I'm wondering why my oncologist at U of M, (Sylvester) and my second opinion at the Moffitt Cancer Center....both said after Lupron for 10 months and 6 session of Taxoter..I'm doing so great...all of my bone mets disappeared and the few lymph nodes have either disappeared are are almost 1/2 their size...instead of wanting to create a "durable remission/cure"...they told me "you're doing great..stay on the Lupron and when the PSA goes up...you'll start Casodex". Seems like I could have lymph nodes removed..like the people mentioned in this video...my doctors said NO...that's it's stage 4 and too late for that? WTF? Anyone know about further things with Dr. Kwon? I wish I could go to him...(sad face). Both my regular oncologist and my second opinion..said how GREAT I did and how I am in a "very good place"...after this treatment, but neither gives me "long term" hope...just short term. Anybody know anything about this? Or Dr. Kwon?
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greatjohn
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This has unfortunately been posted several times before. I think Kwon had good intentions but ultimately does patients a disservice by not making clear that he is only expressing his opinions up until the very end, and presenting all these "gee whiz" cases without balance or explanation. I can only emphasize the importance of getting information from reliable sources (i.e., high level-of-evidence publications in peer-reviewed journals rather than random places on the internet and youtube videos).
• It was a presentation to patients, not doctors. He is obviously trying to give patients with metastatic disease hope. If he went further than the data allow, his heart is in the right place. As he stated at the end, he was offering his opinions, not facts.
• He showed a score of before and after PET scans, showing how radiation or surgery can result in excellent local control of detectable metastases. PSA disappeared along with the mets, as we would expect. Ironically, he started the presentation with half a dozen cases where patients died despite no detectable PSA, and said we have to be cautious about using PSA as the only tool to monitor progression.
• In all the cases but a couple, he offered 2-year PSA control as the outcome. Two years is not enough. Metastatic progression is almost always slow at first.
• Case studies are very useful for forming hypotheses. Pubmed is full of case studies of "miraculous" remissions. Kwon did not show the cases where it didn't work, except one. This is where science comes in - observations like his have to be tested in randomized clinical trials. "Gee-whiz" presentations are exciting, but what we want to know is if it really works, how much it works, and in whom it works.
Oddly, I have not seen any announcements of a such a randomized clinical trial from the Mayo Clinic. Last year, they began a non-randomized trial in castration resistant men, but that's all I've seen from them so far.
There is one at Johns Hopkins that uses their DCFPyL PET for early detection, and they expect to report some preliminary outcomes as early as next year. Unfortunately, it is a small study and not long-running enough to detect survival differences. Here is an article about it , if any are interested:
The results of the first randomized trial (in Belgium) were recently released. It was just a pilot study. They accepted 80% confidence instead of the conventional 95% confidence, and they set the bar higher for the control group than the treatment group. Even so, the results were far from impressive:
Other randomized clinical trials are ongoing in London and Montreal that will have larger sample sizes and are scheduled to run long enough to detect survival differences.
You may be interested in the following article, which discusses how some doctors incorrectly state their findings and mislead patients:
I still admire and respect Dr Kwon's aggressive attempts to stamp out the cancer. Too many doctors have the attitude -- oh well, you're screwed, we'll apply palliative care and make your existence comfortable until you croak. We need more doctors like Kwon.
I wish I could go to Mayo Clinic...my insurance is a local South Florida based HMO with SS disability....I may look into something different at next renewal window.
Too many patients form their opinions about other oncologists based on the publicity-seeking ones. For every youtube gee-whiz presentation, there are dozens of doctors working on the cutting edge of REAL medical advances for prostate cancer. Just because you don't know them doesn't mean that they're not there. They certainly are at the larger teaching hospitals.And the cutting edge treatments are given in clinical trials. There are literally thousands of clinical trials for prostate cancer.
yes...I'm at University Of Miami (Sylvester Cancer) which is part of the University...so he did give the course of action that I had hoped for from my research (and on here)...AND, since I went to the Moffitt Cancer Center for a second opinion, the oncologist there says I will be in the system when I qualify for any of the trials that they have.
Both are excellent institutions with well-deserved reputations. And don't feel limited to clinical trials only at those places. Many clinical trials will take outside patients. There are some great ones at NIH which are free, including transportation costs.
