Johns Hopkins advice: I was diagnosed... - Advanced Prostate...

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Johns Hopkins advice

shueswim profile image
39 Replies

I was diagnosed with G9 PCa back in ‘16. After an RP with positive margins and an undetectable PSA I chose to undergo adjuvant RT and a year of ADT. My PSA remained undetectable for 27 months post surgery until early September week when it registered 0.4. Two weeks later I retested and it increased to 0.5.

I traveled to Johns Hopkins last week to meet with Dr. Mario Eisenberger to discuss my options. I expected to hear ADT and possibly chemo as well but instead it was recommended that I do nothing for 3 to 6 months in order to get an accurate gauge on my PSA doubling time. Dr. E stated that there was no proven benefit of starting ADT early, in fact he mentioned that they rarely start it before a patient's PSA hits 10. This run counter to my proactive nature and urge to do "something" now, but I guess I need to follow their advice. I will be meeting with my local MO to discuss further this week. Do anyone have reservation about the wait and see approach under my circumstances?

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shueswim
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39 Replies
YostConner profile image
YostConner

I see Dr. Carducci at Hopkins. This is similar to advice he has given me over the past 11+ years.

Tall_Allen profile image
Tall_Allen

This is a controversial subject. The TOAD trial suggested a benefit to early ADT, but with only 5 years of f/u so far, it is still too early to be sure.

thelancet.com/journals/lano...

I think most MOs would advocate ADT if your PSADT is less than 9 months. You can also get a Axumin PET scan - if distant mets are detected, that is a good indicator that ADT is appropriate.

MichaelDD profile image
MichaelDD

I was a G8 and had DaVinci in 2016. After RP first PSA was .024 then waited next in October .042 Mid Oct '16 38 sessions radiation. Came out after .080

Since then doubling every 3.2 to 4.5. months. Overall average 4.2 months. This month PSA is 1.7 Without "anything " my Oncologist has yet to pull the trigger on ADT/chemo.

3 scans have shown nothing. Last Friday I had the GA68-PSMA at UCSF. Waiting this week for results.

He too discussed 10. The change for me is now what will Friday show? His thoughts were if that warrants action then of course we start. Now that I'm in"single digits" and if I have a doubling in 3 months then that too is a big consideration.

Feel confident with him. He is close to the researchers at UCSF. His college roommate is there and is part of the team involved with much of the prostate dealings. He consults with them regularly. Feel confident with him (or of course I wouldn't be his patient!)

tango65 profile image
tango65

With a PSA of 0.5 a Ga 68 PSMA PET/CT has a sensitivity around 66%, which is higher than any other PET/CT study.

meetinglibrary.asco.org/rec...

There are clinical trials for these studies. You could check clinicaltrials.gov .

I f you do not qualfy, perhaps you could get it done at UCLA (cost around $ 2700, Dr.Wolfgang Fendler

310-825-3617) . If metastases are detected with this study your situation will have to be re-evaluated .

There is a clinical trial for the vaccine Prostvac for patients with BCR when they reach a PSA of 0.8 or higher. This vaccine does not work in castration resistant cancer but it seems to work in hormone sensitive cancer. I had this vaccine in 2007 and stopped the progression of the PSA for 6 years.

clinicaltrials.gov/ct2/show...

There are trials for other vaccines. Perhaps you could qualify for some of these trials:

clinicaltrials.gov/ct2/resu...

podsart profile image
podsart in reply to tango65

Dr fendler’s PSMA scan - is it part of being in a clinical trial , what are his requirements?

tango65 profile image
tango65 in reply to podsart

I believe Dr. Fendler is part of the faculty at UCLA doing the Ga 68 PSMA studies. I do not know what their requirement are at the present time. You may need to call them and see what they have to say.

podsart profile image
podsart in reply to tango65

Thanks

Spaceman210 profile image
Spaceman210 in reply to podsart

Another UCLA doc involved in the PSMA trial is Johannes Czernin in Nuclear Medicine. Requirements to get it free include having radiation already scheduled and for the R.O. to agree to use results in the treatment planning.

AlanMeyer profile image
AlanMeyer

I don't know the answer to your question but here are some hopefully relevant thoughts.

