Going off vacation.: I am now sixteen... - Advanced Prostate...

Advanced Prostate Cancer

22,278 members27,978 posts

Going off vacation.

lewicki profile image
33 Replies

I am now sixteen months no ADT. As of two weeks ago PSA is < 0.04 T is 10.

Radiologist I still have a prostate) wants to radiate, one oncologist wants to do Chemo and wants to do nothing or high T treatment. Axumin scan three months ago show some more shrinkage from PSMA scan of eighteen months ago. Last ONCO thinks cancer is dying and is unable to replicate itself. Did four trips to Heidelberg AC-225 and LU-177 last trip July 2020. Question is when I should go back on ADT and Iam thinking of Orgovyx ? Thank you

This is my 22nd year in the battle.

Written by
lewicki profile image
lewicki
To view profiles and participate in discussions please or .
Read more about...
33 Replies
GP24 profile image
GP24

In this trial the started ADT again when the PSA value got higher than 10 ng/ml. At 0.04 I would not do anything - except SBRT to the prostate perhaps.

lewicki profile image
lewicki in reply toGP24

Thanks.

GP24 profile image
GP24 in reply tolewicki

I see that I forgot the link to the study:

nejm.org/doi/10.1056/NEJMoa...

lewicki profile image
lewicki in reply toGP24

Thanks

Magnus1964 profile image
Magnus1964

With a PSA that low and nothing significant on scans I would not consider radiation or chemotherapy.

lewicki profile image
lewicki in reply toMagnus1964

Thank you

HopingForTheBest1 profile image
HopingForTheBest1 in reply tolewicki

I agree from the info you posted here why would these doctors now be recommending radiation and chemo? Sounds like you are doing well without needing either treatment.

lewicki profile image
lewicki in reply toHopingForTheBest1

Thanks

All I can say is way to go. You may very have outrun the reaper.

lewicki profile image
lewicki in reply to

LOl

tango65 profile image
tango65

You are still on ADT since your testosterone is 10, at castrate levels.

Since the cancer failed ADT and zytiga treatment , I believe the cancer is metastatic castration resistant.

I do not understand why they want to irradiate the primary tumor with metastatic disease in what I believe is castration resistant cancer.

I will not do anything at this time. Check your PSA and Testosterone frequently every 2 months, just not to get a surprise the testis will wake up and your testosterone go way up.

I am in a similar situation with the testosterone and my MO measures the T every month.

lewicki profile image
lewicki in reply totango65

If you go to those doctors this is what they want to do.

tango65 profile image
tango65 in reply tolewicki

Your testis are not responding to the suspension of lupron or similar and the testosterone remains at castrate levels. If you were really out of ADTyour testosterone should be above 50. I have the same problem and my doctor calls it, free ADT.

lewicki profile image
lewicki in reply totango65

I have been off ADT now for sixteen months. Also, I still have a prostate.

tango65 profile image
tango65 in reply tolewicki

To my knowledge the treatment of the prostate does not prolong life if one has or had more than 3-4 distant metastases. The treatment of the prostate could be done to try to prevent local complications down the road.

lewicki profile image
lewicki in reply totango65

This what I read. I saw a radiologist a month ago and he wants to radiate the whole gland. Not too sure this is for me.

I commend you . Yours is a strong spirit to endure 22 yrs . 👏👏👏😎👍you give hope to me and especially the newbies .. I see no quitter in you .

lewicki profile image
lewicki in reply to

Thanks

E2-Guy profile image
E2-Guy

All I can say is WOW!

Stevecavill profile image
Stevecavill

10 seems very low for no ADT. Can you clarify if that is ng/dL or nmol/L ?

lewicki profile image
lewicki in reply toStevecavill

It is ng/dl. I am not sure what is the difference.

lewicki profile image
lewicki in reply tolewicki

T was < than 10.

Stevecavill profile image
Stevecavill in reply tolewicki

The ranges are very different. “Normal” T in ng/dL is about 300-1000. In nmol/L it’s about 10-30. So 10 would be “normal” in nmol/L but very low in ng/dL. USA uses ng/dL but UK, Australia use nmol/L so sometimes it can be unclear what scale is being used!

slpdvmmd profile image
slpdvmmd

GReat. But my only question is should you get another PSMA/PET or a metabolic PET other than Axumin since it seems to be evolving into a less reliable scan. No easy answer unfortunately from my reading.

lewicki profile image
lewicki in reply toslpdvmmd

Good idea. thanks

lewicki profile image
lewicki in reply toslpdvmmd

Good thoughts. PSMA is hard to get.

timotur profile image
timotur

Congrats on a long 22 year run! Is your T still at castrate level after 16 months off ADT?

lewicki profile image
lewicki in reply totimotur

Yes. It was 10 two weeks ago.

MateoBeach profile image
MateoBeach

If the T is 10 in ng/dL then you are still castrate and do not need any other ADT now. And your undetectable PSA persisting so well after Lu/Ac is just terrific! Chemo now would fit Extinction Dynamics theory but would be considered radical, not SOC. I would have a long discussion with that MO to understand his thinking.

lewicki profile image
lewicki in reply toMateoBeach

Thanh you

j-o-h-n profile image
j-o-h-n

Enjoy it .............

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/28/2022 1:48 PM EST

dhccpa profile image
dhccpa

What was your Gleason score?

lewicki profile image
lewicki in reply todhccpa

Not sure since it was taken many years ago . I recall it to be 3+4 or 4+3.

Not what you're looking for?

You may also like...

ADT Vacation Update/Change of Plan

4 months after beginning ADT vacation I’m at MDA to visit my doctors (PSA =0.2, T=119). My MO was...
6357axbz profile image

ADT Vacation?

To ADT vacation or ADT continuous for life? Obviously, androgens fuels prostate cancer, so why...
DarkEnergy profile image

ADT vacation update

I had a follow up with my MO. I’ve been on an ADT vacation for approximately 7 months. My PSA level...

Rising PSA after being off ADT for 16 months

My hubby’s PSA has risen from .02 to 1.7 in exactly one year. The rise began 16 months after being...

ADT vacation nearing an end

Just an update...recap: been on an ADT vacation since early December 2019 when PSA had been at...
Ron53 profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.