Jim's doctors are going to talk to him about a treatment vacation. Is this from Lupron & Abiraterone, or just one of them? He's been <0.04 for over a year and ultra sensitive shows <0.02. He's very hesitant to stop something that's working. A vacation would be nice, but I'm with him. We are going to make a list of questions.
Any input on the pros & cons would be appreciated.
I am against it, if it works don't fix it
Hello
It's obviously a person choice but I am on my 2nd vacation. The first vacation last two years and then PSA climbed slowly. Radiation and Lupron + abiraterone. 3 months later started vacation again. Two years into this recent one and undetectable. Personally I have thoroughly enjoyed the renewed energy and certainly don't miss the side effects. While I am no physician but see great ones at Seattle Cancer Care, I personally wonder if the impact of meds following a vacation is more effective as I am not building med immunity and maybe that's is beneficial vs continuous
That works for me
You bring up exactly my questions
- does the vacation prevent building immunity
If the objective is to give him a relief from castration they have to stop lupron and abiraterone and monitor PSA and testosterone, to see what happens with the PSA when testosterone goes over 50 which could take some time, measured usually in months.
He needs to be weaned slowly from the prednisone .
I do not know of any info indicating a benefit or a problem when these vacations are done.
There is adaptive therapy info with abiraterone but it is different from a vacation of a continuous treatment.
nature.com/articles/s41467-...
The RCTs treated the patients continuously until failure of the treatment.
If Jim is tolerating his treatment, what is the purpose of the vacation? There is no advantage to a vacation unless a break is desperately needed.
Does a vacation help prevent building immunity ? That could be the only thing in my mind that would warrant a vacation if the person is tolerating it well
No benefit has ever been found. Castration resistance is not delayed, if that's what you mean.
Jim's MO & RO at UCSF say the same thing. Does not delay resistance and does not affect overall survival.
Don't claim to have the certain answer, but re studies of continuous vs intermittent ADT, this and many other reports...
nature.com/articles/s41585-...
Can we rely on our MOs to provide guidance on this? Hopefully yes, in practice ???
I would suggest that Doctor suggestions on treatment will include their experience with patients and that treatment. Given that we are all different in our reaction & noted side effects plus all the other variables each Doctor might see benefits differing from another. Trust your doctor's but question always. Then choose. Never second guess your choice.
I'm confused by this, TA. Vacatión for me is about QOL (energy, happiness, weaker hot flashes, etc) , but also about saving our bones from the deterioration that ADT brings. Is this not an advantage?
It makes less difference to QOL the longer one does it (see Table 2):
nejm.org/doi/full/10.1056/N...
I haven't seen anything about preserving bone mineral density. A big question is whether the vacations long enough for testosterone to fully recover.
I am certainly confused about this "vacation" or just not needing ADT any more? Are you all saying that once you start ADT, you will be on it forever?
Hubby was told when dx in Jan 2021 that he would be on ADT for 24 months. Nothing was said about "forever".
His RO said he also thought 24 months was good idea and would hate to see Jeff on it longer than that
The MO is worthless, as I have mentioned before; he too said in 2021 it would be 24 mo. Now when I ask if that is still the plan since January 2023 is 24 mo., he says that stopping would be a vacation. So why the double talk?
On ADT and Zytiga, Jeff has: lost tremendous amount of muscle mass, is horribly fatigued and sleeps 11 hours at night and naps 4-6 x /day in front of PC He has no strength, and bad cognitive issues have started He lost bone density while on Boniva--18 months wasted--now has osteoporosis in both hips; primary care started him on Prolia--trying to get him on Evenity but only FDA approved for post-menopausal women he has fallen a couple of time, luckily no broken bones but horrible would on leg PSA has stayed <0.06 (0.01 on sensitive) but T hasn't gone below 15
orig DX was 1 side only of prostate, with 3-4 "possible local nodes involved and treated as positive. He had 8 weeks of Protonm with boost and RO said possibility of being cured. On ADT since jan. 2021 and ADT since Sept 2021
DO not know what we should do or why he was told 24 mo. of ADT and now told stopping would be a vacation.
The horrible physical effects as well as cognitive issues are certainly not a good QOL for him
There are many reasons to take ADT. It is important to understand why you are taking it.
If you are receiving potentially curative radiation, you may get anywhere from 4 months to 3 years of ADT with it, depending on your situation. This is called "adjuvant ADT." At least 2 years are given if there is known or suspected lymph node involvement. There are no vacations. Taking a vacation would be like going off and on antibiotics for a bacterial infection - it selects for the most resistant bacteria.