First, it's hard not to take Hopkins oncologists seriously. They are among the world's leading prostate cancer experts in both treatment and research.

Second, there are differences in the kind of treatment that will help depending on the aggressiveness of the cancer. For example, it is my understanding that the combination of ADT + chemotherapy is only better than ADT alone in patients whose cancer is quite aggressive. If it's not very aggressive, then ADT alone does just as well and the side effects and risks of chemo are all for nothing. I believe that Tall_Allen has posted on this issue in the past and has a blog post that discusses it. If that's right (Tall_Allen and Dr. Eisenberger both know much more about this than I do) then you don't want to rush into chemo unless and until you know it's helpful, and you may have to delay treatment to find out.

As for the best PSA threshold for taking action, as Allen says, there seem to be different points of view. 15 years ago, when I was diagnosed, Dr. Patrick Walsh, possibly the leading PCa urologist in the U.S. was saying there was no benefit to ADT until a patient is on the verge of experiencing symptoms. We now know that that is wrong, but I don't know whether treating 0.5 extends life longer than waiting until 10.0.

Best of luck.

Alan

elvismlv123 profile image
elvismlv123 in reply to AlanMeyer

PSA 10 is not a target. I believe all PSA numbers above 4 are suspicious and require treatment. The only caution is hormal resistance and hoping if you wait this wont occur when being treated. They call it CRPC (Castrate Resistant Prostate Cancer.)

The term medical castration which to me is a horribly wrong expression. Firstly it is not castration as it is not permanent. It reduces Testosterone to castrate range. To me thats not the same as surgical castration which is abhorrent to men.

elvismlv123 profile image
elvismlv123 in reply to AlanMeyer

If there is no reason to have a PSA at all any number means trouble. If you get any meaningful info out of the exact number Id like to know exactly how the treatment might be altered to benefit the patients outcome? To me its like being a litlle bit pregnant...

You either are or not and waiting for a number seems senseless to me.

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

Sounds like a crap shoot to me....

Good Luck and Good Health.

j-o-h-n Tuesday 10/16/2018 8:38 AM EDT

pjoshea13 profile image
pjoshea13

My feeling about ADT is that, considering the short mean-time to failure, why start it early?

ADT alone is merely palliative.

-Patrick

AlanMeyer profile image
AlanMeyer in reply to pjoshea13

Hello Patrick,

If by "palliative" you mean that the treatment only reduces symptoms but does not extend life, I think we now have evidence that ADT is more than just palliative. The advanced ADT especially (abiraterone, enzalutamide, maybe apalutamide) have been shown to extend life and even the traditional LHRH agonist form of ADT does actually kill off significant numbers of tumor cells and does hold down the rate of tumor cell replication and therefore reduces the number of tumor cells that might be mutating into more aggressive forms. This too does extend life for many men.

Alan

elvismlv123 profile image
elvismlv123 in reply to AlanMeyer

Right on Allan

Dominick

pjoshea13 profile image
pjoshea13 in reply to elvismlv123

See my response to Alan.

pjoshea13 profile image
pjoshea13 in reply to AlanMeyer

Alan,

I was referring only to castration therapy. When shueswim referred to ADT there was no reference to abi, enz or other add-ons.

Apologies for the confusion.

But I read all the time of "abiraterone was also approved for use in the new population of asymptomatic or mildly symptomatic patients having failed ADT" [1] & "novel therapeutic agents in conjunction with ADT" [2], etc.

I have no problem with Enzalutamide being classed as ADT, although I never saw Casodex referred to as such.

-Patrick

[1] ncbi.nlm.nih.gov/pmc/articl...

[2] urotoday.com/conference-hig...

elvismlv123 profile image
elvismlv123 in reply to pjoshea13

Casodex has a history in ADT going back a ways and so does flutamide.

And dont forget Finasteride and Avodart.

All these screw around cancer cells.

elvismlv123 profile image
elvismlv123 in reply to pjoshea13

Hi Patrick,

While it would seem so it can be more than just palliative.

It has offered hope to many men with advanced ruinous PCa for many years.

