Well, after a year holding PSA <0.02, decided to try ADT vacation on 11/06/2020.
So, PSA readings post vacation: 02/18/2021|<0.02, 05/19/2021|0.09, 06/25/2021|0.18 and 07/22/2021|0.27...
Since still have my prostate, next blood draw will decide to restart Lupron and Zytiga if trend continues.
What would you do?
Maybe get another scan To see where the activity is coming from.
What is the highest T you reached to date?
You gave it a go so for that you should be proud.
The Oncologist didn't want to scan with low PSA, save it for later when rises to certain level. The risk is the insurance company won't approve another scan soon afterwards if PSA rises much more.
Hi Nal
I thought since he still has his prostate his PSA is going to climb as his T rises
May not be bad news and C progression
Scans would confirm
Correct??
I hear you, the May number obviously called for monthly tests. At original diagnosis, PSA 1000+, then with ADT+ it dropped to undetectable. So, we'll probably start treatment next month...
I’m considering a vacation after 2 years of ADT and would welcome any advise
If your PSA has been stable and low, then go for it.
I've had three vacations over the last 7 1/2 years.
You will feel better, IMHO.
The idea is to give your body a rest and to hopefully give ADT a chance to be effective longer.
Agree, just a few years ago vacation or intermittent ADT was never an option. However, I've seen docs opening up to it, there was a few clinical trials that concluded that intermittent ADT was not inferior to continuous ADT.
So, if just a temporary break, why not...
Me too. Three years of ADT. I'm really nervous about cancer roaring back.
Nal, you know I appreciate your advice and take it seriously. My ADT vacation was fully sanctioned by my MO, but we did have a “what if” talk at the time, and he said he was unlikely to restart ADT, if PSA started to rise, until PSA was greater than 2.0. That seemed totally counterintuitive to me, as my logic dictates you get on ADT again as soon as you see upward activity. I still have my prostate, but we completely fried it with radiation, so in my mind, any amount of PSA means there is cancer activity again. Am I missing something?
I look at this situation differently . The most crucial point is that you have fully intact prostate...So some PSA has to rise when normal prostate cells are sprinkled with testosterone. What makes you think that this small amount of PSA is coming from cancer cells? How do you determine if this PSA is coming from awakened normal cells or from cancer cells...I do not know how to determine that. But my logical conclusion is that if one is healthy and has full prostate...up to 2 or 3 ng/ml PSA is likely to come from normal cells. I am lupron free and my PSA has been creeping up very slowly over last 12 months. And now, it has reached 1.2 but I am not getting back on Lupron yet because BALP. PAP and other 10 biomarkers are behaving well.
If size of prostate is 30 cc, up to 3ng/ml PSA can be coming from normal cells...anything higher is suspicious.
Some people use other formula...Nadir PSA + 2.0 as cut off in men with full intact prostate. Remember, PSA alone is not cancer...My Onco said once it touches 4.0..we will start Lupron again.
Read research papers about Intermittent ADT and most allow PSA up to 10 before ending off period...even Maha Hussain's famous trial of non inferior Intermittent ADT uses cut off of PSA 20.
This sounds reasonable. I"ve also heard 3, instead of 4. not much difference.
I am curious to know what was your initial treatment. Did you have any form of radiation treatment?
No. I did not have any surgery or any Radiation. I had 3 inj of Lupron and added ZYtiga..That was first 9 months after diagnosis...Nadir PSA was 0.19. and Nadir T was 1.5. Stopped all treatment . After 5 months when PSA started going up ..Started Bicalutamide. Dutasteride and Tamoxifen....T is in 455-480 range in last 10 months and PSA is very slowly creeped up to 1.2. Lupron free life continues until PSA touches 4.0.
In your case, the healthy prostate cells can still produce some PSA. It is more important that you watch PSA doubling time.
Doubling time does not tell if the PSA is coming from normal prostate cells or from Cancer cells. Do you know any definite method to tell if this PSA is indeed coming from cancer cells. I do not know.
PSA produced by healthy prostate cells should remain at a certain level with some fluctuations. Infection and other factors can lead to increase in PSA. But when you have metastatic prostate cancer (which I suppose you have, otherwise you wouldn't be taking Lupron and Zytiga) short PSADT points finger at cancer cells.
In 2011, when my PSA increased from 2.8 to 3.4 my primary care physician sent me for a biopsy and I was diagnosed with Gleason 3 + 3 prostate cancer that was treated with brachytherapy in June 2011. Unfortunately, my cancer came back twice. First in 2016 as extra-capsular recurrence that was treated with cyberknife. Then in 2018 my cancer spread to multiple abdominal and pelvic lymph nodes detected by PSMA scan and lymph node biopsy. In November 2018, I started ADT with a PSA of 4.8. In 2019/20 I had a nine month break when PSA started to go up with a PSADT less than 2 months.. Now I am on a second break and expect that the same thing will happen again. My MO agreed that we should restart if PSA starts rising rather rapidly. He didn't put any number like 2 or 4. When I started my first break my PSA was 0.06 down from 4.48. I ended my break when my PSA increased from 0.135 to 0.453 over a period of 3 months ( with T around 140).
