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

AlephNull,

I didn't mean to question your oncologist's expectations or advice. I was just pointing out that so soon after the cessation of ADT it is difficult to get much meaningful information from a doubling time per se. Your most recent six-fold increase in PSA brings you back to roughly the same level you were at in August 2017. If the next few month's testing shows that your PSA has resumed the same general trajectory it had in 2017 then you can expect your vacation to be brief.

My T recovery after two years of ADT was laggardly and ultimately unsatisfactory. After giving the recovery process over a year and remaining stubbornly hypogonadial I spent some time trying drugs that will sometimes encourage natural T production to resume. I tried Clomid/clomiphene (pills) and human hCG/chorionic gonadotrophin (injections) and finally wound up using a testosterone gel (which I still use). 9 out of 10 guys recover faster / more reliably than I did so I am a poor example of what to expect although with your T level only at 67 after nine months of vacation you may be slow to recover too.

One thing to possibly keep your eye on is the research on treatment of castrate resistant disease with suprephysiological T levels. The theory is that there is a range of T concentrations that that encourage prostate cancer to proliferate and that range has a bottom and a top. Most treatments for systematic prostate cancer try to drive T levels below the bottom of the range. This works for a while then castrate resistance sets in and the treatments become ineffective. Recently researchers have been looking at going the other way -- above the range. Several very small studies on men with asymptomatic castrate resistant prostate cancer have shown very significant responses to treatments with testosterone at serum levels much higher than is physiologically possible. There's still a lot of work to do to identify the best way to use it and to identify the subset of men it will help but there is definitely something there.

Just something to keep an eye on. It's a researchy treatment for castrate resistant men and it will be a while before it's ready for wider application. But you are still castrate sensitive with the first-line drugs so you won't be in their target population for a while yet either.

Here's a nice review article of which I can read slightly more than half: Supraphysiologic Testosterone Therapy in the Treatment of Prostate Cancer: Models, Mechanisms and Questions

---

65 Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012: 1&2 neg, 3 pos 1/14 6(3+3) 3-4% (2^nd opn. 7(3+4)), 4 neg
DaVinci 6/14/12. "some" nerve sparing on left
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
24 mo ADT3 7/12 - 7/14
Adj IMRT 66.6 Gy 10/17/12-12/13/12
8/2012-3/2015: Incont., Trimix, VED, PSA<0.015.
AUS & IPP installed 3/5/2015
Forum Moderator - Not a medical professional

UPDATE on Lutetium-177 PSMA 617 therapy (VISION trial)

As described in my previous post, this targeted treatment attacks PCa cells with radioactive molecules that bind to PSMA, get engulfed by the cell, and destroy the cancer cell.

My first injection occurred in early April, when I was weak, poor of appetite, losing weight, hardly active and needing oxygen when active, and round the clock opioids for pain, and not enjoying my days very much.

2nd injection was on May 23rd (every 6 weeks per study up to 6 injections) and I had my first trial scans last week (every 8 weeks for scans).

Results: I started feeling better in the first week. My PSA dropped about 7 points each week, from 65 to 16 in 6 weeks (IMPORTANT NOTE: I have read a lot of literature on these studies and one can have no PSA response on first dose follwed by good responses on 2nd and later doses). My scans were mixed, showing some stable nodes, some nodes and areas shrinking, some areas expanding....BUT my clinical response is very strong to this point. Gaining weight because I eat more, more active and not needing O2, stronger in rehab, reduced my pain meds 50% to twice a day, and what pain I do have is pretty low grade. My days are pretty good compared to the before picture. I enjoy them much. It is a good summer.

Side effects: dry mouth for first 7-10 days, not intolerable; some diarrhea about day 5-6; maybe some fatigue first few days.

I will get my 3rd injection July 3 and 2nd scans 4 weeks later.
Thank you to all who wrote encouragement after my last post. Best of luck to all who try for this trial. By my experience there is nothing of concern and good chance of relief in late stage PCa.

Sing while you can, as my friend Carmine says.......

rockyfords

---

Dx 62yo 3/16 PSA 19 G10 M1a
5/9 ADT PSA 29
PROSTVAC ADT chemo (x4) NADIR .05 10/4
5/2017 EBRT 37.5 Gy prostate hematuria
6/27 PSA 1.7 off trial -> Provenge
9/19 Xtandi: 0.85; 12/12 Xtandi fail
1/2018: PSA 2.5 ->BAT; 7/6 off BAT PSA 6
6/26 TURP
8/11 PSA 8 start Abi
11/6 PSA 29 fail Abi
11/16 ureteral stents
12/1 start cabazitaxel, fail in 12 wks
3/2019 PSA 51
4/10 start VISION trial

I agree with mattam. Those that participate in trials are heroes in my book. Thanks for doing that Rocky.

