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6 years now and PSA <0.01 is it time for a vacation?

Vasili profile image
17 Replies

Hello, after chemotherapy, STRT of the prostate, I have been taking Eligard hormone therapy for 6 years now and PSA <0.01 is it time for a vacation?

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Vasili profile image
Vasili
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17 Replies
Tall_Allen profile image
Tall_Allen

Are you suffering because of the Eligard?

Vasili profile image
Vasili in reply toTall_Allen

малко може би

Vasili profile image
Vasili in reply toTall_Allen

if i stop eligard and testosterone does rise

Vasili profile image
Vasili

Т не се повишава

smroush profile image
smroush

I stopped Lupron and Casodex in October 2014 after being on them for 27 months; my PSA was < 0.1. I have been off them ever since and I believe the highest my PSA ever went was 0.2; it is currently < 0.1. Of course your mileage may vary... I also adopted a vegan diet and exercise heavily, both of which I suspect helped some.

jackwfrench profile image
jackwfrench in reply tosmroush

Wow, in 2014 did you and your MO just decide to try the vacation, was a scan part of the decision? Are you strict vegan with no alcohol? thx

smroush profile image
smroush in reply tojackwfrench

I do not recall any scan at the time of the decision to stop the meds. I am pretty strictly vegan; the main exceptions are that I will get sea food if I am at a restaurant which does not have a vegan option and an occasional baked good made with eggs or milk. I do have about 3 beers a week.

Vasili profile image
Vasili in reply tojackwfrench

да ти е м м

900312611 profile image
900312611 in reply toVasili

curious: google search of да ти е м м translation is: do you like it...what are you trying to say?

Yzinger profile image
Yzinger in reply tosmroush

great news for you!! Were you PCa?..i mean what was your Gleason and any mets at DX?

smroush profile image
smroush in reply toYzinger

I was a Gleason 9 (5 + 4) with regional metastases to pelvic lymph nodes and bladder. I had kidney stents in for over 8 months due to a urinary blockage due to the bladder tumor. Treatments were radiation therapy (70 grays) plus the Lupron and Casodex for 27 months. PSA was fairly low, about 10 I think, and declined to 0.1 about a month after radiation therapy.

TwilightZone profile image
TwilightZone

Wish I was in your position. If I was, would not give protate cancer any chance to sneak-up behind me...........no &%$@!! way.

Hawk56 profile image
Hawk56

I posted this previously:

Fellow layman and study of one so, for what it's worth. Here's my clinical history.

In Jan 17 I started triplet therapy. Dr. Kwon and I had agreed to six cycles of taxotere, radiation to the entire PLN system and 24 months of ADT, Lupron, 3 month shots. He also discussed adding Xtandi given my PSADT, time to BCR, GS...

As treatment progressed, Dr. Kwon "marveled" at my response, held off on the Xtandi and when I asked about 18 versus 24 months of ADT, he was fine with 18, so, that's what we did.

I was off treatment for 4-1/2 years after triplet therapy. I will never know if the extra six months would have changed that, with each of us, there is no control study, just the decisions we make and the results. I was experiencing hot flashes, fatigue and muscle and joint stiffness. Were those side affects impeding living, no, but they sucked! My T recovered, 135, 400+, 600+ and I felt it. I did not do TRT, I do exercise daily, active, did that play a role, maybe. Interesting, my T when I began was just under 300.

This year, PSA started increasing, our decision criteria was met, three or more consecutive increases, PSA between .5-1.0, so, we imaged with PLarify. It showed a single PLN though we know likely other sites too small to be seen. My oncologist initially talked about 24 months of Xtandi and Orgovyx along with the SBRT my radiologist recommended as being "curative." I looked at him and said, I am not sure curative is in my future, management of "chronic" PCa may be what we should think about in our decision. He thought about that and said, ok, let's do the Orgovyx for 12 months and SBRT, labs and consult every three months to decide whether we need to add Xtandi.

