Dr. Eugene Kwon (Mayo Clinic) Legit or Hyperbole?

[RJAMSG]

Just wanted to know if anyone in this group had seen him and your thoughts about him.

[Canoehead]

Lots of stuff in this forum about him. There was a long thread about 3 months ago. Do a search. Short version is that he is respected by most, he is very aggressive in his treatment plans, and he is not tied to SOC.

[Tall_Allen]

I've met him and respect him as a researcher on the subject of genomics. He is not an oncologist, but presents a lot to patients. Many patients go to him because of his patient-directed marketing. I have no idea where he gets his opinions about metastasis-directed-therapy, though. I believe he misleads patients about that. Mayo does not have any randomized clinical trials running on that subject. The one retrospective study they did had dismal results:

prostatecancer.news/2020/12...

[Hidden in reply to Tall_Allen]

I think the issue is he puts a lot of stock in the choline scan to show signs of very, very early metastasis, even if it is not corroborated by other imaging and he believes that he can eliminate those metastases by early radiation, presumably before it spreads. Whether he is right or wrong is likely impossible to quantify. But, it certainly seems prudent to try.

[Tall_Allen in reply to Hidden]

C-11 Choline is outmoded now by PSMA - it is hard to see why he still uses it (Mayo invested a lot of money in it - is probably the reason) . There are no convincing data that annihilation of the first metastases that are PET-visible accomplishes anything. There are many more metastases that are not yet PET-visible. If it is safe, why not?

[StePeteMN in reply to Tall_Allen]

This winter I had a C11 scan and a PSMA scan a couple of weeks apart and they looked almost exactly the same--for therapeutic purposes, that is. The C11 showed a few spots not visible on the PSMA, and the PSMA scan revealed that I have low-level PSMA uptake. Otherwise, they showed the same spots, which I didn't expect as I have a very low PSA compared with the number of spots both scans. I know that the PSMA can show more of the diffuse cancer. Bottom line, both are tools in the toolbox.

[Tall_Allen in reply to StePeteMN]

The value of PSMA is that it reveals metastases at lower PSA. AT higher PSA, any PET scan is good.In low PSA-types of PCa, FDG may be more revealing.

[StePeteMN in reply to Tall_Allen]

"The value of PSMA is that it reveals metastases at lower PSA". I don't believe PSA level directly causes any effect with the PSMA scan as it shows where the agent binds PSMA. If cancer is not PSMA avid, (a significant number of patients do not have highly PSMA-avid cancer) the PSMA won't work well. My own understanding of a primary PSMA PET advantage is it's effectively higher resolution--so it can "see" diffuse cancer (or earlier cancer) while other scans (metabolic types) reveal mets of a minimum size (maybe 1mm?). The PSMA and C11 both show non-PSA-producing cancer, which becomes more critical as we go further on this road and more of our cancer volume might not produce PSA.

[Tall_Allen in reply to StePeteMN]

Minimum size is about 5 mm. Neither PSMA nor C-11 Acetate show non-PSA-expressing PCa (because they usually don't express PSMA either or metabolize fats). FDG is better for that.

[Ahk1 in reply to Tall_Allen]

I wish I have listened to you about this subject and stopped chasing it. I could have saved myself a lot of anxiety and panic.

[Tall_Allen in reply to Ahk1]

The biggest danger of playing whack-a-mole is when patients stop ADT because they have made the mistake of "treating PSA."

I've seen one patient whose RO said it would be dangerous because of the met location. He shopped around for an RO who was willing to treat it for the money. He wound up with pneumonitis because of it and many more metastases appeared quickly.

[bean1008 in reply to Ahk1]

I played whack-a-mole with lymph nodes as well…had a second surgery after my RP when we saw some hot ones in a PSMA. My surgeon was convincing that by removing them he believed it could be a potential cure. It didn’t matter…my PSA began to rise a couple of months later and now I’m on ADT.

[JWPMP in reply to bean1008]

Thanks for sharing that. My husband has a few lymphnodes his RO strongly advised against radiating (actually said no, but we could have pushed). Your experience makes me feel more peaceful about the decision.

