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Advanced Prostate Cancer

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Should I be worried?

CountryJoe profile image
41 Replies

Hello my brothers and sisters. After 3 years of ADT (Zoladex) and with a stable PSA of .13, my MO put me on vacation (to my great joy) I June, 2022. It has now been 5 months. Three months into my vacatión I could begin to feel the changes with greater strength, muscle mass and hope, although the hot flashes have continúed. During that period my PSA has been:. 136 - July

. 15 - Aug

. 132 - Sept.

. 189 - Oct.

.367 - Nov.

With the leaps in Oct. and doubling in Nov., I am begining to worry and would love the advice of the amazing people on this site. Am I in trouble? Do I need to think about going back on ADT? Is it time to try Estradiol patch es or Estro gel?

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CountryJoe
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41 Replies
Tall_Allen profile image
Tall_Allen

At what PSA do you feel it will be time to end your ADT vacation? There are no rules - it's up to you.

CountryJoe profile image
CountryJoe in reply to Tall_Allen

Thanks for getting back so quickly TA. You have asked the key question. The MO had said a PSA of 6, since I still have my prostate. I had hoped for at least a year of vacatión before returning to ADT to knock PSA back down to . 13, and continúe with this plan for several years. I have no veins, so I don't want chemo.

ARIES29 profile image
ARIES29 in reply to CountryJoe

Recently I finished my vacation when the PSA went from.6 to 2.6 after 6 months on my MO advice. I still have a prostrate & obviously the cancer as well.

CountryJoe profile image
CountryJoe in reply to ARIES29

Thanks so much for getting back to me on this, ARIES29. That's very helpful. Be well, my brother.

Radars profile image
Radars in reply to ARIES29

I have locally advanced prostate cancer finished treatment 2016 I am on intermittent ht 6 monthly checkups psa 0.05 but my testosterone has not recovered and now I have been diagnosed with osteoporosis with low body weight, now waiting for treatment.

ARIES29 profile image
ARIES29 in reply to Radars

Lack of T will do that as our male bodies run on T. Remove it & life changes for the worse but at least we are alive.

gsun profile image
gsun in reply to ARIES29

What is your PSA now? How long have you been back on ADT?

ARIES29 profile image
ARIES29 in reply to gsun

I have been back on firmagon ADT for three months now & have blood test next week so will update when I know the new PSA level. The monthly jabs in the stomach are becoming unbearable so will try Zoladex next.

CountryJoe profile image
CountryJoe in reply to ARIES29

Please keep us updated. I was on Zoladex before my vacatión and the SE were very tolerable. I just wanted my strength again. Best of luck to you my brother.

ARIES29 profile image
ARIES29 in reply to CountryJoe

My MO said Zoladex is easier on the heart than Firmagon so the SE have to be better.

Seasid profile image
Seasid in reply to ARIES29

Firmagon is easier on the heart as far as I know, but ask him, your MO for the source of his information so you could review it for yourself.

Seasid profile image
Seasid in reply to ARIES29

Find someone who can give you a proper injections of Degarelix. It makes a huge difference.

Last time someone else injected Firmagon and I didn't have any problems after the injection.

Last time it was a male nurse.

ARIES29 profile image
ARIES29 in reply to Seasid

Good point Seasid, I get a different female nurse every time & that is every month so with zoladex it is every 3 months.

RMontana profile image
RMontana

Have you had a PSMA PET to look for MET? At your PSA levels you are pushing 60% plus Sensitivity...wondering. Otherwise if it were me and the numbers are going up that means the PCa is growing...somewhere...the question is where? TNX

dorke profile image
dorke

Wouldn't say worried but call for action.

Was in a similar situation.

During ADT vacation PSA raised from undetectable to 0.3.

Got a PET-CT/PSMA which detected a met in a rib.

So my suggestion would be to get a scan done.

Best of luck

E2-Guy profile image
E2-Guy

I would certainly give the patches or the gel a try before going back on the jabs.

Keniszen profile image
Keniszen in reply to E2-Guy

can you tell me more about patches or gels ? Does it take testosterone to below 20?

I may be headed to ADT, and have not seen info on patches .

E2-Guy profile image
E2-Guy in reply to Keniszen

It should be as effective as any of the LHRH ADT drugs without the side effects. My T 'usually' doesn't go down to castrate levels; however, my PSAs have been undetectable for almost 4 years now.

CountryJoe profile image
CountryJoe in reply to E2-Guy

Been thinking about you, Ron. Definitely want to try patch or gel. Going to the States for Xmas and will try to find this stuff.

E2-Guy profile image
E2-Guy in reply to CountryJoe

You may be able to buy it online? I think it will difficult to find OTC?