When the PSA dropped within the first six weeks from .77 to .13 then at three months to <.04, like Dr. Kwon, he saw no reason to add the Xtandi as he weighed side effects (we did go over the Embarq trial). We do labs in late January, if results stay the same, we'll stay the course until April which will be the 12 month point. If labs are the same we plan to come off treatment and actively monitor, labs and consults every three months. Side effects, from radiation, none, from Orgovyx, the usual, hot flashed, fatigue, muscle and joint stiffness, genitalia shrinkage., much like Lupron though maybe not as severe.

Is this the right decision...I am comfortable with it, radiologist and oncologist both recommend it. I think the key is we have decision criteria to stop, continue, change and if we stop, active monitoring and decision criteria to start..

I will say, life off treatment was pretty damn good, life on treatment, ok...coming up in January on my 10 year anniversary of diagnosis. I remember well the words of my urologist reviewing the TRUS biopsy results, "Kevin, that's a pretty aggressive cancer...!"

Clinical History
jackwfrench profile image
jackwfrench in reply toHawk56

I know you did not do curative SBRT - but looking back what are your thoughts about it in general? I am on ADT + abi and thinking I should consider it for additional shrinkage or destruction of my two major spots. Thx

Hawk56 profile image
Hawk56 in reply tojackwfrench

I am not an advocate of mono therapy though there may be clinical data in some that advocates for that. At this point I would not do radiation alone understanding what I do about micro metastatic disease. There could be point in the future where it may be considered as palliative care given age, co-morbidities...this is not that time.

I do believe that when the clinical data supports it, radiation is a definite option. Think smart versus dumb bombs. We know radiation kills...ADT suppresses...at least that's my layman's understanding . So, if your imaging shows the location(s), why not use radiation on those? My SBRT was five treatments every other day, 40 Gya total, approximately 8 Gya each time.

I've gotten up on that table 69 times over the course of my three treatments involving radiation, same radiologist. Zero side affects, testimony to the advances in treatment planning and delivery. When my radiologist and I met in April to discuss the Plarify scan results we said if this were 2016 we would not be having this conversation as imaging then would not have identified the lone PLN. I have two sets of tattoos from the SRT and PLN treatments. This time around when they did the simulation I was expecting a third, she said no, imaging capability while delivering the radiation combined with the software to adjust the delivery had reached a point where the tattoos were not needed.

It's not that I don't believe in curative treatments but, the surgery, SRT and triplet therapy were all curative attempts, we see how that worked!

So, I'm into management, never let it get out of control. Now, some will say exactly, that's why you do continuous ADT...well, yeah, but we know that by and large continuous treatments fail, then, it's a race to the finish line with more continuous treatments. Could I handle continuous treatments, yes, why...when my approach is working and providing enjoyable time off treatment!,

It may be that my treatment journey in which I've made the decisions with input and support from my medical team, the homework and balancing quality and quantity of life does not change a key outcome, overall survival. We'll never know, will we, I can't clone myself, have that clone go through other treatments and compare.

I think we can agree 10 years later that my approach has been curative in the treatments and resulted in managing my PCa with more time off than on treatment.

Each time off treatment has brought advances based on medical research in imaging and treatments that support my approach .

I also believe when off treatment that you see your medical team regularly for consults, labs...have decision criteria for imaging and treatment based on clinical data.

I've done a lot of living in those ten years, both on and off treatment.

Kevin

TEBozo profile image
TEBozo

He'll, yes.

RMontana profile image
RMontana

Take a look at this article; you may want to consider intermittent ADT going forward...if my PSA comes back I will not go back on full time ADT again but will do IADT. There are some counterindications in this podcast regarding TET therapy and its impacts, especially in the 1st year of ADT treatment. Its important to see the results of the one study posted but the implications from this presentation are clear; higher TET is not protective during the 1st year of ADT…afterwards it appears that intermittent treatment with its introduction of TET, does not appear to affect OS and can improve QOL. See this part of the podcast;

MIN 16:40 – Goal for low TET level during initial 1st year of ADT treatment. Study of 626 patients. Patients w fully suppressed TET below 20 ng/dL in 1st year were 2 times (HR =1.90) less likely to develop CRPC (castrate resistant PCa) than those with TET higher than 50 ng/dL. P=0.015; 1.5% chance results are wrong. They also had 10 year Median time to progression! Conclusion; initial high TET is not protective over CRPC outcomes. Rick

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