I wish you good luck and hope that you can continue your break for sometime.
Looks like my break is coming to an end, as PSA is creeping up a bit. My oncologist is not that concern yet, as prostate tissue produces PSA. But, just the fact PSA is rising with my history changes the equation.
Anyway, the call was made to skip Lupron injection and check in a month if PSA is doubling, even at undetectable numbers.
I would restart ADT and abiraterone ASAP given your history.
DE: I would be tracking T in relation to PSA. It could be that your PSA is increasing proportionally to T, and as T levels off, so will your PSA. On the other hand, if T steady and PSA is still increasing, you may need to restart ADT.
This is a concern, 06/25/2021 T = 27, then at 07/22/2021 T = 13.
And yet, PSA climbs, everything points to restart ADT ASAP!
With those T levels it doesn't appear you were really on a vacation. I just stopped Zytiga myself 2 weeks ago and I feel better already. I'm still on ADT until my final Eligard shot wears off. But overall energy levels are better.
My only concern for you is the rising psa with a castrate level of T. Are you transitioning to crpc?
I know, imagine almost asked for Testosterone injection. Obviously my PCa is ultra-hormone sensitive, although my Oncologist is not ruling out the increase to normal prostate tissue recovery. The rationale, aggressive PCa usually roars back at a faster velocity.
Nevertheless, blood draw in 3 weeks...
My understanding is that the science on ADT vacations is inconclusive. I've been on ADT for 3 years. I don't like the side effects but I've accepted them and accepted that my life will never go back to the way it was pre-diagnosis. It's still a good life. I'm never going to stop ADT in case it gives any of the cancer cells an opportunity to start growing again.
Understood, after my research of PCa, I've gotten a sense we don't know what would happen. I will start treatment, even after 9 months of undetectable status. My decision for taking a "vacation" was based on how ADT took my diagnoses from PSA 1000+ to PSA <0.02 in 3 months.
I've seen many PCa patients never get to PSA undetectable status. At diagnosis, my pelvic scan looked like scrambled eggs, tumors distorting the anatomy - screaming when urinating! A month after Lupron injection, massive necrosis, eventually the scar tissue dissolved, PSA <0.02.
Have a friend, got PCa around the same time. scan showed just a few spots. But PSA never got to undetectable. then castrate resistance only after 6 months.
PSA 1000+ to undetectable is an amazing response. I think that bodes well for you. I started at 103 and got down to 0.17 after a year. It started rising very slowly. At 2.5 years it reached 1.0. Oncologist added bicalutamide which has dropped my PSA down to 0.08 over the last 6 months. I think it is good that you are restarting. Let's hope that we all do well over the next few years. Cheers.
My only concern with ADT, and this is very personal, is the possibility of treatment emergent neuroendocrine cancer, which happened to me and is so very much worse than prostate cancer. I also had a dramatic PSA drop from 200+ after initial treatment. Can you ask for Abiraterone only without Lupron? It's something I'd consider trying differently if I could do everything over again.
Just a thought, and heavily influenced by my personal history.
I tried discussing this with my RO and he just didn't get it. Said the chances of NE were very very low. What is a better way to get this point across?
Hi Tom,
I'm sure we'll meet soon neighbor, anyway the idea of just Abiraterone without Lupron sounds cool, still have a full jar of Mylan Abiraterone.
I'm still in meds "vacation", so think I'm doing great with PCa journey, all the best!
The only trial I know of was the "SPARE" trial which involved a small number of older men. The abiraterone only group did better, but because of the small trial it wasn't enough to reach statistical significance. Still an interesting data point that has a bit more power than an individual anecdotal account.
Nal I’m confused. I did a focal Chryo treatment ablating about 40% of my prostate some 11 years ago. I had a remaining 40% of a “healthy” prostate. My PSA post chryo was 3.5 (down from 10). It stayed there for 7 years. Both dr Scholz and my 2nd opinion from my MO at ucla agreed the 3.5 was likely normal PSA from the healthy prostate tissue especially since it held steady. After seven years the PSA drifted up to about 5.5. I did the most advanced imaging available at that time and found three small Mets. Two on my pelvis and one of the ribs. No imaging or MRI showed any trace a prostate cancer on the remaining prostate. I was told that the horse must’ve escaped the barn before the cryo-treatment. I did SBRT on the Mets and chemo and Lupron and and Zytega it for 21 months and went to undetectable. When I did my vacation, again I was told buy two medical oncologist, that my PSA would be expected to drift back up to the same with 3.5 regardless of any additional cancer because of, again, my remaining healthy prostate tissue. So I felt the only way to monitor my vacation time was to do PSMA scans every six months, which I did. All were negative until the last one three months ago which found a very small met on L5 as my PSA had risen to 4.8. I radiated the met, and I’m backOn Lupron Zytega. Never in the 11 years since my Chryo, have any scans or MRIs shown any sign of cancer in the prostate. I tell you all this because I respect you a lot and what I understood does not jive with what I understand you to be saying, that any PSA, even with healthy prostate tissue, means BCR.
