Follow up on Salvage RT : Hello - I m... - Advanced Prostate...

Advanced Prostate Cancer

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Follow up on Salvage RT

ken12491 profile image

Hello - I m new here - any advice/thoughts would be appreciated - age 67, diagnosed at 65. Pretty healthy guy, with this exception.

RP 2/17 in NYC - PSA after that was detectable, so off to Sloan - thank god they are close.

GS - 9 ( regional )

All scans clean

Started salvage radiation treatment - 5/2017 - PSA 1.23 in NYC

Also Lupron - 1 shot 5/2/2015

T Levels at the start was 503 ( before Lupron )

After 1 month on Lupron, T level was 21 ( WOW - what a hit ) - stayed at the level for the year while on that medication.

40 RT ( IMRT ) treatments, that began on 9/18 ( at Sloan )

1 month later ( June 2017 ) PSA was undetectable and stayed there for 1 yr

Just had 1st follow up since 5/2018 ( 6 months from the last PSA and T levels tests )

NOW 12/17/2018

T - Level now is - 421 !!!

PSA is 0.19

Thoughts, comments would be appreciated.

I would hate ( but would ) take another hit on Lupron or Casodex, but would that be overtreatment - I can't drive myself crazy and I would living from blood test to blood test every 6 months -- I have to at least consider QOL.

DR has me scheduled for f/u in 6 months - but has yet to see current labs.

Thanks, Ed

12 Replies

Ken,

This isn't something a doctor would be interested in, but I would want to know my estradiol [E2] level. (it should be 20-30 pg/mL).

With T at 421 ng/dL (<350 is hypogonadol), there is the possibility of estradiol dominance. Some would say so what?, but I believe the E2:T ratio is significant.

-Patrick

I can only say that I have been on continuous Lupron for 19 years and PSA is .17 after all this time. I do have fatigue but otherwise a pretty enviable life.

tallguy2 profile image
tallguy2 in reply to StonePilot

This is awesome! Thanks for sharing.

ken12491 profile image
ken12491 in reply to StonePilot

Thanks, SP ---- did u have RP prior to the Lupron? being on it for 17 yrs is amazing - u must be a strong person. What is ur T - level?

When I got my 1st hit of Lupron my T level went down to 21 from 505 - I was in a zombie-like state.

ken12491 profile image
ken12491 in reply to StonePilot

SP --- did u have any procedures b4 going on Lupron? How old were u when u started on the Lupron?

ken12491 profile image
ken12491 in reply to StonePilot

Thanks for your feedback - what was your primary treatment, surgery, radiation, etc ---- wow that's a long time to be on lupron --- did they give u many ' vacations ' from it.

Did u gain a lot of weight --- I did, lost since being my last 3 mon shot in May 2018...

I don't understand. You wrote:

"Started salvage radiation treatment - 5/2017 - PSA 1.23 in NYC

Also Lupron - 1 shot 5/2/2015... stayed at the level for the year while on that medication...

40 RT ( IMRT ) treatments, that began on 9/18 ( at Sloan )"

So you meant that you had Lupron starting on 5/2/2018, right? And to stay on it a year, you cannot only have had 1 shot, as you say. and did you have TWO salvage radiation treatments - one starting 5/2017 and the other starting 9/18? Did you have ADT with both salvage radiation treatments, and for what duration?

ken12491 profile image
ken12491 in reply to Tall_Allen

hello Tall Man - sorry for the confusion...

Had my RP on 2/27/17.....not at Sloan.

Started ADT lupron on 5/2/17, not 5/2/18 at Sloan

Last Lupron shot was on 2/2/18

Had IMRT ( 40 ) at Sloan that started in Sept 2017.

Had several Lupron shots, may have had 5 in total over the year.

The shots and perhaps the IMRT kept me at a non-detectable level for the entire yr.

PSA on 5/2018 again non-detectable.

Had only ONE Salvage Radiation treatment of 40 treatment, they began on 11/6/2017 - call u have more than one?

Just had my first follow up follow up since 5/2018 on 12/17/18

PSA is now .19 on 12/17/18

T Level is now 421.

Dr now wants another PSA test on 1/7/19 based on the .19 PSA taken on 12/17/18

I see more tests, possible ADT and not sure how much more testing I can go thru

Interesting nonograms from SMK --- they say:

' Post-Radical Proctectomy '

I plug in all my #s and it says, without any other treatment then the RP I would have a

15 yr survival rate of 64%!! --- and since I had ADT and IMRT it would probably be higher - if that tool is close to being accurate - I would take those odds.

Another tool from Sloan:

' Male Life Expectancy survey '

Again, I plug my #s in and the tool says - without any 'curative treatment' at all, results would be:

15 survival rate would be - 64% !!

You seem to be very knowledgeable - thoughts, suggestions, ideas are welcomed.

Wrote a similar note to my uro, said all great points and is calling later today

Thanks, Ken

Tall_Allen profile image
Tall_Allen in reply to ken12491

What you wrote is still not quite right, but it's close enough to give a picture. You wrote:

"Had IMRT ( 40 ) at Sloan that started in Sept 2017....Had only ONE Salvage Radiation treatment of 40 treatment, they began on 11/6/2017 - call u have more than one?"

So whether your salvage radiation began in Sept or November doesn't matter, but it seems you only had one - yes, you can have more than one if they are in different areas. You don't specify which area was treated -- if it was prostate bed, and the PSA is only from pelvic LNs, you can still have your pelvic LNs treated. You also don't mention your post-RP pathology (Gleason score, positive margins, EPE, SVI) - I assume it was adverse if you got a year of Lupron with it. And if so, they probably already treated your pelvic LNs. If that's the case, hormone therapy may prolong your life.

Dana Farber is doing a trial for non metastic patients with Lupron and Zytiga.

SK may be doing the same trial.

ken12491 profile image
ken12491 in reply to jedgar1

Thanks but my is regional - I did talk to a MO about Zytiga but I was not a good candidate since it was regional. Are the MO now adding that even when it's not yet metastatic for a ' curative ' approach?

Thanks, Nalakrats - a question or two...

when u say ' Pet Scan may see where the PCa is Hanging out ' doesn't it go most times 80% to the bones - my PET scan in Sept 2017, was totally clean -- is it possible that the PC could have metastasized to other soft tissue that fast? I'm not even ( but very close to BCR ) but were could it be hanging out? Nodes were RT to the fullest degree I believe.

I was under the impression that mean time from BCR failure to metastasis is about 6 or 7 yrs.

This stinks, we all have clouds over our heads but at some point, and to save QOL, I might turn this over to Gods hands. I don't like it but do accept my mortality.

I honestly believe PC never really goes away for good - meet a guy during RT that was nadir for 10 yrs, then PSA showed up - was sent off to have RT.

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