancer. A good decision isn't always the right decision.

I think it may be appropriate in some cases such as those with low disease burden and long PSA doubling time who are often older men just managing the disease with a minimalist approach. Those older men that have decided at their age not to take an agressive approach to treatment due to recovery time/side effects, etc. I would certainly consider a vacation if were in that situation.

Magnus1964 profile image
Magnus1964

I am not a fan treatment "vacations". As you fear, I think vacations can give the cancer a chance of producing new cell lines that can find a work-around to the treatment. If a treatment is working, don't stop.

in reply toMagnus1964

If a treatment is working, don't stop.

That's the key.

Herman_PSA_OK profile image
Herman_PSA_OK

Vacations from ADT are nice until you have to come home. I'm Gleason 8 myself. Those meds help control the advance prostate cancer. How long? Every man is different. I've learned to not worry about how long they will work because (in my opinion and scary experience) you don't have any control over how long? Why stress about it. You have the here and now while the PCa beast is dormant, not cured under the prescribed medication.

Gleason 9 is more aggressive than my Gleason 8. When my PSA started to increase, it started doubling in a few short months and then weekly. The modified 18-month ADT vacation was over and my PSA was off to the races. It took MO bumping up to Lupron + Zytiga + Prednisone and then Losartan blood pressure medication from the side-effects. This once dormant beast was roaring to kill me.

Was my18-month vacation worth it? In hindsight, I should have ended it earlier had it not been for the Covid-19 lock down and disruptions. So I have a second chance now. I don't think I will try that again. I'm relieved and blessed that I'm still alive to live each day to its fullest and tell my wife how much I love her and be able to serve my community.

You father has to decide for himself. If he has other additional health issues, that complicates you decision. If it ain't broke, don't try to fix it. Stay the course when something is working.

Herm

6357axbz profile image
6357axbz in reply toHerman_PSA_OK

You say,

“It took MO bumping up to Lupron + Zytiga + Prednisone and then Losartan blood pressure medication from the side-effects. “

Did this bring your PSA back down again?

Herman_PSA_OK profile image
Herman_PSA_OK in reply to6357axbz

My PSA got up to 49.8 and it has been coming down as fast as it went up. My blood labs last month was a PSA of 9.1 and this coming Wednesday I have my monthly blood labs and appt. with the MO. So, yes it is going down, down and hopefully below 1 if possible. No vacations for me. That was enough excitement.

Herm

Haliday profile image
Haliday

Our experience? My husband is stage four (diagnosed in 2013 with oligometasteses) and has had six vacations lasting between 7-8 months from last shot to next. He generally gets another Lupron shot when his PSA hits seven or eight. Then undetectable for 12 months? He gets another vacation.

The vacations are great. Erections and even orgasms return. And he feels stronger and can even add some muscle mass. His balance improves dramatically. It is our understanding that vacations have no relationship to progression or variants of the disease. Long live vacations.

We all have to make our own quality of life decisions.

Pwjpp55 profile image
Pwjpp55

My ADT vacation was a disaster. In 3 months my PSA went from less than 1 to 60! Thankfully, ADT and zytiga got it back down to less than 1 again for 3 years. My advice is to proceed cautiously.

Mascouche profile image
Mascouche

For those who have not taken a vacation in years, how do you protect yourselves from diseases that originate from the lack of testosterone such as osteoporosis, Parkinson or alzheimer? Some kind of supplementation?

Bacana profile image
Bacana in reply toMascouche

Yes supplements - vitamin D, K, magnesium & boron. Hubby has been on continuous ADT since 2012, currently has osteopenia. If he progresses to osteoporosis we’ll make a decision at that time as to how to proceed.

MichaelDD profile image
MichaelDD

I am currently on a ADT vacation. I have 2 of the best oncologists in the U.S..And they both agreed that this was a good thing for me. I am currently on my 9th month no shots no Zytiga. I just turned 67 years old. This is my second bout of A cancer. Successful mastectomy and breast cancer survivor for 15 years. I was in a major car accident, with somebody hitting me from behind. After six major spinal surgeries I actually got myself back to jogging again. This stage of my life I'm tired of the effects of all the drugs and medicines. Do my bones ache because of ADT/ Zytiga or the residual of my past cancers and/or spinal surgeries?. The simplest thing such as going to get a new pair of glasses (without seeing double) has been amazing. A gentleman earlier commented in another post about being or having a "pain in his ass". I've had that. It was so bad during my ADT. Now it's gone nobody knows why. Was it my spinal surgeries or the residuals of cancer again? I don't know. I think the bottom line here has to be your dad's choice. I drove 200 mi yesterday to see my 10-year-old granddaughters softball tournament. Spent all day there and then came back home. Not something I was doing before I stopped the ADT. I stopped literally everything as far as pain, and any other type of medication for that. I take two Ibuprofen per day. Fatigue isn't as bad but it is still there. Occasionally on a long days or an outting I will take a Ritalin. Something my Palliative Care doctor suggested.My anxious moments are every other month when I have to find out if I have to go back to Lupron and Zytiga. I have my blood tests and chest scan next to see what my lungs look like, and where my PSA stands. My PSA has been less than 0.014 for 2 years. I from my heart have told my three sons that quality for me is a must. I feel I made the right choice in my ADT vacation. It is my choice. Others have their opinion but it is MY choice. Best to you and your family.....

