Latest PSA 0.019: I was diagnosed last... - Advanced Prostate...

Advanced Prostate Cancer

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Latest PSA 0.019

dexy1234 profile image
27 Replies

I was diagnosed last April, 2020 with locally advanced PC. Gleason 8. Stage: T3, N1, M0. Presenting PSA: 93. Had a PSMA/PET: no sign of mets other than three small pelvic LN's. Treatment with ADT: Lupron, Zytiga, Prednisone in June 2020 followed by IMRT to prostate and pelvic nodes. PSA is now 0.019 six months after RT. How long do I need to remain on ADT/Zytiga?

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dexy1234
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27 Replies
Dachshundlove profile image
Dachshundlove

Hi dexy1234:

The research supports roughly 2 years of ADT with Zytiga in cases of high risk cancer such as Gleason 8 locally advanced .

Great response to treatment—Hopefully the Lupron & Zytiga will clean up any micro metastatic disease and you will get a good durable remission. Good health to you!

dexy1234 profile image
dexy1234 in reply to Dachshundlove

Thank you

Magnus1964 profile image
Magnus1964

Stay on it till your PSA starts to rise. Hopefully that will be a long long time.

treedown profile image
treedown

Sounds like we had a similiar path of disease and treatment with curative intent. I finished RT March 2020 and if all things remains as they are today I will stop meds in September. If this is the case it will be approx 2 years from starting Lupron. I see very little difference in our treatment plans so curious what your doctor told you as mine told me before I started it would be 2 years.

dexy1234 profile image
dexy1234 in reply to treedown

He said 2 years but I asked him if 18 months is non-inferior. He then responded that 18 months would be sufficient, contingent on the PSA response.

in reply to dexy1234

My oncologist said the same thing, and I stopped at 18 months. I assumed it was the zytiga/prednisone that was grinding me down at the time. I do believe after I stopped them my muscle "performance" improved, with much less cramping during exercise. But you never know; I'd stick it out to 2 years if you can.

dexy1234 profile image
dexy1234 in reply to treedown

PS My treating oncologist is at Royal Marsden, London

Kinggip2 profile image
Kinggip2 in reply to treedown

My husband was Gleason 8 psa 49 w one involved pelvic lymph node. He has been on adt, abiraterone and prednisone with lupron for almost two years. 45 rounds of radiation feb 2020. He’s currently non detectable. Oncologist still saying three years. I could have sworn initially he said two years. But his fatigue is getting worse. He’s thinking maybe he should switch the zytiga from morning til night. He currently takes 4 250 mg abiraterone in am, one prednisone at lunch and one before bed. Is that the order you do?

treedown profile image
treedown in reply to Kinggip2

I am on 750 my zytiga once a day and 5mg prednisone. I take my zytiga about 5 am and prednisone when I get up. Same treatment I from what I can see so I wonder the reason for 3. That said I could be back on ADT in no time as my seco d opinion Dr said there's no chance of cure and I will be on it for life. Only time will tell. I have tolerated the drugs well.

barrybayarea profile image
barrybayarea in reply to Kinggip2

Kinggip2 Are you sure that your husband needs to take 2 prednisone tablets, most of us take one 5 mg tablet per day. But if his doc said 2 then it must be OK. I was told to take the prednisone as early in the day as possible, latest by 2 pm so that it does not interfere with sleep. I take it the first thing in the morning along with Orgovyx (alternate to Lupron), I take the Zytiga at bedtime, 2-hours after dinner. Also, my fatigue is better since I started some activity, for me that is golf ;) Best of luck.

treedown profile image
treedown

I see you had RT like 9 or 10 months after starting ADT? I was like 3. Your also in England so that may explain some differences. Sounds like you will be off the meds soon as well. Best of luck for a long remission.

dexy1234 profile image
dexy1234 in reply to treedown

Thank you and the same for you

timotur profile image
timotur

I did 18 months ADT for T3N1MO starting two months before radiation (HDR-BT).

dexy1234 profile image
dexy1234 in reply to timotur

What was your Gleason?

timotur profile image
timotur in reply to dexy1234

I was G7 (3+4), PSA 29, +SV, and one mesorectal LN.

dexy1234 profile image
dexy1234 in reply to timotur

Sorry! I noticed it's in your profile. How are you getting on now?

timotur profile image
timotur in reply to dexy1234

Doing very well, other than collateral damage from ADT (bone loss, genital shrinkage), feel pretty good. Only odd thing is Estradiol is high, 2x normal at 79, nine months after stopping ADT, but has T recovered to 700 and that feels good.

Tall_Allen profile image
Tall_Allen

I hope that when you write "IMRT to prostate and pelvic nodes," you mean that ALL your pelvic lymph nodes were treated and not just the ones that were PSMA+. Two to three years of continuous ADT are required- it may be less with Zytiga, but that remains to be seen.

dexy1234 profile image
dexy1234 in reply to Tall_Allen

Yes that's correct TA. Thanks for the advice

2 years....you are on a curative track. If you end up not being cured then you resume lifetime ADT.

Great results in Psa dexy! Now to keep it there and the pc in hiding forever! It is a marathon to out pace pc . Stay strong and workout often if you can . It’s the only thing ,that helps everything . I’ve been undetech over six years . Constant adt plus an orch in 2017 .I have 3T and The problem is no ….. T ,we get in touch with our feminine side 😳Hang in there . 🏋🏽‍♂️👏👏

What about a year instead of 18 months. Will it really make a difference?

Fightinghard profile image
Fightinghard

Good luck. Its very good that the treatments might have stopped the pca. The beast is very hard to kill so stay alert and keep tracking your psa long term.

Billybob2 profile image
Billybob2

My dx same as u, was told 24 months, msybe 4 life.

Lakeborne profile image
Lakeborne

I was on Eligard, Zytiga with Pred. for two years, and have been on a medicine vacation for the last two years. Current PSA is .02. Please see my profile for additional info. Am hopeful for a long remission.

mike__c profile image
mike__c

I have a similar path, the main difference being that my LNs were discovered with my prostatectomy. Followed with IMRT and Elligard+Zytiga. The MO I'm seeing at OHSU in Portland, OR is suggesting two years of ADT assuming PSA is undetectable. 5 months in; so far so good.

westof profile image
westof

Hmm...

Here is a portion of a recent post I made:

"After HDR Brachy and 25 days of IMRT (2019), RO does a brief DRE, looks me in the eye and states " you are not going to die from APC"! (2/20)

GREAT!! No more Lupron and I can taper off Z and P!!

Well, MO reminds me that I still meet 2/3 of the Stampede Trial criteria (G9 and PSA>20. My high was 28) and he wants me to continue ADT until the end of 1/21.

OK, since my SE's were relatively minor (even though I'm 72), I agreed."

Last Lupron was 7/20 and I tapered off Z&P in January.

Testosterone has gone from 0 to 115 and I do feel stronger.

I have lost 7 lbs (initially concerned), but as Tall Allen explained: "You are wondering why you lost 7 lbs after ending ADT? That is common as testosterone returns and metabolism increases." My MO agreed!

last month I had bone and CT scans (no evidence of any mets. Initial scans also indicated the same).

Also had a battery of NEW blood tests (Chromogranin A), good luck researching that one! TA? Also ultrasensitive PSA <0.02 ng/mL ( I always thought that test was meant for RP patients)

Met with MO on Friday and gave me a clean bill. However, he also added, "I'll see you in 3 months"...😒

Hmm...

Best

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