What Next???: When and What is my next... - Advanced Prostate...

Advanced Prostate Cancer

22,372 members28,135 posts

What Next???

jfoesq profile image
26 Replies

When and What is my next step? Dx 9+ years ago with a few mets, PSA in 40s and Gleason 9. Had 3 vacations are various lengths during first 5 yrs or so, each one shorter than the next. Started with Zytiga early on and was usually on that along with Lupron but not always. Also had a prostatectomy and radiation of left acetablum early on as that's where my largest tumor was located. Been back on Zytiga (along with Lupron for last 2-3 years during which PSA initally rose a bit (a few hundreths of a point from approximately .08 to .13 and then started dropping slowly down to .06 til recently when it went up to .07 and then .10 today. Very minor increases but they do constitute 2 in a row. Any thoughts on how long I should stay on present treatment? And- what should I try next? BTW- Except for a few orthopedic issues, I am otherwise pretty healthy with no other issues such as heart, diabetes.... I appreciate hearing from those who are well educated in the field. Many thanks!!!

Written by
jfoesq profile image
jfoesq
To view profiles and participate in discussions please or .
Read more about...
26 Replies
Tall_Allen profile image
Tall_Allen

Stick with it!

jfoesq profile image
jfoesq in reply toTall_Allen

Tall_Allen I appreciate the advice and as I hope yu know I hold your advice in the highest regard. Any thoughts on WHEN I may need to change and what would come next?

Tall_Allen profile image
Tall_Allen in reply tojfoesq

Yes - when your PSA rises markedly, over 1.0 or 2.0, or if there is met progression on scans.

CountryJoe profile image
CountryJoe in reply toTall_Allen

Dear TA and other great people on this site. I read all of your messages every day but write little. Nevertheless, I am suddenly motivated to chime in. At diagnosis, 3 years ago, I had Gleason score of 9, PSA of 140, with bone mets throughout my body. I am a serious former athlete and, in spite of demandas from my radiologíst to never touch another weight, I have continúed to work out every day (with encouragement from many of you) in an effort to limit the SE of ADT (Casodex and lupron, then just lupron). I have felt quite postive and physically strong throughout the process, although much weaker and with less resitance than before. My most recent PSA is .19, the same as it was 6 months ago. What does this scenario look like to you? I am moving in the direction of riding out the effectiveness of lupron as long as I can, and then taking a vacatión to see what happens. I don't want chemo and, at 76, would love a few good strong years before I die. Quality of life is more important than quantity, so I am thinking that I in 6 months or so, I my be confronting a major decisión in my life. What are your thoughts?

in reply toCountryJoe

I talked to an MO the other day that didn't see a problem with that. He said there were studies that showed that continuous ADT did a little better with regards to overall survival than intermittent ADT but it was not by a huge amount. Like one of those graphs where the upper line is just a little below the lower line. Of course, the devil's in the details.

CountryJoe profile image
CountryJoe in reply to

Thanks Anomalous. That sounds hopefull. I read so many messages on this site about hitting the cáncer hard with all that is available, but in doing so you are hitting yourself hard as well and missing out on quality life while doing so.

j-o-h-n profile image
j-o-h-n in reply toCountryJoe

to CountryJoe.............Unfortunately..... every freaking day we confront major decisions in our lives......As the famous Chinese Philosopher "Confusion" would say. The best way to determine if you've made the right decision is to make sure you didn't make the wrong one....

Good Luck, Good Health Good Humor.

j-o-h-n Saturday 01/08/2022 7:49 PM EST

CountryJoe profile image
CountryJoe in reply toj-o-h-n

Thanks J-o-h-h. That makes a lot of sense.

j-o-h-n profile image
j-o-h-n in reply toCountryJoe

WOW.....Now you got me worrying about you..........Geezamacripe....

Good Luck, Good Health Good Humor.

j-o-h-n Saturday 01/08/2022 10:24 PM EST

Boywonder56 profile image
Boywonder56 in reply toCountryJoe

Add erleada...or another aplutimide

Tall_Allen profile image
Tall_Allen in reply toCountryJoe

Rather than hijack this thread, please start a new thread - you will get many more replies.