[Bethpage in reply to bean1008]

You're not alone. My husband's surgeon, a well-known one in Celebration, FL, convinced my husband in favor of a salvage surgery (post simple prostatectomy because 11 years of biopsies had been negative), saying he could "get it all" and my husband would be "the first man cured of prostate cancer by salvage surgery" after an MRI showed what a radiologist and the surgeon both "thought" was a mass under the bladder." Prior to the salvage surgery, an MRI guided biopsy found 1 core of 4 to be positive. The post surgical pathology found zero positive tissue. I've never heard a medical professional sound so beaten as when the surgeon called me to tell me that he found nothing during the salvage and knew that the pathology would be negative. My husband lost 4+ years between the time he should have had salvage RT and the time when he actually had it. Six years later, we feel ridiculously stupid for not having known that salvage surgery would never be the answer. The least we should have done is to have sought a second opinion.

[Grumpyswife]

You can see his speeches on YouTube. He is an wonderful speaker and grew up in a home where English was his second language.

I have a distant relative who started with s different urologist at Mayo who retired. They transferred his to Dr Kwon and both he and his wife absolutely trust Dr Kwon’s care. They drove to Mayo from North Dakota.

[RyderLake2]

Hello, I have heard and seen Dr. Kwon many times at PCRI conferences in Los Angeles. Very knowledgeable and very well respected. He is not afraid to think "outside the box"! Although not one of his patients, I consider him one of my superheroes and a worthy replacement for Dr. "Snuffy" Meyers.

[cesces]

He is as legit as you will find.

[leebeth]

My husband sees Dr Kwon, and he works hand in hand with our local oncologist. His treatment recommendations have been in agreement with my husband’s second and third opinions, so nothing really outside of the box, although one of our consults would have had my husband fail carbazitaxel monotherapy three infusions prior to adding carboplatin. Considering my husband had questionable results on docetaxel last year (his response was very short lived, and might have simply been the effect of starting ADT), and my husband’s PSA was tripling monthly from October to January, I think he was right to suggest the cocktail upfront for the recurrence. Johns Hopkins agreed.

He treats my husband with utmost respect, and schedules phone consults in between in person visits.

He inspires confidence in my husband, not pie in the sky optimism given his aggressive cancer, but he gives him hope. Hope is essential to comply with an aggressive treatment plan.

Mayo Rochester itself runs efficiently and is a well oiled machine. We have never been in a lengthy holding pattern, waiting to speak with the doctor regarding results.

All of our questions have been answered thoroughly and promptly.

We know that in the future we may need to seek clinical trials at other sites. (We were hoping to get into the Lu-177 expanded access trial at John Hopkins, for example, but we were too late. Mayo never offered that.)

I hope this helps.

[Jackpine]

You will find those of us who love Dr. Kwon on this site and I’m one of them. I’m 8 yrs in 7 years at stage 4. I like that he is aggressive and knows what research is being done. He listens to his patients and has their best interest at heart.

He uses a team approach and I have the utmost respect for him.

[Hawk56]

I saw him in January 2017 after surgery and SRT didn't work (see the attached chart I keep of my clinical history. TA has his thoughts which I understand but....When I had BCR in late 2015, I talked with my medical team about the emerging data from clinical trials about combination therapy, adding six months ADT and including the PLNs. (Mayo had emerging data that indicated BCR often included the PLNs, not just the prostate bed). They said there was not sufficient long term data to warrant doing that. I listened to them did the SRT, it failed....

I went to see the Chief of Urology at KU Medical Center, his resume was impressive. I laid out my clinical history, talked about the STAMPEDE and CHAARTERED (sp?) studies and he said they did not apply to me and he would only treat me with Lupron. When I said yes, but at the current PSADT and PSAV, it won't be long before I do, he shrugged me off.

Having made the mistake of going against my instincts and not insisting my medical team include the six months of ADT and the PLNs to the SRT, I was not about to make that mistake again. So, I thanked him, left and never went back.