Dont08759 profile image
Dont08759

I went on my vacation last month. After 2 years of Lupron, My PSA has been 0.03 and T=3, I still have my prostate. My oncologist said my target PSA is 3.5 as my PSA at the start of Lupron was 7.1. I’m scheduled to have blood tested every 90 days.

Teufelshunde profile image
Teufelshunde

Maybe try some BROQ (sulforaphane) per this study for a couple months? This involved after RALP PSA progression so not sure if applies to those still with prostate.

pubmed.ncbi.nlm.nih.gov/259...

CountryJoe profile image
CountryJoe in reply to Teufelshunde

Thanks so much for getting back.

I would not worry at all, sounds like you’re still on the good side of the fence. I remember asking the same question when I went on a Zytiga and later on a lupron vacation. I’m now CR, psa at 7 (wth prostate) I’m asymptomatic, T is still castrate only using estradiol and 1000mg Zytiga.

CountryJoe profile image
CountryJoe in reply to No_stone_unturned

Thanks so much for this postive message, No_stone_unturned, I needed that. I live in El Salvador, and am in the public health system. Not too many options for treatment, just what ever the onc says. Will soon travel to the US for Xmas. Seeking a way to get access to estradiol paches or estrogel, following the bold path of Ron Ron. I wish you the best my brother.

NecessarilySo profile image
NecessarilySo

I took a four year vacation but would not recommend it. My PSA reached 35. Since then I have taken Lupron continuously every three months and PSA is at <0.1. Your doubling time is worrisomely fast.

CountryJoe profile image
CountryJoe in reply to NecessarilySo

Thank you necessarilySo. The doubling time is what worried me. Im going to do another test before the end of December to see if this is a pattern. That's amazing that you took a 4 year vacatión and currently have a PSA of. 1. Why do you say you would not recomendó this????

Radars profile image
Radars in reply to CountryJoe

I have been on vacation since 2016 since finishing zoladex psa 0.05.testosterone not recovered.

CountryJoe profile image
CountryJoe in reply to Radars

That's what Im looking for. Thanks Radars.

NecessarilySo profile image
NecessarilySo in reply to CountryJoe

The vacation was okay, but during the period, cancer cells spread to a few spots and I was fortunate to stop the vacation in time to reverse the problem. The Lupron with Xtandi brought my PSA down fairly quickly and the sore lymph nodes lost soreness in a couple of months. Others might not be so lucky.

CountryJoe profile image
CountryJoe in reply to NecessarilySo

Thank you So

Doseydoe profile image
Doseydoe

I went on a vacation from Eligard and 12 months later my Testosterone began to rise but unfortunately, so did my PSA. My Oncologist prescribed Bicalutamide and this is keeping my PSA low while allowing my T to climb. We have now added Tamoxifen to counter my rising Estrogen. This strategy is working for me and I feel pretty good. Perhaps this could be an option for you. Keep strong, DD 😎

CountryJoe profile image
CountryJoe in reply to Doseydoe

Thanks so much, Doseydoe. This is sooo heartening. So are you taking estrogen gel or patch?

Doseydoe profile image
Doseydoe

I'm not taking any estrogen. My rising estrogen level is caused by the bicalutamide.

treedown profile image
treedown

I have been off ADT for over a year and expect my next test to hit over 2.0 which will signify a BCR after initial treatment. At that point I will get scans and most likely go back on ADT. I was on Lupron taken alternately in left or right ass cheek every 3 months. Other than a little discomfort that day and night no other issues from the shots.I guess I don't understand how vacations will work going forward. TA says it's up to us but that doesn't clarify it for me. I hope at this point I have the chance to figure it all out.

CountryJoe profile image
CountryJoe in reply to treedown

Thanks Treedown. We seem to be in a similar situación. What does BCR mean?

treedown profile image
treedown in reply to CountryJoe

BioChemical Relapse

CountryJoe profile image
CountryJoe in reply to treedown

Thanks Treedown (great name 😊). There are a number of respected "oldtimers" on this site who consider vacations dangerous. I'm an adventurer and need to know how agressive my cáncer is and how it will react to curtailing ADT. I just need to know that, although I am aware that this path might kill me 😊. In 5 months of vacatión, my PSA has gone from .13 to . 36. I would also love to be at 2 after a year.

treedown profile image
treedown in reply to CountryJoe

My doubling time was 1.3 months so I am hoping that stays the same or slows down as opposed to the third option. I am also hoping to get an idea of how aggressive mine is as well. I have been on the forum long enough that even within the status of aggressive there's different levels.

CountryJoe profile image
CountryJoe in reply to treedown

Good luck to us all, brother!!!

treedown profile image
treedown in reply to CountryJoe

Amen to that!

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