CountryJoe profile image
CountryJoe in reply toTall_Allen

What do you mean by "hijack". Im looking for advice and not sure technically how to address myself to the whole group. If you want to fight about it, I'm South Boston Irish and will meet you wherever you want.

Tall_Allen profile image
Tall_Allen in reply toCountryJoe

Sorry you misunderstood. "Hijack" is an internet term for when one diverts a thread away from the concerns of the original poster (OP) who started the thread. I'm trying to be more conscious of this, because I've been guilty of it too. All I'm suggesting to you is that you start a new thread of your own. I and others will respond to you when you do. If you only want my response, send a private message (PM).

j-o-h-n profile image
j-o-h-n in reply toCountryJoe

As the Irishman said to the 2 guys fighting in the street: "Is this a private fight or can anyone join in?"

Good Luck, Good Health Good Humor.

j-o-h-n Sunday 01/09/2022 12:52 PM EST

CountryJoe profile image
CountryJoe in reply toj-o-h-n

😄😄😄😄😄

jfoesq profile image
jfoesq

I recall from previous posts that the magic number that changes things is 2.0 But- I got confused because I also remember people mentioning 3 consecutive increases in PSA and I also got a bit excited for the moment and mistakenly thought .10 was 1.0 Thx for setting things straight for me.

Magnus1964 profile image
Magnus1964

You still doing well. Don't worry about small fluctuations your PSA. Stick with the current treatment and milk it for all it's worth.

jfoesq profile image
jfoesq in reply toMagnus1964

Thx

tango65 profile image
tango65

I will continue with the actual treatment and wait until the PSA is around 0.5 to have a PSMA PET/CT done to see if there is radiological progression of the disease.

jfoesq profile image
jfoesq in reply totango65

Thx

tango65 profile image
tango65 in reply tojfoesq

Something to discuss with your doctors. I wish you the best of luck on your journey.

jfoesq profile image
jfoesq

I asked the question to prepare for my tele-med with my MO on Tuesday.Thx

swwags profile image
swwags in reply tojfoesq

MO's consider more than one thing. PSA and PSA velocity amoung them. Your PSA is rising? Appears to me to be vacillating within a small range.

Is it worth scanning for mets or too low to capture anything?

What is the PSA doubling time that you consider actionable?

Those are questions I would ask my MO if I needed to shake the worry off my back, but as Tall Allen replied, stick with it.

You don't have a PSA doubling time yet.

But you need to sleep at night so ask any and every question that gives you peace of mind.

Fightinghard profile image
Fightinghard

My MO normally uses 2.0 as the trigger to shift treatments. Meanwhile try not to worry. Your numbers are very low.

Break60 profile image
Break60

You’re doing great. Enjoy life!

Poppi07 profile image
Poppi07

My understanding is that they will persist with it until scans show progression. They normally want to get as much out of it as possible. I can’t imagine those increments being significant at this stage. My father is on xtandi and psa had risen for a few months and then dropped again. All the best

Not what you're looking for?

You may also like...

PSA Rising While on Lupron and Zytiga

DX 7 yrs ago at age 54 with several bone mets, PSA in 40s and Gleason 9. Went on Lupron and Zytiga...
jfoesq profile image

Could Use Some Advice As Change May Be Afoot

I was DX 7+ years ago with metPC. I had mets in 2 vertebre, my left acetablum (hip), one lymph node...
jfoesq profile image

Next step..

Gleason 9, s/practice RP. PSA UP to 0.2 8 months later. PSMA showed 4 hot spots all in pelvis....
rfgh20 profile image

What to do next?

At the end of a Lupron break in June my PSA was 1.1 and CT scan showed a new lymph node. I was put...
dac500 profile image

Next Step - Rising PSA

Good morning: I have a question for all you warriors. I was diagnosed with the Beast in 2002 - 4 +...

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.