If you have been diagnosed with distant metastases, either when initially diagnosed or after a failed attempt at curative therapy, you will be given lifelong ADT also called salvage ADT.
Some men who are taking lifelong ADT choose intermittent ADT rather than continuous ADT. Intermittent ADT involves periodic vacations.
THANKS, T_A--don't think this was ever explained to us--another question for us to ask the oncologist. Hubby's RO was more informative and knowledgeable, but he said the ADT is not his call even though he things 24 mo. is enough.
Guess we should question both and take all of it to MO--we are looking for another who will know what Prostate oncology is all about.
as always, thanks very much T_A for sharing your knowledge
Thanks T_A, but if you have been on adjuvant ADT for 24-36 months, with an undetectable PSA, isn't it then SOC to stop the ADT and see what happens with the PSA? I think some may call this a "vacation," which can cause confusion.
I agree - it's not a vacation, it's the end of that treatment.
Apologies for the late response. Jim & I both came down with Covid. Finally feeling well enough to function. Anyway, he's tolerating the meds well, and if there's no long term advantage to a vacation, I don't see the point, and especially if it will require more scans sooner rather than later. I will not try to influence his decision. But right now he's very spooked about stopping.
Thank you TA, always look for your knowledge.
I waited until over seven years with no signs to finally drop adt . I was scared. So were my docs . Three Mos over those years and not one suggested a vacation for me . I did the orch 2017 allowing to drop the lupron shots . Each to their own . I think it’s risky to drop it so soon when it’s working so we’ll . Some have done Lupron for close to two decades .many over ten years .. . Of coarse , I’ve been devasted by side effects and no t?
Thank you. I'm uncomfortable that they're suggesting it. We go to UCSF, so I know they're top of the game. But still nervous. Especially since Jim can't have spot RT if anything new pops up.
LOL!! Only in this group do I immediately see the word "vacation" and read it as "HT vacation." I was dx. in 2009. Quickly failed RP and SRT. Responded very well to HT. SE were no fun but tolerable (kept on working and working out). I've had 4 HT vacations ranging from 1-2.5 yrs. I always feel I'm stretching out the time to CR, but I'll assume the reality is it's not. But the diminution of SE is worth it. Unfortunately last vacation ended a week ago. Orgovyx this time. Good luck.
Mel
Personally, I live for my ADT vacations. I don’t assume that I’m prolonging the time to castrate resistance; I just hope I’m not shortening the time to CR, with these vacations. But I feel so much better when I’m off the ADT that it’s worth the risk.
I am in the same boat. Onco has suggested a vacation after nearly 36 momths on Lupron .Hubby is very keen to stop I am very hesitant 🥲
Think hubby should decide ...his body?
agree! But we are retired expats in a foreign country dealing with this beast. If anything bad were to happen I would have to leave the country in thirty days. I hate this disease & the uneducated say its the best cancer you can have !Reading all these posts it clearly not so . I wish i had known all what i know now at time of diagnosis in 2019. Anyway happy new year to all! Good health & happiness
Maybe after 36 months might not be as scary, don't know. I know Jim would love a vacation, but he also says he doesn't want to start with all the scans again or give the monster an edge.
Truthfully , I was chicken to stop adt and my docs thought the same . I went undetectable after my first one month firmagon shot and I’ve stayed clear ever since . I did a lot of alt med ( high dose vitamin c iv’s ) my first two years . 2 yrs of Lupron then an orchiectomy allowed me to dropped the lupron but I stayed on a pill test adt drug for seven yrs until I finally dropped it too ,7 months ago . I started off in bad shape and no one wanted me to go back there again . I ve never fantasized about vacations or a return to Testosterone .I accepted my lot ,and the short end of the stick .I just wanted the pc to stay gone forever . 8 yrs in March no signs no t no Psa . Whoohoo! Happy new year!
my opinion - if the beast is sleeping then don't wake him up. Instead count your blessings and enjoy your life.
Stay on the hormones. Yes the side effects can be a negative, but tolerable. Consider that a small price to pay for tranquilizing the beast.
Good luck whatever path you decide to follow
Repeating the study I linked above......something to ponder......
Thank you. Tolerating the SE very well, CMP has been good.