Men who had no hope lived many years productively and happily. UROs think its worthless and palliative is exactly that...go home and die.

pjoshea13 profile image
pjoshea13 in reply to elvismlv123

Hi Elvis,

My point really, is that Lupron, say, by itself, cannot be a cure. If it were, I would have started using it 14 years ago when RP & RT failed.

For most men, it will fail in 18-24 months, so why rush into it? Save it for when you really need it (IMO).

Some might argue that it could delay mets, but the downside is that CRPC is far more aggressive than pre-ADT PCa & hard to manage.

-Patrick

elvismlv123 profile image
elvismlv123 in reply to pjoshea13

Hi Patrick,

First let me say I miss you on our site. You are one of the most knowledgeable people I know.

With Lupron maybe we have to redefine cure. If one demises with PCa and not from PCa to me that is a cure for PCa. We have an old age endpoint where many causes can do you in. So its a race to the finish line. If we can abate one of these killers then we are good stewards of our bodies and lives.

No one knows Lloyd Ney and his group of Lupron advocates whose lives were extended many years when all were considered terminal,forsaken,hopeless and in terrible agony. Mr Ney petitioned Congress to bring Lupron into this country.

Was that for nothing? A friend 81 hard as a rock prostate, large tumor PSA in excess of 300 did Lupron and died age 96 not from PCa. He was terminal for 15 years...no pain, worked every day and was physically active and lived alone..sharp as a tack.

One anecdotal case Ill never forget.

Regards,

Dominick

pjoshea13 profile image
pjoshea13 in reply to elvismlv123

Hi Dominick/Elvis,

I know you are something of a fan. Naturally, I'm pleased for those who are the exceptions. LOL.

Best, -Patrick

elvismlv123 profile image
elvismlv123 in reply to pjoshea13

to be great is to be misunderstood lol

Spaceman210 profile image
Spaceman210 in reply to pjoshea13

Hi Patrick, as a recent reader of ADT topics, wondering about reasons for first-line Lupron etc. therapy option restrictions vs. some of the newer ones - considering studies going back about 20 years indicating they may initiate EMT and neuroendocrine differentiation.

Regards,

Jeff

pjoshea13 profile image
pjoshea13 in reply to Spaceman210

Jeff,

When I was diagnosed, there was no CRPC. ADT failure was termed 'refractory'. The androgen receptor [AR] was thought to become irrelevant.

The commom PCa cell lines, that appear in almost all of the cell studies are LNCaP (lymph node), PC3 (bone) & DU145 (brain).

PC3: "These cells do not respond to androgens" "and do not express PSA" [1]

"DU145 are not hormone-sensitive and do not express prostate-specific antigen" [2]

But suddenly (after decades) it was discovered that the AR continues to have a role after ADT failure in actual cases. & so began a major effort to shut down the sources of all hormones that might convert to androgen.

Frankly, I was dismayed. The prospect of life without any steroid hormones wasn't very attractive to me.

The continued focus on the AR axis has meant less research money elsewhere.

The lesson from basic ADT (Lupron), Lupron+Zytiga & Lupron+Xtandi, is that failure is almost inevitable, & that the more we try inhibit AR activity, the greater the odds that we will not be able to manage the cancer that emerges. My doctor tells me that his patients' cancer really takes off after Zytiga failure. We just aren't prepared for the types of cells that emerge.

For someone who must be on ADT & wants to maximize its effectiveness, I suggest that a statin is essential - to limit cholesterol uptake (the starting point for all steroid hormones), & to stop PCa cells from making their own cholesterol. In addition, since the whole point of ADT is to stop AR activation by DHT, Avodart should be used. In other words, not only shut the barn door, but shutter all the windows too.

Today, 1st of the month, I inject testosterone. I'm pretty much following the BAT protocol. Rapid alternation of high T to castrate T within each month may interfere with the adaptations that plague current therapies.

-Patrick

[1] en.wikipedia.org/wiki/PC3

[2] en.wikipedia.org/wiki/DU145

Moespy profile image
Moespy in reply to pjoshea13

Patrick,

Great post and thank you for this information. What dose of statin is thought to be effective. I am on 10 mg atorvastatin (past 5 years) and was thinking of increasing that dosage (which my GP is willing). So I am deciding between 20, 30 or 40 mgs?

pjoshea13 profile image
pjoshea13 in reply to Moespy

The studies are suggestive of a higher dose always being better.