I did see a video by Kwon, what got me thinking was his approach, rather than linear and sequential treatment with each destined to fail and then death, bring them forward in the treatment and combine them when the PCa is in a state where it can be "overwhelmed." That's the layman's version...I never infer that I have had any medical training or education.

So, off to Mayo we went, had the C11 Choline scan, fortunately, no organ or bone involvement, just PLNs. I had already decided that the triple therapy was what I wanted to do so when he recommended that is what we do, I said yes.

The last Lupron shot was in May 18, by October, T was 135, so 3-1/2+ years later, I see my urologist every 2-4 months for labs and consult, we have not had a need to pull the trigger on going back on treatment.

There were some "bedside manner" issue for me with Kwon.

He talked about adding Zytiga at one point and then at the next appointment he said nothing. When I asked him about it, he seemed oblivious and shrugged, said nothing and ended the appointment. Hindsight being 20-20, I later realized adding Zytiga was not needed given my response to the ADT and chemotherapy but it bothered me that he did not seem to have reviewed his summary from the prior appointment and said "I have decided that at this point we do not need to add..."

On our next appointment, he was running late. Not a problem, to mean that often means the patient(s) before me are getting the time they need and I'll get mine. He walked in, said he had a meeting in another building and needed to make this short! Hmm, that's not right I thought, I drove from Kansas City, gas, lodging...and I deserve my time with you.

In my final appointment, he said he would see me every six months for follow-up and imagining. He then left and his PA wrapped up. No explanation of the rationale for subsequent imaging if my PSA remained undetectable. When my wife and I left, found him out in the hallway joking with the folks at the appointment desk.

I have seen his latest three videos, personally, I like them. Many people seek consults with him for the same reason I did in 2017. If my PCa comes back, would I make the trip back to Mayo and Dr. Kwon...probably not. My reasons:

At the time, his C11 Choline scan was maybe the best FDA approved option and his thinking was an enigma to many in the PCa medical community (my perception). Frankly, I was way ahead of my medical team here in Kansas City about emerging treatments, when my urologist retired he said to me "Kevin, it is rare that I learn from my patients, but you taught me a lot." My radiologist completely changed her approach to listening to and treating PCa patients. Today, the recently approved FDA scans are more widely available, and my medical team here in Kansas City understands me, my outcomes I seek and supports shared decision making between themselves and me as an informed patient.

Kevin

Treatment Summary

[dhccpa in reply to Hawk56]

That's a hell of a (good) post, and an excellent summary of many of the trials and tribulations we patients go through.

I did have one question: how attractive were those young staffers at the appointments desk outside Kwon's office?

[Hawk56 in reply to dhccpa]

Average...

[Grumpyswife in reply to Hawk56]

It’s strange that my husband had two choline scans at KU as part of a trial about the time Dr Kwon started them at Mayo. We drove there from Minnesota right past Mayo as my insurance denied coverage at Mayo.

[Hawk56 in reply to Grumpyswife]

Yeah, one of my four scans was denied by insurance. I appealed and won, citing NCCN guidelines.

At the time I went to KU their cyclotron was broken and the Chief of Urololgy didn't really seem interested, he was a standard of care guy, my PSA meant to him that I should be on mono therapy , ADT, snd imaging would not change that so why image!?

[Grumpyswife in reply to Hawk56]

We had a local MO here who didn’t believe in scans and never ordered any scan in 4.5 years of seeing my husband. Regret not dumping him after the first visit.

[myskunkapeh8su in reply to Hawk56]

This is my first visit to this site so I hope I’m doing this right.Hawk56, who do you see at KU? I’ve been going there for the past couple years and have thought, same as you, that I should be receiving more aggressive treatments but haven’t gotten anywhere with them yet. I’m metastatic but have undetectable PSA with the current treatment so I can’t really complain but have felt I haven’t always being listened too.

[Hawk56 in reply to myskunkapeh8su]

I don't currently see anyone at KU, in part when I saw Dr. Thrasher, Chief of Urololgy I said this is not the place for me if the department head thinks like that. I do have a friend being treated there who recommended his urologist but I said I was good for now.