It appears to us that many of the top physicians such as Seattle are suggesting a vacation for men who had low volume Mets and whose PSA became undetectable. We heard that recommendation from one specialist and are in the process of seeing a consult with another.
There have been several leaders speaking on UroToday who seem to believe in Intermittent therapy. We’re not sure how they adopted this since it appears the studies such as Stampede were done with continuous ADT. Have you read the Hussein study about this?
After two years my husband’s blood pressure was wildly fluctuating on Abi, so he is now vacationing from that while he decides about Lupron vacation. Or whether to restart Abi or one of the expensive other choices.
Yes the BP has been a bit high, but it's more Jim's hesitation to treat it properly for fear of losing what "function " he's gotten back from the cialis. But he's going to have to let his Dr get more aggressive if Jim doesn't do the vacation. Have not seen that study you refer to, thank you.
lm kind of in a similar situation. In summer 2020 bicalutamide stopped working for me. PSA went from <0.06 to 1.1 and a PSMA pet found a 32 mm metastasis overlapping a previous radiation area (so it could not be removed by radiation or surgery) I was put on Pamerolin (Triptorelin). This stopped working after only 2,5 months as I was now fully Castration resistan. Then late 2020 and beginning of 2021 I had 4x Lu177 treatment to shrink the metastasis so it was safe to radiate it. Immediately after end of radiation may 2021 PSA went from 1.1 to <0,05 and has stayed at that level since. I’m still only on Pamerolin (a drug I’m Castration resistant to and has been since aug. 2020) Doctors has said they will try to take me of Pamerolin in summer 2024 to see what happens. One doctor even said to check if I’m cured. But don’t know if that’s a good idea… would love to get my energy and strength etc. back though. Yes a lot can happen until 2024 but the talk is on ADT vacation so hopefully it’s okay to ask
Bill had been on both for about 18 mo starting after chemo through a year after radiation. Stage 4. Had been non detectable and no evidence of disease for a year. Began falling, so doc immediately took him off the zytiga while sending him immediately to a neurologist. ( helps to fall in the doctors office) ( wasn’t the med was nerve damage in his leg from radiation. ) Bill asked as long as zytiga stopped, how about Lupron too. Doc hesitant but said ok. That was 5 years ago. Has PSA every 6 mo just reduced from 3 and yearly c11 choline pet scan. If it wasn’t from the falling I’m not sure he would have been taken off at the time he was. For us, it was why not try, maybe doesn’t need to be on a med. since the prednisone was only 5 mg, was off that in like 2 weeks. Some docs probably do one med at a time. Each doc is different.
I can only talk about my journey, he in conjunction with his medical team will have to decide about topping treatment. If that decision is yes based on the clinical data such as PSA tests, imaging...then you may want to discuss and agree on a plan to actively monitor and what that entails - PSA tests at what frequency, every three months or...checking testosterone, will you image, if so, at what frequency and with what, will there be other tests, CBC...you will also want to develop criteria and decision points for resuming treatment based on the clinical data derived from your active monitoring.
In my case, after surgery and SRT failed and a C11 Choline scan showed PLN involvement but no bone or organ, Mayo *Dr. Kwon) and I agreed on a treatment plan that included 24 months of Lupron, six cycles of taxotere and 25 IMRT (45Gya) to the entire PLN system. They had also discussed adding Zytiga but based on my response to the treatment, decided it was not necessary.
Based on my response, Mayo agreed to stop the Lupron at 18 vice 24 months. The last shot (a 90 day one) was May 18. By October my T was at 135 and by Feb it was up to 482 or so. My PSA has crept up in 2022, I met with my medical team last week and they agreed to do one more PSA test in Feb, if it increases again, image and decide from there if to treat and with what.
I will say that the four plus years off treatment has been enjoyable. My decision worked out for me based on my clinical data and my tolerance for accepting a degree of risk by stopping the treatment when the clinical data indicated in concert with my medical team nd a plan to actively monitor.
My medical team and I have discussed treatment options but with more definitive clinical data should the PSA continue to rise and imaging show evidence of PCa. I will say this, that treatment decision will again be for a defined time, will include systemic therapy and depending on the location, radiation.
That's me though, with the support of my medical team.
