I am 64 year old restaurant owner that works hard and manages 30 employees.
I am polymetastatic with the usual side effects and my PSA is undetectable.
Anyone know what the science says about taking a break from the medications? Good idea? Bad idea? Is there any real evidence to prove either way?
First time poster however I have been following for a while.
I often take a vacation from the usual ADT medication because I could not tolerate the SE but they do not recomend it because it gives the cancer a chance to grow & become (smart) next time one starts medication again. It comes down to QOL vs SE.
Thank you for your response
Yiasou Patrioti,
Below are the results of taking an ADT vacation or not.
j-o-h-n
6 months ago
**************************************************************************************************** Notice: THIS SURVEY IS OFFICIALLY OVER. ______________________________________________________________________________________________________________
NOVEMBER 5, 2023.
A giant thank you to all of the H.U. members who have participated in the survey.
RESULTS:
86 No - VALID responses (55.5%)
69 Yes - VALID responses (44.5%)
155 Total VALID responses
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 11/05/2023 11:17 PM EST
Good Luck, Good Health and Good Humor.
j-o-h-n
Efharisto Patrioti
Here's what the science says:
prostatecancer.news/2023/04...
Tall_Allen I’ve been following you since this journey started. I was hoping you’d respond so thank you. There is a difference between undetectable psa and >4 psa as in the study. Is this really the same comparison? What’s your take on this?
Sorry, I don't follow. What study are you talking about?
Excellent, informative article. Thanks TA
I was diagnosed in early 2020 as Gleason 8/9, high risk localised PCA, N1M0, PSA at diagnosis: 83. Received a PSMA scan (no mets other than lymph glands in pelvis noted). Treated with ADT (Lupron), Aberaterone and IMRT (20 sessions, 63Gy) at Royal Marsden, London in December 2020. Completed treatment in December 2021. Nadir after treatment was 0.07. Testosterone now normal for my age (67). Fit & well. Everything fully functional. Latest PSA in May 2024 is 0.56 (vs. 0.5 twelve months ago). Ongoing surveillance every 6 months.
finished treatment rt/ht in 2016 6 monthly psa checks now 0.04 asked oncologist regarding trt but no because I am high risk t3b no mo,my testosterone has never recovered and now I have got severe osteoporosis, I have just had my second infusion of zoledronic acid, but it's not good without testosterone increased risk of heart disease, diabetes and stroke etc,but what can you do except just keep going.
I would not have a drug Holliday. I am reasonably fine with treatment side effects. Maybe you could switch to Apalutamide and stop your ADT. It is only my idea and not based any scientific research.
I'm not a scientist or medical expert. I've been on ADT for 6 years and I have no intention of stopping it. I don't want to give the cancer cells any opportunity to start growing again. I have just adapted my lifestyle to deal with the ADT side effects.
Well, as usual, there is no one "answer..."
It in part depends on your clinical history, attached is mine. On that fateful day, 23 Jan 2014, my urologist told me I had PCa, and a pretty damned aggressive one. My clinical history bears him out, GS, GG, PSADT, PSAV, time to BCR...
And yet, here I am, 10+ years later.
Why, not sure.
Why has my PCa not become castrate resistant, spread to the bones or organs, not sure.
What do I know...I've been aggressive with my treatment, well, except when my radiologist and oncologist talked me out of adding WPLN and six months ADT to my SRT, epic failure.
In late October 2016, with SRT having failed (see above), my PSA rapidly rising, I sought a second opinion from a Director of Urology at a NCCN Center near me who told me he would only put me on mono-therapy, ADT vice triplet therapy, did not even want to discuss imaging with C11 Choline or the PSMA PETs in CTs. My own urologist, great surgeon, was also of the same mindset, start ADT..at least he was willing to humor me when I said I'm not sure, I need to explore my options.
I dismissed the NCCN Urology Director, intrigued by the idea of breaking the paradigm of sequential and progressive mono-therapies, each destined to fail, the end result, death by PCa, not with it. Instead, combine treatments, using imaging, bring the treatments forward in the early stages of the PCa to "overwhelm" it.
When I did triplet therapy starting in Jan 17, Kwon's original plan was 24 months ADT. When I raised the possibility of stopping the ADT at 18 months based on various CTs (they were all over the map, 18, 24, 36...),he was ok stopping at 18 given my response to the treatment.
This last go round, when my PCa came back after a 4-1/2 year hiatus, my radiologist (same one who talked me out of WPLN in 2016) asked what I wanted to do. I said SBRT and short term ADT, Orgovyx for all the reasons - faster castration, higher sustained castration, lower CV SE profile and faster recovery when coming off treatment. My oncologist, new to my medical team initially suggested SBRT and 24 months of Orgovyx + Xtandi, said it could be potentially curative. I said let me ponder about that since I am in the camp that thinks advanced PCa is not curable, rather manageable. He said, ok, let's do this, 12 months Orgovyx, hold the Xtandi if Orgovyx doesn't drop the PSA to undetectable in the first three months (it did) and then at 12 months, let's discuss coming off treatment or continuing. We met on 4 April 24, radiologist was fine coming off treatment. She told me that during the review boards, oncologists were all over the map about how long each patient should be on ADT, including my case. My oncologist had no specific data about increased PFS, RPFS, OS; while I had no specific data abou castrate resistance though I felt that was the greater risk of another 6-12 months. My oncologist supported coming off treatment with the proviso I have labs and consults every three months for the first year and then we go from there. I said, too easy. He then said when it comes back (not if) he was going to add the ARI from the start. Again, too easy I said.