It might be prudent to gradually work up to the 40 mg dose.

Best, -Patrick

Spaceman210 profile image
Spaceman210 in reply to Moespy

You read my mind for follow-up - thanks!

Spaceman210 profile image
Spaceman210 in reply to pjoshea13

Thanks for taking time to post this thorough info Patrick, and Happy New Year, best wishes!

Jeff

cancervictim profile image
cancervictim

My husband has a similar history and the uro-oncologist is suggesting stopping ADT and doing a Ga 68 PSMA scan when PSA is high enough. Depending on what is found, the plan is to do SBRT. HIs argument is that it's better to do this now while he's hormone sensitive and cancer is not as aggressive. Did your doc mention treatment for oligomets after Ga 68 scan?

elvismlv123 profile image
elvismlv123 in reply to cancervictim

What is SBRT?

Mrkharn profile image
Mrkharn in reply to elvismlv123

Radiation. It can be focused onto a tumor.

elvismlv123 profile image
elvismlv123 in reply to Mrkharn

I have heard of EBRT, IMRT and now cyberknife. All of these focus on the tumor.

When they say focus.......what they mean is intense radiation controlled by a computer...yes its precisely targeted not to harm normal tissue.Only intense radiation kills cancer cells. We are led to believe only a small portion of the prostate is affected..I dont believe it is true. More than likely you will not have a functional prostate. But we may be talking about salvation RT which doesnt have the same result because the prostate was surgically removed.

shueswim profile image
shueswim

He mentioned it briefly, but the availability of Ga 68 PSMA scans appears to be a problem. I located a list of current clinical trials utilizing these scans, and will be discussing with my local MO later this week.

elvismlv123 profile image
elvismlv123

Hi,

I read your history with serious interest. I did ADT in 2004 and had no surgery or RT.

For a period of 13 months my PSA was .005.There was a debate as to when I should start the Leibowitz protocol after doing the standard protocol. Should I wait and then do the protocol or just start the protocol now. While my story doesnt match yours the feeling is similar. Everything went ok and as a result I had 18 months of ADT of some form.

At some point before I took Prostasol and cut my PSA in half in 3 months but my GS went to 9 from 7. I went to MSKCC for a second biopsy. You cannot do a biopsy with Prostasol in your system. So my GS went from 3+4 to 4+5 and a pathologist from Hopkins called me to find out if I was on Lupron. The Prostasol may have had DES in it and somehow that affected the look of my cells. After ADT 14 years later my PSA is 2. But I wasnt really a 4+5.

What will you gain when you learn your doubling time? Will that alter your treatment?

If you are hormone sensitive is the question.What if you are not? Why find that out 6 months from now? If you do ADT at all do the Leibowitz protocol and stay away from chemo.

Blueslover profile image
Blueslover in reply to elvismlv123

What's the Liebowitz protocol?

Davidl3940 profile image
Davidl3940

Went to MD Anderson. Slow rising PSA. After almost 3 years after RT. Dr suggest it to start ADT until PSA was 1.0.

Moespy profile image
Moespy

I am also at Hopkins and received the same advice. I believe my RO and Mo when they tell me that if my PSADT stays high there is no need to hit it hard early. This will hopefully allow me another couple of years off of ADT with no difference in survival time.

I would suggest looking into getting the PSMA Pet Scan at Hopkins or NIH (clinical trial) and try and find out where the cancer is hiding. I just had the scan and it is limited to one lympth node of which i will talk with my docs about how to treat.

We are with a top 5 PCa hospital and in good hands. I use the information on this this invaluable for to ask questions and discuss alternatives.

Best wishes!!

Mcpawpaw profile image
Mcpawpaw

My MDA MO is recommending Erleada after a rapid DT (less than 3 months) of my PSA to 1.5. This is after a very quick break through of ADT. Auximun scan shows no mets and localization of the cancer in the prostate bed. Does anyone have experience with Erleada vs. Provenge? My concern is in line with what Patrick expressed when the cancer emerges from drugs like Zytiga, Erleada and how to treat it then.

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