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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swwags
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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.
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.
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.
"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."
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?
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?
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.
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.
(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.
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.
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) If you got surgery followed by radiation you can stop ADT after six months. If you do not mind the side effects of ADT, you can continue with that as long as you wish - all your life if you desire.
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!). Usually you can get an LU177 therapy if a PSMA PET/CT shows lesions which could be treated with LU177. You can get it while you are on ADT or while you don't. The trial will include a PSMA PET/CT to see if there are lesions.
What if it fails, have I opened myself up to Castrate Resistant PC since I stopped ADT? You become resistant while you are on ADT, not while you are not.
What if it succeeds? How long is it expected to last before needing treatment again? In my case I needed treatment again after three years but I did six months of ADT after the LU177 therapy. This was my choice, not the recommendation of the doctor.
Thank you GP24. Your comment "What if it fails, have I opened myself up to Castrate Resistant PC since I stopped ADT? You become resistant while you are on ADT, not while you are not." - was in line with what I've heard and read before but I've recently read comments that conflict with that.
Also thank you for the LU177 info. I know we're all different and will have different responses (duration) between treatments, so this is helpful. I'll add that I'm getting C-11 Choline Pet Scans every 6 months and that is the plan for my next return in February. I would assume if anything lit up, then the LU177 protocol would be initiated.
Agreed and that's why LU177 is available to me at the Mayo. For the record, I was also part of the Mayos clinical trial comparing GA68 PMSA to C-11 Choline pet scans. For me there was no difference in the results. They were exactly the same. He said the literature on the PSMA being more effective is flawed as the comparison data was historical and from Europe where they use 1/4 to 1/2 the amount of C-11 in those scans. He has sited several examples though where something lights up on one scanner and not the other and visa versa. He is a bit defensive about it as he invented the C-11 but explains it in his latest video. To your point, both are available. I would add imo that all new Pet Scans are effective.
Have the results of this trial already been published? I would be very interested to read it.
In Europe the Cholin PET/CT becomes obsolete because PSMA PET/CT is prefered now. However, I learned from another patient who had a successful Choline PET/CT at a PSA value of 2.0 ng/ml (I believe) at Mayo. I could not understand how this could be the case. My estimate is that you need at least 5.0 ng/ml for a Choline PET/CT.
I think a Choline PET/CT is useful for PSMA negative cancers. It is more sensitive than an FDG PET/CT which is currently recommended for that.
I've been in the MAYO trial PSMA vs Choline. Both picked up the same 5 points at 3.9 PSA. The PSMA was brighter. Choline picked up one other spot which was ruled out. Note PSMA only picks up spots that are PSMA active. Choline can also pick up non PSMA PC and potentially other cancers I believe. Anyone know what other cancers it may detect?
I also had PSMA scan at PSA 1.5 in UCLA trial and it showed 3 spots, that scan was considered non definitive. I had Choline right after that and it seemed to indicate one spot on opposite side of pelvic. Note no bone involvement was ever picked up.
Next week I get another Choline scan after PBLN IMRT and two years of ADT.
Thank you Magnus1964. I will for now as I posted above - "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." As I mentioned, these were options presented to me by my oncologist. I wasn't looking, hence the questions.
Lupron like all adt sucks . But APC gone wild sucks more . Some have used Lupron for 12 yrs or more . I’ve been on constant adt over six years now . If Lupron keeps it away so be it . It is up to us fine fellows to deal with the many long term side effects of adt and simply put , just not having any testosterone to fuel the ship … 👍⛽️Good luck .
Nobody knows. Everybody's different. Some say continuous ADT just makes you castrate resistant quicker, some say you can be on it all your life. Some say intermittent ADT puts off castrate resistance longer, some say its like not taking antibiotics long enough. There seem to be so many different results from different people that you really can't take a poll. My suspicion is Dr. Kwon is trying to think out of the box and get you into something that reduces ADT for a reason. It might have something to do with his conclusion in his last video that a substantial percentage of people that take continuous ADT develop resistant strains (transdifferentiation into resistant and lethal neuroendocrine cancer). Maybe he thinks you're likely to do so. understand, I'm just guessing
Hi Swwags, Sorry to read about the challenges you've faced with Pca. Alas I don't have anything new to add but just wanted to say I'm glad you posted these questions. Hope the ADT keeps working for you as you research it further.
