The Gleason 9 and 10 Crew - Welcome and how ya doin'? (Part 4, continued thread)

randyd said...
I don't care at all about any SE's I may have to deal with. For me anyway ADT = life.

I agree 100%. I had a booming headache last night at 10 and had to sleep in a chair til 2:15 a.m. Went to bed til 7:15 & took my zytiga. Went back to bed and slept til 9:15. The morning fog lifted about 1. That kind of thing happens every 7-10 days for me. I'm happy to be here posting. Every day is a great day, even crappy ones like today.

Just left Dr. Sartor's office. Husband's PSA is rising on Zytiga ... so stopping the Zytiga and starting next week on Bipolar androgen therapy (BAT). High doses of testosterone given every 3-4 weeks. He has had some good results from 30 patients he currently has on it. Husband is really excited to get some more testosterone in his system!!!!

BOOKEND CLINICAL TRIALS- an update

Almost three years since initial diagnosis of metastatic G10 PCA. I started the journey with a PROSTVAC/docetaxel clinical trial at NIH, which, along with ADT, drove my PSA from 29 to 0.05 in 4 months. "Feeling lousy" and backache symptoms also disappeared.


But soon as the docetaxel stopped, PSA began to increase- castration resistant from the get-go. Through a number of treatments we slowed, and sometimes stabilized, PSA increase. Provenge, Xtandi, BAT, Zytiga, and lastly cabazitaxel- seems like I qualify as "heavily pre-treated" in the clinical trial setting.

My flavor of PCA is a bit unique in two ways- first, Gleason 10 (not so rare in this corner of the forum); second, having just completed multiple scans in the past month, I am still NOT carrying any bone mets (no visceral mets either). Everything is in lymph nodes. Now these can get pretty big, some are 6 cm in longest dimension, and I seem to get a new one lighting up each scan of late. Complications from this growth are pain and occlusion of ureters so far. I have bi-lateral metal ureteral stents in place, but recent bone scan shows right kidney to have minimal function- it gave out I guess, my left one is carrying the load for now.

I quit working as of last May, as pain episodes made me unreliable in lasting a semester of teaching. I finally gave up trying to spot treat pain with opioids 2 months ago and now take a dose every six hours regardless, giving much better control most of the time but not without consequences.

Each procedure, each therapy change, seemed to bring a decrease in function. Ran across the ACS website other day and amusingly recognized that I checked all the boxes for "symptoms during last few months of life for a cancer patient". Fatigue and weakness are profound. My appetite is poor. I have lost 20 lbs since 1st of the year. Pain is everpresent but managed. I "sleep" a lot. Can't seem to walk more than 20 yards without rest. Wear O2 most of the time as well. Life has become very narrow as I navigate from moment to moment.

So in this setting, a Phase III trial seems like a worthy gamble. It probably won't make things worse, and might give me some head space to bloom a bit with the blossoms of spring. Very fortunate for me that the VISION trial opened a site iup in Denver in January- I do not travel well these days, so proximity is required.

This is the trial where Lutetium-177 PSMA-617 is injected into a vein. The PSMA-617 binds to PSMA on the surface of PCA cells and the radioactive Lutetium is absorbed, hopefully killing the cancer cell. Radio Ligand Therapy (RLT) it is called. The control arm is best standard of care for comparison with the treatment arm, which is up 6 to injections at least six weeks apart. Patients are randomized to treatment arm at a 2:1 ratio.

I lucked out this time and will get my first infusion next Wednesday. This is a marvelous sliver of hope and none too late I must say. Collapse has felt imminent of late, but that feeling is more prominent when pain is ascendant.

I look forward to a marvelous spring and summer. I tear up for my brothers who did not randomize to treatment in this trial.

I will keep this thread updated on my trail adventures to come.

Luck and love to all-
rockyfords

Rockyfords,

As a fellow G10"er (with mets in my case) who may not be very far behind you, i just wanted you to know that you have my deepest respect and admiration. Your attitude and approach to this ugly disease are an inspiration to all of us.I wish you the very best!

Rockyfords,
All I can say to you is best of luck with the new approach and treatment. We are all pulling for you. God bless.

@rockyfords: Looking forward to hearing from you and best luck.

Randy,
I’m a little confused. Are your bone mets in the pelvic area and received radiation along with your prostate? Was the purpose of the radiation to reduce the primary tumor load in your prostate?

The clear scans may be because the ADT reduced the bone mets. In any case it’s all good news!

Great news Randy!

Hi Randy,

Your story is inspiring.

All the Bone Mets are gone, you didn’t do Chemo, but, HT and RT, it is incredible.

My MO told me I have more 5 Mets in my bones, I am going for Chemo this Friday. I wish and pray I am as luck as you do.

I wish I could get someone in Denver willing to try BAT....Here, it's in a clinical trial or nothing..The doctors are all worried about their malpractice insurance..I see where Rocky is doing the "Vision" trial, NCT03511664. That one holds some promise..I signed up for it today...It takes a couple of weeks to get the ball rolling..There are guys, believe it or not that are doing DIY BAT where they obtain the testosterone one way or the other and self-inject it...Their attitude is "at this point, what difference does it make ??"

Alephnull,
Sorry about the results. Since you’re going back on Lupron, I wonder if it would make sense to add Zytiga or Xtandi?

mattam,
My Onco has plans to do that but only when I become castrate resistant.

xtandi if no mets and castrate resistant
zytiga if mets and castrate resistant

I'm very thankful that Lupron has worked for as long as it has, but I know it will fail eventually. Probably sooner than later.

Alephnull,

Obviously, not the result you were hoping for but there is one slight flaw in your thinking that might make things appear worse than they are. You can't calculate a meaningful doubling time for a man whose T is recovering after ADT. T makes whatever cancer cells you have produce more PSA. It's not so simple but you can think of your PSA as varying with the product of your T and the number of cancer cells you have. If you hold T constant and the PSA goes up that generally means the cancer is growing, and the doubling time gives some measure of how fast it is growing. But if your cancer wasn't growing at all and your T started to come up from castrate levels that would make your PSA go up, too. What is probably going on is a combination of both -- your T is coming up, making the cancer cells you already had wake up, and your cancer is starting to grow. The next few months will give you a better idea of how much of which is going on.