Finally Had First Treatment for Advanced Prostate Cancer

[Brent13]

I live in Nebraska and was diagnosed about a ago with Prostate cancer and numerous bone METS. I posted and listened to the many experienced like diagnosed brothers on this site. It was sad but reassuring to know that I was not alone and that others had or were going through what I was. After processing the information I decided to try to get to a doctor named Eugene Kwon at the Mayo Clinic. I had an appointment with oncology but not Dr Kwon in urology. This my suggestion as a newbie is, BE PERSISTENT. I decided to just go to his waiting room and wait for a cancellation or open slot just to talk to him or his nurse. Surprisingly he saw me and we cancelled the oncology appointment. After Blood work, (PSA increased from 350-440 in a month), MRI and attempt to get a C-11 Cholene PET scan he decided to not wait any longer for treatment. So Phase 1 was a loading dose of Fermagon, scheduled chemo at Buffet Cancer in Omaha of Taxotere then return to Mayo for C-11 Cholene scan and reevaluation. Dr Kwon called me on Sunday to make sure I understood the plan and to answer any questions. He also gave me his home phone number. Thank you all for your suggestions. Finding a caring knowledgeable doctor to coordinate treatment is very reassuring. I will continue to look for direction on this site. Brent

[teamkv]

I am seriously impressed with your just going to his office and waiting!! Great job.

[Brent13 in reply to teamkv]

I didn't think I had anything to lose. My wife and I were on the elevator and she said Dr Kwon or oncology? So we took a shot.

[Darryl Partner]

well done!

[bitittle]

Well done “brother”....stay after it! Remain persistent. “Never give up, never ever give up”....Vince Lombardi.

[Dayatatime]

Making things happen for yourself is huge in this disease. No body cares about you more than you and determination and will power is every bit as important as anything with this disease. Great job and keep pushing through.

[Cmdrdata]

Persistent and knowing what you want is the key.

[Fairwind]

They are doing a "Vision" trial in Omaha..NCT03511664..Uses a radionuclide Lu177-PSMA Some guys get spectacular results..

[Brent13 in reply to Fairwind]

Thanks, I'll Check it out on Thurs.

[Hidden]

Hey Brent, I am also from Nebraska. Stay aggressive and be positive.You have taken a big step forward Bro, fight the fight.

[Yarbo3]

I had a lymph node dissection done by Dr. Karnes at the Mayo. I was truly impressed by his skill and the feeling of the Mayo. Thank you for posting your experience with Dr. Kwon. As my disease progresses I will likely see him as well, as I now yet another positive reference of him.

A big part of the work in dealing with any health issue I have found is finding the highest intelligence you can to help you through. The Mayo seems to collect very good physicians that are drawn to its ethical structure.

Good luck Brent 13!

[Litlerny]

Brent,

Sorry to hear you have the need to join us, but welcome to the club. I admire your persistence. Dr Kwon is one of the best... very highly regarded, and knowledgeable. Actually, I don’t think you could go wrong with any of the PCa oncologists at the Mayo, but ya’ dun good! Dr. Kwon created the C-11 choline scan. As busy as he is, I’m pleasantly surprised that he took the time to call you, and give you his home number. Very reassuring! You’re in good hands. Up front chemo with docetaxel, and using a LHRH agonist like Firmagon is a good choice. Firmagon usually has to be injected more often than Lupron/Eligard et al, but doesn’t have the testosterone “flare” that they do, which requires concurrent use of a LHRH antagonist like bicalutamide to prevent the flare.

Please keep us all posted on how Dr. Kwon proceeds with your treatment plan. You’re off to a good start!

I might add to your “be persistent” philosophy, “be aggressive” and “be positive.”

[GaryG1950]

Hi Brent - You may not realize one of the top Prostate Cancer experts in the world is based in Omaha. If you want a second opinion on your future treatment plan or to find out more about the 50+ prostate cancer research trials they have in place, you may want to contact Dr. Luke Nordquist at the Urology Cancer Center in Omaha (gucancer.com). They are also one of the few places in the US that are conducting the Lutetium clinical trial....in fact, Mayo has been sending patients to them for enrollment. They have worked with Dr. Kwon in the past and I'm surprised he did not refer you to them. I would suggest you stop by their clinic some time and just talk with them.

[Brent13 in reply to GaryG1950]

Thanks Gary. The first time I went to Omaha I asked about Dr. Nordquist because someone posted his research on this site. However when I inquired with urology about him they kind of shrugged me off. I will be more persistent this time.

[GaryG1950]

Welcome to the world of politics and medicine where pts are not referred to the very best option but rather are directed according to business or political reasons. It is very discouraging to see this happening and it is not just in prostate cancer or Urology. It seems to be pervasive almost everywhere. It has happened to me personally all too often, especially in the past 10+ years. Patients are directed to specialists on the basis of the referring physician's personal or business or employer best interests, not according to the best care available. Extremely frustrating. You are truly left with having to do your own research and finding the best alternative. How crazy is that? Another thing you can do is check out the comments from Dr Nordquist's past patients on Vitals.com. You will find hundreds and hundreds of extremely positive reports. Then go search your physician(s) doing referrals and see what's listed. It can be an eye-opener.