I see a Dr. Hettinger at Kansas City Urololgy. He has not battle tested yet but so far, we are in sync, he's not anxious to pull the trigger on treatment, doesn't react to a single data point snd respects my involvement in the decision making process and knows I stay abreast of the evolving landscape of advances in treatment of advanced PCa, hormone sensitive.

Kevin

[slpdvmmd]

I just saw Dr. Kwon this week. I think he is credible and my interaction with him as a patient was uniformly positive. IMO he is exactly what is needed in the prostate cancer community as well as other forms of cancer. As has been said he is willing to think outside the box and has been a leader in a more aggressive approach to oligometastatic disease which I think was redefined by his push for early PET/CT. The use of PSMA PET/CT earlier in disease overseas I think adds support to his hypothesis as does the advocacy for and adoption of more aggressive oligometastatic care we are seeing in this country as PSMA PET is becoming more available. I think the weakness of his program is being wedded to Choline PET/CT. This weakness is a universal problem in health care in the US (can't comment on the rest of the world accurately) where what imaging or other resource exists in the institution or system you are locked into by insurance, in-ability to travel, and finances is what becomes the "SOC" you are treated with. The future IMO will probably be multiple forms of PET/CT at the time of diagnosis as well as during the treatment/monitoring phase of patient care in prostate cancer. The hurdle for patients will be gaining access to these multiple forms of imaging.

[leebeth in reply to slpdvmmd]

It’s just strange that he sticks to choline when they clearly have PSMA scans. 🤷🏻‍♀️ He does order PSMA sometime. I am just not clear on that decision process.

[slpdvmmd in reply to leebeth]

My simple view is choline is metabolically based and psma is surface marker based. This may help explain. ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to leebeth]

Maybe he can read them very accurately because he's been doing it for years with that particular scan. It may not be "because it was expensive" or other ideas above. Hopefully someone can ask him the next time they get a scan at Mayo and report back.

[Hawk56 in reply to Hidden]

Mayo has invested heavily in the C11 Choline, it's cyclotron and experience in administering and reading the scans.

My understanding is for patients with recurrence, Mayo wants your PSA to be 1.5 or higher for them to accept you (was 2.0 in 2014...). At that PSA the sensitivity of the C11 Choline begins to match the recently approved PSMA Gallium,, Aximun and PCyL scans.

So, if that is the case, would make sense. Of course, doesn't answer the question of what if my PSA is below that...?

[StePeteMN in reply to leebeth]

As I wrote above--my two scans, the C11 and the PSMA a couple of weeks apart, looked almost the same. C11 showed some things that were not on the PSMA, too. The value of the PSMA scan for me was it showed that I have a lower level of PSMA avid-ness. The C11 experience is quite efficient at Mayo as they grow their own isotopes upstairs. I don't buy the sunk-cost reasons for continuing to use it. Kwon told me early on that if I need a different scan I'd get it--and I did.

[j-o-h-n]

Easy as Kwon, two, three.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/12/2022 3:08 PM EST

[bean1008]

A friend just diagnosed had his initial appointment recently with a respected local surgeon as he has determined that he would like to have RP. I made the suggestion that he should have advanced imaging done prior to his surgery and that he might suggest the same to the surgeon. The surgeon didn’t seem interested. As someone who has had two PSMA PET scans there is no way today that I would go into my initial surgery without having one.

[Tall_Allen in reply to bean1008]

It isn't covered if you're not high risk. And then, it's use to rule out prostate treatment.

[bean1008 in reply to Tall_Allen]

14 of 15 on his biopsy and assumed to have left the capsule. With what I know now I’d be demanding it…but it’s his road to take and I’m on that fine line of trying to be helpful without being overbearing.

[Hidden]

Kwon walks the walk, one of the best out there. A few wannabe internet doctors with a personal vendetta against him will tell you otherwise. Remember one thing, all the money in the world can't save you when your cancer decides to take you down.

[StePeteMN]

I've written about my experience with EK several times. Can you find my comments? I respect him and his work. A lot.