New stage IV, Gleason 9 diagnosis

Reese and Will,
Welcome to HW and hopefully we can be of help on this journey. Will is pretty young for that diagnosis. I think Todd 1963 was pretty close to Will's age, so you might look at some of his posts. That might give you a better idea of what treatments are available.

Again, welcome to HW and I wish both of you the best outcome.
Michael

Cyclone-ISU was close to forty, Reese.
Michael

Sorry to hear about Will's diagnosis. Sounds like you are doing the right stuff. Kaiser may good or bad when it comes to getting the care he needs. Glad you went to CU for an opinion, options are limited in the rocky mountain region.

Dr. Eugene Kwon and now Dr. Oliver Sartor are at Mayo Clinic MN and some of the best known prostate cancer doctors if you are still looking for advise. You can look up videos by Dr. Kwon and Dr. Sartor on Y-tube

As others have stated, there are some miracle guys on HW that have beat the odds for years. The fact that the treatment is working is a great first step for Will.

I looked up Dr. Graham at CU and she became a Medical Oncologist in 2021. This can be a good thing with prostate cancer as she should be current on the latest developments although she may be lacking on the experience side. Does Kaiser include CU in their insurance plans? Where is Will going for treatment currently?

The key is for both Will and you to become well-versed on current treatments for Stage IV PCa so that you can have your question list ready for the doctors you see. Chemo + hormone therapy seems to be the current standard. If watch the videos, you will see that Dr. Kwon is very keen on imaging, imaging... Lots to learn but you will have time now that he is responding favorably to treatment.

Reese/Will - here are a couple threads by Islandboy that you might find good reading material. It is a fairly recent story so relevant to your situation.
https://www.healingwell.com/community/default.aspx?f=35&m=4305295
https://www.healingwell.com/community/default.aspx?f=35&m=4307870

Hi Reese, sounds like you are getting good care, but second opinions are always a good thing with this disease, as progress is always being made in new treatments. and to that point, when you watch videos and read about treatments here and elsewhere, always take note of the date, to be sure you are not getting information that is no longer the most advanced
Other than that nothing to add. Welcome to the forum and best of luck to you and Will. This disease, even when caught at stage 4, is most often very manageable as a chronic disease.

Hello Will & Reese ~

You've found a very supportive place here. I'm mindful of you both & your new diagnosis.

I was diagnosed out-of-the-blue in my 40s. I'm a school teacher & a new school year had just begun.

I remember the racing thoughts, worrisome fears, and sleepless nights. Sound familiar?

My PSA was skyrocketing up over 100, with each subsequent test. I remember the dizzying whirlwind of diagnostic tests and scans.

A very tough day was when scans showed that my prostate cancer had already spread ~ and both my lungs were peppered with cancerous nodules, confirmed by a lung biopsy surgery. My doctor didn't smile, and I stood there stunned, looking at those lung scans.

It was so unexpected, it all felt like it was surreal.

I knew I needed to get on my battle armor and walk out onto the battlefield. I felt VERY determined.

My treatments began at once, in the form of ADT shots. Miraculously, the first shot knocked my PSA down to about 30 the first month. I was JUBILANT! Subsequent ADT shots knocked my PSA down to single digits and then decimal levels.

My oncologist was stunned. It was the first time he smiled.

He explained that ADT shots were literally "starving and strangling" prostate cancer cells.

I loved that visual description ... cancer cells that were "starving and strangling."

I felt VERY fortunate to be in the first wave of fellows treated with what became known as the "early chemotherapy plan" ~ with six full-strength TAXOTERE infusions ~ given three weeks apart, over the course of 18 weeks.

The TAXOTERE chemotherapy infusions knocked my PSA levels down even lower.

Believe it or not, my diagnosis occurred nearly 10 years ago now.

As time went by, I was the first prostate cancer patient at my clinic to start ZYTIGA & have been on it for several years now. It was a newer breakthrough medication then. It's now in generic form - ABIRATERONE ACETATE. This medication has helped many of us here.

I have also traveled to Mayo Clinic, to consult with Dr. Eugene Kwon. Do not hesitate to seek out additional expertise for your case. Swing for the fences!

In consultation with a Mayo Clinic radiologist, in Rochester, Minnesota, they mapped out a series of radiation treatments for me, which I pursued at a local treatment center here.

Through it all, I have remained active. I continue teaching full time, I take daily trail walks, I volunteer often, and today a friend of mine took me on an airplane flight over the countryside and then we flew over the hometown where we both grew up, seeing all the town landmarks from the sky.

My lesson learned? Stay active, and keep living your life to the fullest. Remember the importance of family, friends, and faith ~ in whatever form that takes for you.

Your cancer diagnosis is now a chapter in your life, but it's not the title of your life story.

When I was first diagnosed, I was desperately searching for treatment success stories. My doctor told me I was his youngest prostate cancer patient, and I felt somewhat alone in my diagnosis.