THANKS...both of the doctors I saw said I was "too early" for any clinical trials but I have signed up with "Driver" and brand new group that matches patients with studies...they take ALL of your records and tests and feed them into a computer base so that they match you to all studies going on....they notify you...and give you the details so you can decide about trying.
If you're metastatic and still hormone sensitive, some of these clinical trials in the last paragraph may be appropriate for you (some are for newly diagnosed, others not):
thanks, I looked quickly, but will look some more. I started Lupron about 10 months ago...and just finished Taxotere. I assume I am still hormone sensitive. I went with the doctor doing Taxotere based on the Stampede Trials I had read about. Thanks again,
Or you can look at it this way.....It's possible there could be more men cured of this disease if the general consensus amongst doctors was to go after this SOB of a disease instead of just buying time until it's to late for anything other than HT.
There is growing evidence that practicing an aggressive approach is doing exactly that and The Mayo Clinic is one of the ones blazing that path. In 1941 a doctor figured out that castration will slow down the progress of prostate cancer. This practice is still being used 77 years later. The only thing different is new drugs making it extend life longer. Some guys are okay with that and some guys are willing to do whatever it takes to get it gone.
If there was a way to figure how many men would have beat this with aggressive therapy that statistic would be staggering. I have read about men as recent as 2 years ago that had surgery aborted because of disease found in lymph nodes. Today there are finally doctors using the word cure with a Stage IV disease. We need to embrace that and get out of the dark ages. Prostate cancer is treated under a standard form of care because most doctors will not break out of that vicious cycle. Most men trust their doctors and don't know any different.
Todays treatments can consist of early chemo, new drugs and Doctors that are setting a new standard of care. Most of these treatments are recent and what some doctors are willing to try are years ahead of the 10 year wait of a clinical trial. With Stage IV cancer there is no time to wait. Paradigms are changing and thank God for the Doctor Kwons of the world that are working towards a different way this disease is looked at in it's advanced form.
Agreed there is no scientific proof about much of the new forms of treatment. We need to understand every situation is unique and getting to the cancer before it's castrate resistant and weak is going to offer best chance. However if we are not given a chance to try new options the thought will always remain the same. Lets see what the future brings with multimodal treatments. If your not happy about your current doctor's approach seek another opinion. If you want cutting edge it's going to be a major league facility. It's up to you to make this happen.
I believe Horst Zincke a surgeon at mayo showed better survival with rp in lymph node positive patients over 20 years ago, and as you say , even now they sometimes close a guy up when they find positive Lymph nodes, again it was Mayo then, and Mayo now. One must advocate for themselves. Zincke also showed by doing an rp on lymph node positive patients , that it significantly increased their time to hormone resistance as opposed to men who had no rp, that is documented by clinical trial over 20 years ago at Mayo in Rochester.
Kwon is a salesman for Mayo's Choline 11 Pet Scan and never met a patient who does not need one. I actually made an appointment after watching that video...after spending $3000 on plane tickets and hotel and waiting 3 hours in the waiting room my name was called...who walks in...not Kwon but this wise ass PA...Kwon finally walked in smiled, shook my hand and said come back when your PSA is 2...why you lousy MF why didn't you tell me that on the phone
I went to the Mayo because of this video and was never offered a Choline Pet Scan and they told me up front it is done only when PSA registers 2 or higher. Mine at the time was .51 so just the routine scans were done. I was offered surgery by them when 4 other doctors told me that it wasn't an option. I came out with a PSA of <0.01 and scans showing no evidence of disease.
They performed a surgery on me that no other doctors were willing to touch. They did an extended lymphadenectomy that radiation could not reach and removed 42 nodes. I will be forever grateful they gave me a chance when no others would.
Wow...you're story sounds like what I was hoping for me ! ! ! My PSA is only 1.1 but I had a petscan (Axumin) is that the same as a "choline" pet scan? This IS ALL sooooo confusing.
well, David, my first pet scan was another older one..it showed nothing. I got the Axumin scan done at University Of Miami (Sylvester) when they FIRST got it available about a 13/14 months ago...that one showed about 8 spots on pelvic bone...and about 7 or 8 lymph nodes in the area. After 10 months of Lupron and 4 months of Taxotere....my scan showed no bone mets (and this was the Axumin) the lymph nodes were either "clear" or had reduced by almost 50%. My PSA at the time of scan was 1.3
my local oncologist says I'm "good" and should stay on Lupron and wait and see how PSA does...