Kevin
I don't post often, and don't pretend to approximate the knowledge of many other posters, so here I'm just relaying my situation and doc's advice/plan. Treated by an MO at Duke. Began ADT in May, 2020 when PSA rose to 5.70. Subsequent PSA in June, 2020 was <0.1. After 1 year undetectable on ADT, at doc's recommendation, started vacation May 19, 2021. Undetectable every 3 months since. 19 months out, Dec, 2022 PSA <0.01, T = 485. What is the timing for ending vacation? MO at Duke says when PSA rises to the level when ADT was begun in May, 2020: 5.0 to 7.0 (five to seven, integers). Having seen docs at MSK, JH and Duke, I'm comfortable with this plan. Methinks age is a variable often omitted in many posts, and perhaps is an unspoken consideration by my MO. I am in very good health otherwise, with squeaky clean CBC & CMP in Dec 2022. Duke doc said physiologically I'm 10 years younger than my age, which was 81 on 9-11-22. On the other hand, Gallium PSMA scan in 2019 showed uptake in 2 thoracic nodes. Otherwise, symptom free and but for BCR in 2016 (4 years post-op, DT 9 months) and the positive PSMA I'd be oblivious to the fact that I have PCA.
What was your original Gleason score? And other risk factors such as SVI or PNI or ECE?
Gleason 3/4. 10% on 1 side, 5% on other side. T2c. all else negative
Intermittent ADT is not inferior to continuous.
The vanguard, for the MO’s willing to promote intermittent ADT, is to select carefully and monitor even more carefully. Often the problem is placebo effect convincing the patient that the vacation is making a huge difference when that isn’t possible. Examples would be a testosterone that rises from <10 to say, 65 while the man claims he’s feeling vastly more energy strength etc. Not nearly enough T to make that level of impact.
A more graphic example is a man who says he’s transformed 3 days or whatever after stopping ADT. Again, not actually possible. I have seen it more than twice.
Placebo effect is real though, so if a guy says he’s better, who’s to argue? I did not personally notice any difference until my T reached 300 or so, but I admit I started feeling GREAT at 125 because I knew more was on the way.
Orgovyx is a game changer in this regard, but only to a point.
Over and over it is proven: the two metrics of VO2 max and strength are by far the greatest determinants of longevity AND qol. The more diligent we are at maintaining those, the less we are relying on vacations to provide relief.
For those sedentary (most of us, unfortunately) vacations don’t have nearly the impact that they could.
A very personal decision to be sure, but it’s the responsibility of one’s doctor to help assess the risk factors, pros and cons etc. Age, time on ADT, disease stage, fitness and strength (biological age), mindset, degree of tolerance to side effects and more all figure in.
Over treatment is a real thing but so is putting QOL first only to regret it later.
I’m in the “ no vacation “ boat …. My doctors want me to stay continuous as well. I’m among the extremely high met load group , pa’ve with ‘em head to toe , psa1400-1600 at start.
For me it’s better for me to keep my foot on their necks …keep ‘em down as long as possible without the chance to regroup and flourish. There seems to be numerous perspectives on this sun just ….this is just mine.
😁😁😁
My recurrence, two years after RP, went as high as 0.42 before starting Orgovyx. PSMA PET scan showed one single lymph node in the L pelvic. Doc says ADT for 24 months, I say 6 months, and revisit. Radiation to start mid-January 2023. Doc say 40 treatments, I say 5 to 7 treatments. The reason for my position? The PC cells are like crabs in the bay. They will learn to survive on anything. Scavengers. Take away the testosterone, they will find another way to survive, and thrive. Intermittent is certainly one way to stay ahead of them, slow their ability to adapt. I believe 2nd gen such as Nubeqa, is a positive addition to the arsenal. Also, my intention is not to currently find a cure, but to survive in a strong way until a more definitive cure is developed. Immunotherapy, IMHO.
Oh, what I would give for a vacation.
Interesting discussion, My MO is against vacations but I take them when the PSA reads 0.6. But it always comes back, so the beast is there still... waiting.
So what choice do we have? Live it out on ADT?
I have attempted vacations a couple of times since I was diagnosed in May 2020. Both times my PSA tripled in less than a month and I ended the vacations. As much as I detest all of the side effects, I am terrified to let the beast get any progress. Just my take on my own beast. We all have to make decisions for ourselves.
” Tripled in less than a month” ? Dam ! I’d would not vacate the adt .. I’m like you , anything to stomp them pesky man eating suckers . No friend to man .
Thank you for that !!
ADT \"vacation\" terminology questions
Update after a year on vacation
ADT Vacation - Final Update
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Thoughts on vacation and PSA
