I'm confused regarding Lifelong ADT vs. Adjuvant ADT, what my options are.
Recently at the Mayo - please read my profile, it's a quick read. I met with Kwon and he indicated I could end ADT in 6 months (that was in September). OK, that confused me as he initially told me 2 years when he originally recommended it, then on my last visit clarified that meant 2 years after the start of chemo. My first Lupron injection was on the last day of chemo. Currently my PSA remains undetectable. He also said I could remain on ADT as many men stay on it for years, but that his assistant had some exciting news for me.
Then I met with his assistant Madison, who is involved with the VISION Trial and she indicated that I was eligible for LU177 treatment. She explained what they know and I have my doubts about the VISION trial but recognize the LU177 is used worldwide.
So some questions:
I'm clearly on Adjuvant ADT - if I can remain on it for years as Kwon suggests is possible, what is the differentiation from lifelong ADT? (sorry I searched here and googled. Can't find the differentiation)
I assume if I discontinued ADT, I would wait until cancer reveals itself again, then undergo the LU177. That could be weeks, months, years(HA!).
What if it fails, have I opened myself up to Castrate Resistant PC since I stopped ADT?
What options would I have then?
What if it succeeds? How long is it expected to last before needing treatment again? Seems results, or rather repeat visits are all over the place.
As you can probably tell, I'm a bit scared to act as actions have consequences and those if/then scenarios aren't always answered by doctors.
I'm in no hurry and plan on remaining on Lupron beyond the next 6 months until I learn more, assuming it's still working.
I appreciate your help/ input.
FWIW, I don't know what kind of PC I have. I don't think insurance covers the genome analysis.
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I think you are creating your own problems by going on and off ADT as you have been. You should never have been taken off it. Kwon makes a career out of "treating PSA" instead of the cancer. Suggest you see Charles Ryan at U of Minnesota instead.
I was never taken off it. I was told during my last visit that I could discontinue it in 6 months if I wanted and also could continue.
What problems are you referring to? You've mentioned it in the past but I can't seem to find a rationale.
Sorry I misunderstood. You should have been on ADT from the time positive lymph nodes were discovered, and you should have had whole pelvic radiation. Your treating individual lymph nodes without ADT is proven to be worthless. You might have been cured if you had had that treatment. Suggest Charles Ryan at U of Minnesota.
Can you give whole pelvic radiation after having already received radiation to the prostate bed, which it appears was given to him at University of Minnesota.
Yes. They can treat all the parts that weren't covered when the prostate bed was treated if they find any cancerous LNs.
The reason I left the U of M was poor treatment, lack of information and appalling conditions in their facilities. I left the hospital less than 24 hours after surgery. I had one follow up with the surgeon who at the time was chief of surgery and had no further recommendations other then to check PSA.
I went back to my urologist and asked him for help and he referred me to radiologist where I received radiation to prostate bed due to biochemical recurrence.
My Urololgist then referred me to Kwon as the radiation did not resolve. Kwon ordered lymph node dissection (29 removed) and none showed cancer. Scans followed every 3 months until Mets appeared. I followed provider advice and didn't refuse any care. At no time that I recall was cancer confirmed in my lymph nodes.
In lymph nodes:
"13. July 2017...did have low-level uptake in one retroperitoneal lymph node.
"14. .Nov 2017 ..In contrast, C-11 choline PET scan was showing some very tiny lymph nodes in aortocaval region in the retroperitoneum.17. .Oct 2019.. low-grade activity within the upper aortocaval lymph node.
18. Jan 2020...There was stable small mildly choline avid aortocaval lymph node.
19..Jan 2020..There was stable small mildly choline avid aortocaval lymph node. "
In bones:
"15. May 2019: PET scan revealed choline avid right scapular metastasis and minimal choline uptake in the left iliac wing.
In lungs:
18. Jan 2020...increased activity in the left perihilar focus
20. Feb 2020 - Chemohormonal therapy begun
So, from July 2017 when your first metastases were detected until February 2020, your cancer was given free rein to grow and spread from lymph nodes to bones to organs. No ADT was given to you, even though ADT would have been standard of care in your situation.
Adjuvant ADT is an attempt at curative therapy. It is adjuvant (added to) radiation and is given for a limited time. If you had had radiation to all your pelvic lymph nodes in July 2017 and had 2-3 years of ADT with it, it would have been "adjuvant."