Schwah
I simply fail to understand why anybody would stop a treatment that is effective against their aggressive cancer. “Vacation” is a much to nice word to use for that. I am terrified of the concept.
I hear you loud and clear, "Vacation" time may extend the resistance...
I know there are others who will disagree, but I am keeping away from A.D.T The side effects are too numerous and unpleasant. If testosterone was such a problem, why do most people get PCa when they're in their 60s and beyond? Our testosterone is reducing after the age of 40. ADT involves an increase in estrogen which in my view is a bigger problem.
I feel that if doctors keep our T and E balanced we would never have PC. I know a number of men in their 70's and 80's with no PC. They are sexually active.
They didn't even check my testosterone levels before prescribing ADT. I have read that having low testosterone is a contributory factor for aggressive PCa. Additionally I saw a lecture from an Israeli Professor of Urology, who said ADT was potentially dangerous and could cause a stroke, or heart attack. There are many conflicting theories on what is good and what isn't. I guess we all have to make our own decisions on what is best for us.
I believe your knowledge of G8-G10 pca needs enhancing. G9 pca is either 4+5 or 5+4. Within G4, there are several phenotypes. Some more aggressive than others. If you do not get some form of systemic treatment soon, you will most certainly have a poor prognosis and an early death. It's really that simple.
I do wish you the best but shunning ADT is not a wise decision.
Thank you for that. The problem is my oncologist cannot agree with my urologist. The oncologist says I'll survive at least 10 years. My wife's niece is a medical doctor and seems to think I'll be okay . Another relative is a pharmacist and says the same. I have another family friend who is a retired medical doctor, who had cancer, who doesn't seem over concerned with my decision. She says we have to learn to live with it. Who do I believe? I have to die some day. I am now 70, so the day is getting ever closer.
"They didn't even check my testosterone levels before prescribing ADT."
Same here, was first seen by a urologist surgeon, furthermore he tried to convince me RP was the only way to go.
Referred myself to an oncologist at Dana-Farber, very happy with the my pick. The oncologist was not happy about the urologist giving me a 6 month shot of Eligard to start out. The common practice is for a 1 or 3 month shot and closely monitor.
My oncologist cannot agree with my urologist. It's all rather disconcerting.
It seems there is no consensus among MOs as to the correct course, even in a specific clinical conditions like yours (huge PSA and metastatic at Dx). Tall_Allen, what do you say here?
I think that any holiday should come with closer surveillance. The May result would have for me, sent a warning bell. I hope that the side effects of the ADT treatment aren't so bad that you can't just restart. Good luck.
"The vacation" I am also considering asking for vacation. Had prostatectomy January 15th 2019 it had metastasized. Radiation (28) treatment. Have been on Eligard & Zitiga for 2-1/2 years. PSA undetectable on blood draws for 1-1/2 years. Should I insist on a vacation?
I totally agree. The Yankees are S***
Dark Energy, Appears you need to go back on the Lupron & Zitiga.I am considering a vacation,
was it worth it?
Seems most of use will need to return to the drugs.
Best luck,
Thx.
Yes, it was worth it, 9 months vacation did me well. I'm a technical worker and felt my brain cells got recharged. There's info out there about waiting for PSA 2.0 or higher to stop vacation. But, how can we trust cancer...
Been there , done that. 9 month vacation and then PSA roared back. Went back on Bical . and Lupron and went back to undetectable (<.01)in 30 days.
I am not educated in these things enough to give anyone else advice, but I will say I am glad for the vacation! I will also say we will not try that again. Life is good and even with the side effects of ADT I have learned to adjust.
I have many reasons for taking the vacation, one is at my diagnoses with numerous tumors, the initial ADT shot caused massive necrosis, so not shrinkage, instead death.
Get back on the llupronpony dark....tempting fate...my thing is todo adt/erleada till it failz ....thats it...permenent vacation...good vibes whatever the choice.....
I hear you, keeping my PCa hormone sensitive is a strategy.
If the cancer cells are sleeping, then keep them asleep as long as you can. Please stay on the ADT for life
Thank you so much for the concern, I'm trying to prolong the treatment by offsetting resistance. The cancer will mutate and resist treatment, this is my rationale. Once cancer, is forever cancer...
Hello DarkEnergy,Did you have radiation therapy while on ADT? I’m 6 mos on ADT with 25 EBRT with 3x boost SBRT. High risk but not sure contained or intact. Thinking I want off this treatment. Good luck.
No radiation, because of metastasis throughout the pelvic area. In another words, too many spots to zap. So, systematic ADT therapy was the viable option.
Although, since I've responded well, there's been discussion with the oncologist that several suspicious spots can be treated with radiation therapy.
Purpose of ADT Vacation?
Thinking of taking an ADT vacation 
Officially on ADT vacation
ADT Vacation - Final Update
Lupron ( ADT ) vacation