I went to a second opinion at the Moffitt Center and that oncologist said the same thing....he said I was in too good of a place for any "trials" and that I probably had 5 years before anything major would happen....
I just posted this because I was hoping (as some have) to find people who have had lymph nodes removed and gotten a more "permanent remission"....oh, of course, I'd prefer...a cure. Just turned 61 and really just got to my "happy ever after place"..LOL..3/4 retired and with a comfortable life and a partner (of 40 years already) and a puppy ! ! ! Life is Beautiful....and I want to LIVE. ! ! !
My husband had pCa positive lymph nodes surgically removed from his lungs. That bought him about 15 months until more appeared. He does not want to have another resection. So far the only option we have been given is systemic treatment-Xtandi with ADT. I was hoping for a targeted treatment like Dr. Kwon speaks of (whack a mole) but haven’t found an oncologist who agrees.
I go to a hospital that is affiliated with Mayo. There treatment was similar to yours. 6 rounds of chemo, lupron and Xgeva,then Xtandi. Same prognosis, I will die from this cancer as there is no cure, and surgery is not a option . 😢😢😢😢
You will die WITH this cancer, but you may not die from it. You MAY get hit by a beer truck. Who knows?!?
All any of us can do is the best we can do; one day at a time.
My Joe and I are grateful for every day we wake up on this side of the dirt. We try to make the most of that particular day. We pray a prayer of gratitude, ending with a request for just one more day.....each day.
God bless each and everyone of us on this site. We are trudging this road together, though far apart. I, for one, appreciate each of you more than you can know.
Well said, I thank the big guy every day for giving me another sunrise. Fighting everyday, scared to death. Tomorrow is my 6 month scans and will meet with my oncologist on Tuesday. Good luck to both of you 🙏🙏🙏
At the very least we have dr kwon we have dr kwon at the at very late stage when all else have failed that our present mo or we have tried and he still offers hope. He certainly was ahead of his ahead of his time in aggressive treatment early on .
Metastasis-directed therapy has been going on for a long time - going back to the late 20th century at least. The problem is that, even two decades later, there's no proof that it accomplishes anything.
I had my prostate and several affected nodes radiated about 3.5 years ago using IMRT. My radiologist hit as many nodes as he could without risking damage to organs. So far so good, PSA, still undetectable at my 4 year anniversary. I had chemo and remain on triple ADT since DX. Am I cured? Doubt it. I'm just hoping I've beat it into dormancy and that it stays there for a long while as new treatments enter the market.
I'd just be very cautious. There are a lot of snake oil salesmen running around and people like me who've been told there is no cure are prime targets. I'm a cynical old SOB and whenever someone starts talking money I get suspicious. You should also.
My husband has metastatic lymph nodes in his chest. When asked if they could be removed or radiated, we were told no. There are other ways to treat the lymph nodes and surgery is invasive. Radiation would like burn too many other organs - as was done when they radiated his pelvic floor in 2010. Diagnosed and prostatectomy in 2009)
He did Taxotere and Lupron in 2016. PSA has continued to creep up slowly while still on Lupron. He’s starting Zytiga next week, along with Prednisone, and will stay on Lupron , too.
He will have genetic testing to see about PARP therapies in the future. He did so well on chemo that it’s still an option.
Lots of life to look forward to!
The video appears to be from 2014. SO much has changed since then!!!
This forum suggested skipping Casodex all together, but I think if it works - and you don’t have to supplement it with the prednisone Zytiga requires, it might be worth a try. Know that it can take 4-6 weeks to work, so don’t be alarmed.
My Joe’s PSA kept going up on it, hence the switch to Zytiga,
My hopeful use of the radiation for the 2 lymph nodes in my abdomen and one small spot on pelvic bone....took my PSA down a lot...from over 6 to 2.1. However, the very next month it started creeping up again...up to 2.65 already just 3 months or so later. My PSA has helium in it....LOL. NOTHING holds it down low for long. I did great on Chemo when I did that...but within 30 days of my lowest (1.83) it started right back to "up up and away".
Feeling pretty great, other than fatigue and heat and weakness at times....no severe pain anywhere ...so I feel blessed.
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Duration of ADT
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