When you began ADT in Feb 2020, it was lifelong.
you make a valid point, but perhaps with the benefit of hindsight? Could make the same argument about the radiation being pelvic also with ADT added, when he had it done at the U of Minn. Even using a Roach calculation, seems lymph would be suspected. But, this is 2017, four years ago. Lots of studies and changes since then. I would be curious what the thought process was once the Choline PET showed a low uptake in a lymph. I wonder if he was concerned about radiating twice, hence the surgical removal of the node. Also, I wonder where the LU-177 she is talking about is to be performed?
The LU177 will be performed at the Mayo.
That's really good news. I've heard them refer some to Germany so you must be one of the first. I would be pretty excited. But if ADT is keeping it totally in check, to the point that it doesn't even show up on a PSMA scan, will LU-177, even if successful, be as successful as if you weren't taking ADT? Question, questions. What an interesting case.
Right, my assumption is just that, an assumption. I assume I would discontinue the Lupron in what would now be 4 months then wait until the cancer reveals a location?
Question I thought the VISION trial reported their results. Is the trial still continuing?
I'm assuming it must be continuing for LU-177 to be used in the US which to my knowledge hasn't been FDA approved at this point.
I also thought it was for matastatic Castrate Resistant PC.
You indicated you have not become castrate resistant at this point?
yes the vision study is up for review by the FDA so to my knowledge - done. Yes it is intended for MRPC but they told me I would be eligible. I had 15 minutes with her as she explained the technology. I have a boatload of additional ones that I'll ask when I return, including that one as I don't have MRPC
Seems to me they are doing you a solid by letting you take the LU-177 prior to being resistant. Dr. Sen in India said there are some premininary studies showing it may work better the earlier it is used.
That is my assumption at this point as well. I think I might have noted somewhere in this thread that I was with her for about 15 minutes as she explained what it was and what it does. It wasn't until the drive home (as is typical of me) to start to form questions. It comes at you very fast as they have so many patients. The radiology reports come easy for me because they're posted the night before and I can review the findings, ask pertinent questions etc.
But this was out of the blue. I'm getting more comfortable with the idea. You all are helping me work through, both the analytical part and the emotional part. I'm appreciative.
When he had his salvage radiation, prostate bed only was entirely appropriate (GS 3+4, N0, PSA=0.5). Roach formula is only used for primary RT and has no relevance here. He certainly could have had salvage to the entire non-overlapping LN field, although the expansion above the common iliacs has only become standard recently.
But even if we discount extra salvage radiation, it is hard to understand why salvage ADT was not begun in July 2017, since that is when distant metastases were detected.
Hopefully, Lu177PSMA will add extra time.
OK I feel foolish now and partially regret my post. Your last paragraph answered my question above. The rest of the post feels like piling on. That I don't need. Thanks. No need to reply further.
The question re taking a "vacation" from ADT and Zytiga/prednisone seem to have many different answers! I have done quite a bit of reading and follow this blog...as in all things prostate cancer there seems no definite right or wrong answers. My husband (diagnosed with aggressive stage 4 metastatic prostate cancer in Nov 2020) went through 2 rounds of cyberknife to target prostate cancer, a known involved lymph node and a second suspected node, both considered regional. No bone mets detected. The oncologist prescribed quarterly Lupron shots for 1 year...completed in July and Zytiga/prednisone to be completed in January 2022. Then "vacation". I was concerned about stopping what was clearly working. The oncologist put our minds at ease indicating that stopping all medications, running scans and testing psa every 3 months would be the only way to determine if the cyberknife did it's job. He also indicated going off the drugs would not allow his progress to slide and that he would not have lost ground if he went back on. He also felt the "vacation" would allow his T to start building and give his body time to feel better. We believe in our Seattle Swedih Hospital team and pray our decisions are right.
Thank you so much for that information Mustang-66.
(1) There is no such thing as a vacation from adjuvant ADT.
(2) Vacations from lifelong ADT may or may not be advisable - really up to the patient
If he had SBRT to the prostate itself + SBRT just to the detected lymph node metastases, that is certainly a bad idea. Clinical trials have shown that the entire whole pelvic area must be treated, not just the detected metastases.
prostatecancer.news/2020/12...
Adjuvant ADT with Zytiga probably improves results. But what you describe is NOT a vacation - it is ENDING hormonal treatment. Not sure why he is not continuing with Lupron and Zytiga -a small trial indicated that Zytiga alone may be possible, but it is risky.
Yes, it is true that stopping treatment is the only way to determine whether treatment so far has been successful.. But satisfying your curiosity isn't a good enough reason to risk progression, is it? Hopefully, that amount of adjuvant Zytiga will be enough - but unless the entire whole pelvic area was irradiated, it will probably come back.