I have been on for almost 4 years and it is lifelong, if I stop it could and probably let the cancer take hold. Also on arbitrone since last December and the PSA is stable and below 1 so not about to sink the ship . Other than the hot flashes I feel good, still work part time at 70, do between 7000 and 12000 steps a day.
When Roberts says "I was eligible for LU177 treatment" where is she talking about having it performed? There, or somewhere else, as in Germany or something?
No not quite. As I said, I left the abysmal U of M system after my follow up with the surgeon. I had a couple of visits with assistants before that and all they discussed were penis pumps. The surgeon, who's name I will leave off here, said he believed my cancer was resolved at the time, so no recommendations and I didn't stay with him anyway.
Once my PSA started to climb again, I went back to my Urologist who referred me to a radio oncologist. Hence the radiation to the prostate bed. She never mentioned it either. My urologist then referred me to the Mayo once I gave him a list of reasons I would not return to the U of M.
When I went to the Mayo they certainly brought it up but didn't push it. I did ask if it was possible to use as a last resort other than first order of treatment and the answer was yes, certainly, depending on how the cancer will spread, PSA doubling time etc. I asked about the efficacy in relation to time and while it's common to say ADT is effective for about 2 years, Kwon said everyone is different and some are on it many years. I asked if using it as a last line of defense vs a first line was a viable option or a stupid question and he repeated that everyone is different but said the question wasn't stupid. It's somewhere in my clinical notes that patient "prefers to defer ADT", (not refuses). That was probably back in 2017. After the lymph nodes were removed and confirmed no cancer, it was wait and scan/PSA approach every 3 months. Then the mets showed up in 2018 and we decided to target them with SBRT. The next time a scan presented a tumor in my lung, Kwon said chemo/ADT was the option and I went with it.
With a positive lymph node, radiation to the prostate area only makes no sense. Maybe back then it did, to them. The ADT should certainly have been included, not suggested. They should have described how it enhances the radiation, given a list of the possible side effects, and then left it up to you.
However, if you brought it up first that you were looking to avoid it that is a different story. I’m not saying you did and are lying, but sometimes we drop hints or in the context of the ADT conversation let on that we don’t want it.
Men typically have heard a lot of very bad things about ADT and are quite determined to avoid it. The truth is not nearly that simple.
Docs are quite accustomed to this, so they often back off when they see it. I don’t understand it and don’t want to understand it. Why remove an important part treatment if the patient doesn’t tell you upfront they are refusing?
In your situation I would have made it clear if you didn’t take ADT with the radiation that you were making a big mistake.
Im sorry you got such shoddy care early, but that’s over. Onward! A lot has changed since 2015-17 anyway. Great luck to you.
I guarantee I was never offered ADT until I went to the Mayo. It wasn'tmentioned to me @ U of M or the facility where I received my prostate bed radiation. I knew about it as I had begun doing research. When Kwon mentioned it I did say I prefer it as last resort but deferred to his expertise. Months later, after I was being treated at the Mayo, I saw my Urologist for an unrelated matter and he said the very same thing. I'm surprised they didn't put you on ADT right away.
I surmise this is what happened. I refused to return to the U of M where my Oncologist was. I went back to my Urologist and he tracked my PSA. Once it began to rise, he referred my to a radio oncologist who's focus was to radiate the prostate bed. I don't know why but it seemed like she was just assigned a task, not a patient. Anyway the treatment failed. My Urologist then referred me to the Mayo. I can look back at all of my clinical notes to see when they first offered the ADT. If I find it I will post here. I did not refuse it but do recall asking if it could be deferred. Now maybe they took that as a declination and that's on me but honestly, I can't believe that's how they would have interpreted it.
As you say London441 Onward! My goal of this post was not to look back and hear what a screwup I was or my previous providers may have been so thank you for the post.
Good! So true that looking back to whatever we may have screwed up (or what was screwed up for us) is useless for us, I never do it.
However I think it’s great when we share it here, for those who come after us or if it might be able to help someone else in any way. I know I’ve learned plenty on this forum alone. Thanks for the details!