Family, friends, and my students rallied around me. My doctors and medical team have been tremendous. This website was also a GODSEND to me.

I hope that my first-hand story will let you know you are not alone in your fight.

We are all here to rally around you both, Reese and Will.

Sharing MY sense of hope with both of you.

I always say that treatments are not always a "Sunday walk in the park" ~ but can pay untold dividends, in the long run.

I recently celebrated another birthday and another group of my former elementary students just came to see me at school ~ ALL of them in their senior graduation robes. What a great day - seeing them all again!

Your recent drop in PSA is stunning and absolutely jaw-dropping! I KNOW the elation you must feel! (When my doctor shares good news - I crank up the car radio on my drive home & sing every song!)

In fellowship ~ from "one brother in the battle" to both of you ~

CYCLONE ~ # Iowa State University

Hello Reese. No doubt that Will has been dealt a tough hand. But, as you can see on this forum, there are lots of guys still thriving many years after such a diagnosis so please keep your spirits up.

I know nothing about your doc nor the restrictions of your health care plan. What I do know is that Will needs a prostate oncologist who has a lot of experience with advanced prostate cancer. There is a somewhat dated list in the appendix of Dr. Scholz book, "Invasion of the Prostate Snatchers". Depending on your financial situation, it may make sense to at least consult a leader in the field so that you have confidence in the treatments.

Best of luck,

Jim

Hello, Will & Reese ~

A sidebar topic ~ not to be overlooked.

My local oncologist is also an expert in infectious disease.

Knowing that I am a school teacher, and that I have undergone treatments that have compromised my immune system, he has advocated the importance of making sure my immunizations and pneumonia, corona, and flu vaccines are kept up-to-date.

This is a great topic to pursue with your oncologist, and I thought I would share that idea with you, as well!

With my best ~
CYCLONE # ISU

ReeseforWill,
Reese, you appear to be a priceless advocate for Will, so great job so far! Welcome to the forum that you really did not want to join..as some have said . No poster beeter here to mentor you and reply than my friend Cyclone-ISU, Also Todd1963,keep them in mind. Also not to be overlooked ,on the forum page there are two "Pinned threads" at the top, we affectionately call them "stickynotes". See what the old timers and new alike have added.

Here's a different great thread, "Zytiga, Our collective Experiences";
https://www.healingwell.com/community/default.aspx?f=35&m=3862614&p=9

Also There is another very inspiring, uplifting message and post in a threasd called "Letters to the newly diagnosed". starte by Cyclone -ISU . I cant seem to find it at the moment by using the little search bar at the top of our page, or on the internet, but maybe Cyclone will chime in with it. It is my favourite thread.

As for me, slightly different circumstances then Will's, but DX with Stage 4, Grade 7, metastatic to bones in 2012. Zytiga has taken my PSA from 71.5 all the way down to undetectable, holding at near zero for 8 1/2 years now and counting. Hope is eternal, so stay strong, and keep the faith, as I like to advise.

Wings of Eagels aka Dan in So Cal

Will & Reese ~

Great to hear your series of chemotherapy infusions is "wrapping up."

At my treatment center, I got to "ring the bell" and everyone from my medical team clapped and cheered for me.

Looking back, chemotherapy treatments weren't a "walk in the park" ~ but I saw my PSA levels dropped lower with each subsequent infusion. I KNEW those infusions were working!

Looking back, I feel chemotherapy "set the stage" for the next step in my treatment protocol ~ the newer breakthrough medication known as ZYTIGA. As time went by, I went on it's generic version - ABIRATERONE ACETATE.

I save all my empty ZYTIGA bottles ~ as a way to visually mark my progress. Soon ~ and very soon ~ there will be 100 empty bottles lined up on that shelf.

I started ZYTIGA at the start of one of my new school years. The first 9 empty bottles meant a lot to me - because those 9 bottles meant ZYTIGA had carried me through an entire school year.

Stay strong, stay determined ~ one day at a time ~

CYCLONE ~ # Iowa State University

Hello, Reese and Will ~

As my chemotherapy infusions went along, the drops in PSA were still happening, but more subtle.

Unforgettable to me:

My oncologist reminded me that the LAST treatments had the hardest work to do ~ going after the toughest, most resilient cancer cells. The stubborn cells, so to speak!

Great brotherly advice that day. It gave me the fortitude to "finish strong."

I also felt, for my situation, chemotherapy weakened those cancer cells significantly ~ clearing the path for subsequent treatments to be more effective.

If you check your current "feed" on this website, you will see a tremendous thread entitled "TAXOTERE SIDE EFFECTS?"

Many of us banded together to create that thread. You will find it insightful, and ~ if you wish ~ you are invited to add your experiences to that thread.

Sending supportive thoughts to you both ~

CYCLONE ~ # Iowa State University