6357axbz profile image
6357axbz in reply toMichaelDD

Who r your oncologists?

chips1942 profile image
chips1942

Hi, I’d like to share my thoughts about a biochemical recurrence. Any man who has had a recurrence is in a real dilemma. I’m on my 2nd one. Many factors need to be considered (age, tumor burden, location(s) of your cancer, the level of success with ADT drugs, the psa max you have selected, PSA doubling time, long term whole body impact of adt/chemo, risk of failing adt etc. We are all at risk for both side affects & negative outcomes with whichever path we choose. I’ve chosen conservative vacations. Kicking the can down the road, living a good life and anticipating the next breakthrough in PCa treatment. Actually, several factors have come together recently which will enable us to make better decisions for our care. PSMA scans will allow many of us to get a better picture of where the cancer is located and if it is progressing or not. Relugolix will allow us to start or stop treatment more quickly, with less cognitive impact, to better assess the value or futility of a vacation. Lu177 PSMA & trials using Bispecific antibodies may allow us to target our mets more effectively with less risk than current systemic treatments. This is a more enlightened time for men with prostate cancer and I’m optimistic about our future!

Stoneartist profile image
Stoneartist

Fascinating discussion - illustrating very well the tremendous variation that PCa shows in its targets. I am 18 months into Zoladex with 6 sessions of Docetexel at the start, Gleasom 4+5, PSA from 1000 down to about 1.5 today and still slowly falling. I am thinking that the ADT works well to repress the cancer - but once we reach a nadir it seems reasonable that we dont need a quite so heavy tool to prevent a progression than is needed to give a regression. The idea that we should space the ADT to longer intervals seems logical. I wonder what other things may help in keeping it at bay. I have completely changed my diet from before PCa - and am curious as to if/how the body itself, with a suitable nutrition, can keep PCA at bay. But with the vast variations of the disease out there I do not expect to get a quality controlled answer on that. The only way would be a PCa vacation, and thats like experimenting on myself (as I am sure TA will be quick to point out).

mangeycritter profile image
mangeycritter

It seems to me that nobody knows if it's safe or not. Of course, as many of the better informed posters here have pointed out, PCA is an idiosyncratic disease, and even MO's often disagree on treatment protocols. My experience is probably typical. Very briefly summarized: RP in 2012, BCR in 2016, failed radiation in 2017, told by MO at Sloan that "I did the right thing" by declining ADT when PSA was 0.46, told by MO at Hopkins when PSA was 0.79 that he would not start ADT until he sees "disease to treat", by which he meant observable mets on basic scans, basic scans, axumin scans always negative but PSMA in 2019 showed 2 thoracic nodes, doubling time 9 months, upon advice of MO at Duke began monotherapy ADT in May, 2020 when PSA was 5.70 (not a typo) and T was 486. Since then PSA always <0.064 and T <7. MO at Levine was "surprised that Dr.----- did not recommend Abiraterone" in addition to basic ADT, upon advice of 2 MO's began vacation May 19, 2021, inquired of MO at Duke when he would recommend ending vacation, "probably when PSA gets back to where it was before first ADT", which was 5.70. I think I understand that most, if not all, posters here would be surprised at a doc allowing PSA to rise to 5.7 before going back on ADT, but this MO is one of the leading guys on the East coast. I guess it's possible he's as confused as everybody else, but I'm going with his recommendations. All this of course is just my opinion, with the caveat that opinions are like parents---everybody's got 2.

MateoBeach profile image
MateoBeach

You can see how intermittent ADT, IADT, generates many perspectives. Good for some more than others. What is KNOWN is that IADT is not an inferior approach to continuous ADT in appropriately selected patients, even with bone mets. The benefits to the body as described by others are worth a trial. He can have PSA monitoring even at one month and it can be stopped when needed limiting risks. GP24s idea of continuing enzalutamide during vacation is interesting and worth discussing.

lewicki profile image
lewicki in reply toMateoBeach

There is a few Oncologists at major cancer institutes that are doing IADT and maybe T only with results. I wonder if the fact that there is a lack of the mighty dollar in there bringing major trials with perhaps combo treatments. What is the cost of one chemo treatment and how mush goes to the doctor and the hospital? Why would anyone do a trial on a cheap drug with no patent rights, spend millions for us poor souls? Can't help but wonder.

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