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Advanced Prostate Cancer
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Follow up on Salvage RT

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

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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

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Evaluation of all Hormones, IMO--Importatnt---as Patrick said---he and I also follow this E2 thinking, which is also laid out in Dr. Friedman's Book. My E2 is currently 20 while my T is in the 500 range, I test again tomorrow--after talking to another Dr. in Colorado, I am also interested in my total Estrogen. So I will be doing E2, T, PSA, and E1 tomorrow.

Ken you are basically on an ADT vacation--and have completed the first part of IADT. if you take another shot of Lupron, which may be warranted, as you are at about 0.2 as to PSA, where a Pet Scan may see where the Pca is Hanging out. I understand very well the QOL issues. I am on a vacation, now 12 months---and was amazed at how well I was able to feel again. But I do not let the craziness of blood tests get me down, I do them every 30 days for a reason related to my type of Pathology. If my Pca moves, I have to catch it when it does, and react.

Having normal T is something to be concerned with---As activity can re-occur. Castrate Levels, or Super high levels of T, upsets the AR's of the Pca cell.

You can read more about this by searching pjoshea13--posts on this subject.

Nalakrats

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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.

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Great Record!

Nalakrats

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This is awesome! Thanks for sharing.

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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.

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

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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...

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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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Your right it never goes away--I am trying to right a major post on this, along with other important issues--but I am bogged down--every day more info comes to me and I have to decide whether to use it or not.

The Pca cells can be found still in your situation in the Prostate Bed, Lymph nodes, and Bones. They could be micro-metastatic, and circulating in your blood looking for a place to land, and in the case Pca cells have down-regulated their Androgen Receptors, completely and morphed into the Neuroendrocrine form, they can be in soft tissue, as Hormone Sensitive Pca can also sometimes find soft Tissue. There is no one road map to follow.

I just did today my 30 day, every 30 days, PSA, T, and E2, blood tests. And prayed hard for the last 2 weeks as to the results. So GOD is a factor--at least for me.

You may be at the point of needing to return to what worked before--- which would be a form of Intermittent ADT. Even though I am on a primary drug vacation, I still take Avodart, and Arimidex to control DHT and Estradiol, as my natural T is quite high, for my age at this time. The period of time from BCR to Metastasis, varies, depending on the pathology you have, and how agressive it is. You can have BCR, and then Metastasis, in a matter of months. I do not know where you got this 7 year thing.

Pray about it, and seek second opinions--more than one if necessary.

Nalakrats

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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?

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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

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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.

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

SK may be doing the same trial.

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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?

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