OK guys, I checked my clinical notes dating back to my initial visit @ Mayo 2/2017. I in fact initiated the discussion about ADT vs. Orchiectomy. This is from the Dr at the time (not Kwon) but a team member:
IMPRESSION/REPORT/PLAN
"Mr(swwags) called with some questions regarding his upcoming salvage pelvic lymph node dissection which is scheduled forApril. Please see clinical notes from today regarding his history. His PSA is currently 1.77 , and he has no other sites of metastatic disease based on our imaging studies other than a single pelvic node.
He had questions regarding utility of androgen deprivation therapy in this setting and/or orchiectomy.
I spoke with him at length.
I explained that our goal with the surgery would be to perform a resection of this node and a complete bilateral extended pelvic lymph node dissection. He may be treated with four to six weeks of Casodex post operatively at the discretion of Dr. Karnes. We would repeat a PSA at three months. We would hold off on androgen deprivation therapy at the current time and not perform a bilateral orchiectomy.
The decision to initiate androgen deprivation therapy such as the LHRH agonist or antagonist or surgical castration would depend on a myriad of factors. I reviewed with him the conflicting data on timing of androgen deprivation therapy initiation in patients. I explained that at least in him ,we would check PSA levels every three months; and if he were to have a PSA level rising after the salvage node dissection that we would need to weigh several determinates including absolute PSA, PSA kinetics ,and PSA doubling time. We would also likely repeat imaging if his PSA level were to rise significantly and that would help guide next steps including potential for metastasis-directed therapy such as SBRT versus initiation of systemic treatment including androgen deprivation therapy. I said that he is still well off from these discussions, but he was grateful for the phone call. We will proceed with salvage lymph node dissection as scheduled in April."
After that I reviewed all notes. Now that's clinical notes every 3 months from 2/2017 to 2/2020. In one note it mentions I would prefer to defer ADT if that is reasonable. No mention of their response but I can say with certainty, if Kwon would have said you should be on it, I would have been on it. And I did once he recommended chemo followed by ADT
So the choline scan showed low uptake in nodes that was a false positive. And basically what was going on was a metastasis in the lung that was hiding from scans. Do they use radiation on lung metastasis? I don’t think so. This prostate cancer is an elusive, shape shifting booger. So the plan now is tonise LU-177 on the lung metastasis, right? Sounds reasonable
Yes and I believe they no longer appear on the scans I've had since. EDIT: Yes they can and do SBRT to the lungs but with the mets in 2018 and then the lung, Kwon basically said this hunt and peck targeted approach is no longer working and I need to be on chemo and ADT. And they did believe at the time the uptake on the aortocaval nodes were a false positive. He probably explained why and I don't recall the answer.
I am not sure who you saw at University of Minnesota but my husband was treated there for many years when we lived in MN. They were always trying to get him on ADP and he finally agreed once his cancer was metastatic to his lungs as shown on a C11 Acetate scan done in Kansas City. He received the lung surgery at U of M and it's true that he was lucky to survive their hospital experience. That's another story.
U of M actually gave him a shot of Lupron once at a critical time just before he had brachytherapy which masked the success (it failed) of the brachytherapy. That was very disappointing to us and an emotional roller coaster.
At the time we always went to Mayo for second opinions and saw Dr. Kwon and others. Our insurance said they wouldn't cover his scan. He was in the early rock star stage then but we felt the Mayo experience to be like herding cattle. They were also way behind on laparoscopic prostatectomy when it was being done in Detroit and Florida. Despite many attempts we could never get my husband into a clinical trial at Mayo. Besides Kwon, the others always told us to stick with standard of care and laughed us out of there. One of them actually told us that we had one of the finest MO in Minnesota right at our backdoor in Burnsville, MN, and to go see him. We already had an appointment scheduled.
It is possible that U of M has gone downhill and Mayo uphill since our earlier experiences. With Dr. Ryan now at U of M I find that difficult to believe.
I am recommending you to have a second opinion discussion with dr sen. dr.ishitasen@nuclearmedicinetherapy.in that's her email id. She is currently the head of the department of nuclear medicine & molecular imaging at FMRI India.
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