Long response to your question but mine is a history of an aggressive PCa and trying to apply the science such as the NCCN and AUA guidelines to my clinical data, the art of medicine.
I think if you and your medical team decide to come off treatment, the key is "active surveillance," with decision criteria about when to resume treatment and what informs that decision. In my case that is three or more consecutive PSA increases, imaging with Plarify when the PSA hits .4 or higher (given my PSADT, I can reasonably image at lower PSAs with expectations that the Plarify will find it) and then informed by clinical data, decide when, with what and for how long.
As I say, study of one.
Let us know of your decision and subsequent "happenings."
Kevin
what is Plarify?
Bad spelling on my part - pylarify.com/patient/about?...
My radiation oncologist recommends coming off ADT 12 months after radiation if PSA is undetectable. My regular oncologist recommends 2 years as that is what has been studied.
I've taken 4 ADT holidays over about 6 1/2 years. The last one was most likely my last as it now appears I'm castrate resistant. I found that as soon as my T level started to rise my PSA started to rise and scans showed the cancer was again active but no additional spread. My longest holiday was about a year and the shortest (the last one) was only 4 months. My T level recovered very quickly during the last holiday.
My MO was supportive of this. I took them to get some relief from the SE's. My MO did say that the science showed that the intermittent approach did slightly reduce life expectancy but not dramatically. And given my particular situation he felt that the increased QOL, albeit temporary, it was worth trying them. I tried one and it worked out okay and I had a nice respite from the SE's so I kept taking them until I can no longer responsibly take them. I have no regrets.
What does your MO say about it? For some patients it's obvious that a holiday would not be a good idea but for others it's a possibility. Some patients and MO's are more risk adverse than others. Everybody's particular situation is different as is the potential risk/reward so there is no one right answer. If you're one of those patients that your MO feels that a holiday is at least acceptable to try it really comes down to your willingness to accept the risk in hope of getting the reward.
I am on a vacation now. As with you, my peak PSA was 125, and Relogolix and Darolutemide brought it down to .02. Total medicated time was ten months, and my MO said ok. It’s been three months and my testosterone came roaring back to about 550, and PSA climbed too. Now at 4, BUT just had a PSMA pet scan last week and my MO was VERY pleased that most of my Mets are gone and “prostate much improved”. Have one hotspot of concern remaining.
I’ve done all the holistic stuff including HIIT swimming, weights, vegetarian, no sugar, etc, and m sure that’s helping. Will now add keto low carsba do 6/18 daily fasting schedule and see if I can knock out the remaining one.
My MO said “let’s give it three months”
Bad idea. Vacation is advisable only if the side effects are totally onerous. Having said that, I temporarily stopped taking Lupron after 2 consecutive years of no tumors on scans. (I still take Erleada every day.) I have blood tests every 3 months which should allow us to adjust if something bad starts happening.
My testosterone has come from 7 to 100 and I feel marginally better. I would love it to have the old me back with the energy and so on but no way do I want to give the cancer an opportunity to start again.
Others will give you more details, this is just anecdotal.
Steve, the scans you were having, were they just bone and ct or PSMA ? My interest is my plan to stop ADT after 5 years of Eligard and Erleada and continue Erleada as a mono therapy. I have been NED for 54 mths as per bone and ct scans only.
I’ve been on Xtandi and monthly Degerelix injections for several years. I refuse to take a vacation. PSA has been less than 0.01 and I refuse to rock the boat.
The Greeks have a word for your (our) situation/decisions..... It's Po Po (πο-πό).....
Good Luck, Good Health and Good Humor.
j-o-h-n
KΑΛΗ ΤΥΧΗ,ΚΑΛΗ ΥΓΕΙΑ ΚΑΙ ΚΑΛΟ ΧΙΟΥΜΟΡ
I am 73 and been on Abiraterone and Prostap for 3 1/2 years. It was making my QoL awful, with a lot of pain, fatigue, etc. The pain killers I needed just made it worse.
With my Oncologist 'reluctant' agreement I have stopped Abiraterone for the last 4 weeks and I do feel better, clearer etc and have reduced much of the pain. I haven't had blood test since so don't know if PSA is affected, although in my case it has always been a very poor guide.
Only my experience so far, but as with life it is a balance between QoL and medication.
Best wishes
seek opinion about vacation from ADT
on vacation from Zytiga; getting arthritis in hands
Vacation from Lupron/Zytiga - Temporary or Permanent!
vacation away from treatment 
Vacation from ADT
