PSMA Pet reveals spread to bones, lymph glands

Islandboy said: "His office told me if I start Nubeqa before I come visit, that will make the blood work less meaningful/accurate for his purpoases and thus pointless to see Dr. Kwon."

I'm not sure why Nubeqa would make that much difference since you're already on Eligard, but what do I know.

A "Rock Star" oncologist may or may not have an edge over a very good oncologist.

Quick Question ~

Your November 15th plans revolves around starting NUBEQA.

The website States that is for non-metastatic prostate cancer.

You have metastatic prostate cancer, which was part of my original diagnosis.

Maybe NUBEQA's uses have expanded?

I wonder if PLUVICTO (Lutetium-177) treatments are appropriate for your case?

Dr. Kwon is known for formulating individualized chemotherapy mixtures, blended in powerful ways.

Just a few more thoughts ~
CYCLONE ~ # Iowa State University

I believe the FDA approved the expanded use earlier this year. All the feedback has been very helpful and I will try to create a communication channel between the docs and assess the risk of waiting until I hear from Kwon — hopefully I can get in front of him sooner than later. Optimally, I can get input from Kwon before I make a decision on a treatment plan.

I talked to Kwon this am.
Bottom line, he is wondering why I’m not doing chemo yet.
Said he would recommend taxotere plus carboplatin, do three rounds, then do another PSMA scan to see how it's doing.
He thinks my cancer was probably metastatic when I was first diagnosed in 2019 and docs should have picked it up back then with 21 out of 21 cores testing positive, and the Gleason scores I had.
He said they should have used the PET scans from day one.
That's water under the bridge, but it means that I'm playing catch-up and I don't want to continue to make the same mistakes of underestimating what I've got inside of me.
Kwon recommends Guardant 360 genetic blood test, with reporting of TMB.
Says Nubeqa probably not very useful and it’s just wasting time.
He recommended that I first talk with my doc here, but if there's any resistance to these ideas he suggests I do my chemo at MN Oncology in Maplewood, with Dr. Vladimir Hugec.
I asked about my prognosis.
He said the good news is that there is a lot of soft tissue disease.
He said if we jump on this, get aggressive with chemo, we can “shave it down” and then point me to Lutetium 177.
“There’s an outside chance we could whittle this to nothing.”
He said, “Sequencing is everything” and “It’s time to reshuffle the decks.”
He’s willing to take me on, chemo treatments in MN…would take some travel, but I like his attitude, energy and urgency — something I’m not getting anywhere else. Interested in feedback. I'm inclined to move forward and get this aggressive treatment underway and I really like Kwon's attitude towards all of this.

Hello, Island ~

You already know that I met Dr. Kwon in 2015 & he doesn't run away from challenging cases.

He takes an aggressive approach, when needed. You and I both row together in that same boat.

He is avant-garde. I think of him as a "maverick" ~ in his approach.

He is famous for saying, "If we keep doing the same old things, we are going to get the same old results."

He doesn't throw protocols out the window ~ he pushes available treatments & sequences them & layers them in new and innovative ways.

You have a plan put before you.

Get the ball rolling, make the arrangements, book the appointment, get the travel bag ready, and get ready to fight cancer.

Reach out to your local doctor, but don't waver from your belief in this new plan.

I told my local doctor, "I have a new plan ~ through Dr. Kwon ~ and will need your ONGOING support, as I embark on these new treatments."

I told you Dr. Kwon is famous for his chemotherapy "cocktails."

I have traveled to Mayo Clinic. I book the hotel, pack the bag, make the arrangements, and hit the road.

I always say, "People travel thousands of miles for concerts & sporting events. Why wouldn't I travel to Minnesota when my LIFE is at stake?!"

I can sense your excitement.

You have been PROACTIVE, and that's what it takes to get an innovative plan of action going.

Dr. Kwon just energized your treatment plan! Hurray!

Keep in touch. I am rooting for you, beyond all words, Island!

CYCLONE ~ # Iowa State University

new treatments PLUVICTO and lutetium-177-PSMA-617, or LuPSMA,


New on the scene so hope not jumping on toes. First treatment matches your case as a hunt and find treatment. Read up on them and discuss with docs. Hang in there. Stay off carbs and sugar, fuel for cancers. Also grapefruit juice.

Wow, you are pulling a plan together fast. Sure beats waiting and worrying… You will miss the great weather here this week but no snow for a while I hope. Will get below freezing at night later next week so dress accordingly for 40 deg days. Not the best time for sight seeing but it is not a snowy mess yet either.

Your hotel is two blocks north of US Bank Stadium (Vikings) and about 3 blocks south of the Mississippi River. The actual downtown area is about 8 blocks to the west. There is a light rail system between Minneapolis and the airport and Minneapolis & St. Paul. There is a close LRT station by US Bank stadium. The University of MN is a few miles to the east on LRT. The drive to MN Oncology is about 20 minutes, maybe a little longer if traffic is bad. Rochester is about 1.5 hours to southeast.

Lots of folks can help you with chemo advice, search for Taxotere (docetaxel) and carboplatin. My wife’s chemo experience was almost 20 years ago and she had most of the side effects at some point. I would like to think it is better now but it sure seems similar to me. Fluids are really important so keep well hydrated.

Cyclone, what a resource…appreciate the thread and, particularly, your detailed contribution. I have printed it out! Thanks, Mumbo, for the weather report. We will pack accordingly! Will keep you posted on how it goes.

Received my first treatment of Docetaxel + Carboplatin on 11/10 from Dr. Hugec at MN Oncology in Minneapolis. Am scheduled for six treatments (one every three weeks), with blood work and PSMA Pet scan scheduled at Mayo with Dr. Kwon for mid-January, after the third treatment. Also, will be administered quarterly shots of Eligard, and I will begin taking Nubeqa (darolutamide) this Tuesday. Felt great on Thursday, and also on travel days Friday and Saturday. Have begun Sunday with some higher than normal fatigue and aches, but am planning to get on the spin bike for a very easy ride, lift some light weights and go for a walk, as well as take some welcome naps during the day! During my Docetaxel treatment (the longest, at one hour), I kept my fingers, toes and mouth on ice the whole time and I believe that has helped me considerably. Also, a couple of days prior to the treatment (and since), I have been drinking 100+ ounces/day of water with electrolytes added (no sugar no flavor). I haven’t begun to lose any hair, and wondering when that might happen, if it does happen?