[Boywonder56]

Your persistence and tactfulness is admirable too bad we have to resort to such steps hope everything goes in a rightful manner

[Brent13]

I want to thank everyone for suggestion to see Dr Luke Nordquist in Omaha. I contacted Dr Kwon's office at Mayo and got an expedited appointment for this Friday. So I'm seeing some people at Buffet Cancer center on tomorrow and the next day Dr. Nordquist. I hope from there I can decide who and get Chemo going.

[Hidden in reply to Brent13]

My husband and I have been traveling 9hrs (one way) to Mayo/Dr. Kwon for the last 4 years. I believe that the Choline PET scan combined with Dr. Kwon's treatment plans have extended my husband's life (suggested he had 2 years at diagnosis, now on almost 6). The travel has been expensive and tiring but the options (the C11 scan, specialists in radiation) have been greater than what we had available in our hometown. We have also worked out a team plan with our local Oncologist so that if a treatment suggested by Dr. Kwon can be done closer to home (Chemo) we are able to do it. If you are able to get started with your plan with Dr. Kwon (he's the real deal from our experience) and then continue with the recommended Dr. in Omaha you may have the best of care for you figured out. Persistence, patience, minimum of moderate exercise daily/forever, a nutrient dense diet - whatever that means to you:-), talk support with those closest to you, understand the possible side effects of every treatment that you say yes to and do your best to be in your healthiest condition to counteract the possibilities - hopefully you will retain quality of life through most of it and be able to endure the not so great days. All the best to you and those closest to you!

[j-o-h-n]

See your persistence Kwon the day....

Good Luck and Good Health.

j-o-h-n Wednesday 10/03/2018 6:05 PM EDT

[Brent13]

I had a busy weekend meeting with a Radiologist and and Oncologist at the Buffet Cancer center. I was impressed with Dr Benjamin Taply the Oncologist, Harvard, John Hopkins trained. And in a short story, agreed to get 2nd shot of Firmagon and start Docetaxel on the 30th of this month

. I then met with Dr Luke Nordquist an Oncologist focused on immunology he trained under Dr Scher at Sloan Kettering at his private practice. He spent 2 hours with my wife and I and explained the historical, current and perceived future of treating and possibly curing advanced stage prostate cancer. We also spoke about the onsite research center that has more current trials going on that any other location including Mayo and Sloan. (I would guess has nothing to do with quality but the many less"hoops" to jump through outside of a teaching hospital setting). I have a PhD in Human Physiology and My wife a Doctorate in nursing and we still felt his every word had value and purpose. I was impressed enough with his expertise, general approach and willingness to collaborate with Dr Kwon at Mayo that we cancelled the Buffet Cancer Center appointment and started Taxotere Chemo that afternoon and will get a Lupron shot with next Chemo in 3 weeks. I feel Dr Norquist coupled with Dr Kwon will cover as many of the bases I know of at this point in the exploration expedition we all are forced into. I truly thank all of you that have commented on my questions in my posts because I would not be where I am today or have my current sense of calm without all you brothers out there. Brent

[Kcski in reply to Brent13]

Hi Brent,

It has been a comfort and relief to find you and your story as my father (72 yr old and from Nebraska) is going through a similar scenario.

I also send you good vibes and prayers/hope for remission.

He has advanced prostrate cancer (stage 3.9) that has spread to some local lymph nodes. Currently he does not have bone metastasis.

He had swelling and pain in his leg for several months and thought it was a soccer injury. Then symptoms progressed (increased night urination, ED) his PSA was checked and marked at 6,000+.

I found Dr Kwon on YouTube and was extremely impressed. Btw you are amazing to go to Mayo and see if he would see you, despite the gate keepers saying he was booked. I tried to get him to go, but he had been given three doctors by his urologist and he chose Dr. Luke Nordquist.

Dr. Nordquist has been great. He makes time for us, is kind, and truly wants us to understand everything going on in my Dad’s body.

He started my Dad on Chemotherapy (Taxatore) for six cycles. His last cycle was just given and now we have to decide on the next step.

From what I have read/researched Immunotherapy is the future and offers in rare cases a potential remission. I would like to see my Dad move to Immunotherapy.

Dr. Nordquist feels that my Dad should move to Zytiga. We talked about this and he tried to explain, but I had to leave bc of the babysitter and I did not fully understand why he wanted Zytiga before Immunotherapy.

I have read that Immunotherapy makes everything work better.

Can you share your treatment sequence and how you feel about it?

Were you able to join a trial at Dr. Nordquist’s office?

Did Dr. Nordquist and Dr. Kwon ever differ in treatment sequence?

My Dad is fighting so hard. I will feel great regret if he does not get the best/ideal order of medicine.

Thanks so much!

Sincerely,

Karyn