---

11/09 Dx at Age 44 ----- 4.03
12/09 DaVinci Surgery,t3b,g9 <.05
2/10 Adj. Radiation ----------- <.05
3/11 PSA Rise/Scans/Spot ---- .09
on Pelvic Bone
4/11 HT/XGEVA/Spot Radiation -- .06
2011-2012: ADT3: 15 months
2013-2015: ADT3 VACATION #1: 36 Months
2016: Spot on Rib; .07; ADT3; Spot Rad
2017-2019: ADT3 VACATION #2: 30 Months
2019: Same spot on PET, not CT; .60; ADT3; Spot Rad

Overall I feel great! I go to the gym twice per week and walk about an hour a day. Recent bone and cat scans are the same as they where 6 months ago. PSA has been creeping up, but M.O. is not concerned at this time. Doubling time is about 5 months.

---

Age 59 when DX
DX Nov 2016
PSA 350
Bone & Lung Mets
Lupron @ 90 days
Gleason 9 ( 5 + 4 )
Jan Chemo
2017 June .018 Sept .016 Dec .058
2018 March .320 June .81 Aug 2.6
Zytiga Started Sept Oct PSA 4.0 Nov 1.8, 2019 Feb 0.89 Mar, 1.1 Apr. 1.2
May 1.6 June 1.8

Rocky,

Congratulations on the results - just outstanding. Please keep the updates coming

---

Age at Dx:66
DRE - Negative
Dx: 10/23/18
PSA Initial 9.4, Retest 9.8
Gleason 10 with perineural invasion
3 of 12 cores Positive (1) 50% 7mm, (2) 20% 3mm. (3) 10% 2mm
Treatment
Casodex started 11/12/18
Eligard 6 month injection taken 11/17/18
Radiation treatments 28 rounds begun about 11/26/18
Zytiga and Prednisone started on 12/3/18
Xgiva begun 3/19
PSA
1/3/19 0.99
2/19, 3/19, 4/19, 5/190 =0.1

Is anyone having heard of ARV-110? Does it give a hope to us to cure?

There is a recent entry post on this drug in the "new" prostate cancer infolink. I mentioned it a few days ago, probably in a wrong thread about other relatively new drug. Hope this or something similar may be a real forward step soon.

Greetings to G9 bros,
Has been a while...new face-lift forum..great
I m good ..with recent blood check,,,undetectable
Wishing all bro...all the best...down the PC road

---

Age:66 PCA: 60
04/24/13 dx PSA 30.3 06/26/13 biopsy
5/10 cores positives G9
RALP 08/02/13. post path
Tumour : 5% on both lopes G:5+4= 9
PNI/EPE(T3) PT3A 29 lym nodes, nerve b'dles,
seminal ves removed neg negative margins
4th wk back to continent
3rd & 6th mos PSA<0.03
10.5Mos PSA 0.06
17.5Mos PSA 0.17
18.5Mos SRT (66 gy)
21 mos PSA 0.04
27 32 40 46 54 61 66 72mos PSA<0.03

Yaamba,
It's surprising to me no one responded to your post. I don't have any deep words of wisdom for you. Sometimes just getting it off your chest - like you did in your post - can be most helpful. I glad your husband doesn't seem to be in distress, and I hope it remains that way. I hope you have family or friends for your own support.

Let us know how things go. Hope you and your husband have an enjoyable July 4th.

---

Part I
2015 (Age 54) PSA: 20.8
Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase until 2019: 64

Part II
2019, March: Lupron/Xtandi, PSA: 0.036

How am I doin? 18 months now of undetectable! All other blood work doing great too. I pay a price with my side effects but I am starting to feel the best I have in months. Looking forward to smelling the roses this summer. And some Handel's Ice Cream tonight!

---

Dx 5/18/17
11/12 cores 2 4+4
RALP 7/27/17;3 pos nodes
psa post op 0.15 to 0.28
scan=multiple bone mets
Clev Clinic ups to G9
CClinic MO+my MO say ADT+Zytiga+Pred
lupron 11/17/17
zytiga 12/15
psa 12/28 0.03
4/4/18=<0.01
7/3=<0.01
stop Zytiga 7/16 bad liver #'s
9/11/18 restart Zytiga 1/2 dose
10/5=<0.01
10/30 start 3/4 dose
1/19=<0.01
4/19=<0.01
7/19=<0.01

UPDATE on VISION trial

I am tracking PSA response to 177Lu-PSMA therapy in my signature. My clinical response has been very good but not steady up. 10 days before and after 3rd dose, I felt like a return to pre-trial days. Cleared up pretty good though on 11th day. While post 2nd dose scans were mixed, scans post 3rd dose showed significant reduction of tumors (all of mine are in lymph nodes only) and stable disease in the area that was growing on the last scan. I am about 10 days before 4th dose now and still feel good. In summary, >90% reduction in PSA and good clinical and radiographic responses. It is nice to be smiling more often these days.

love to all
rf

---

Dx Mar 2016 w G10 M1a @ 62yo, PSA 29
For 3 yrs: Lupron, PROSTVAC/chemo (PSA nadir 0.5)
Provenge, BAT, Zytiga, Xtandi, cabazitaxel
4/10/19 start VISION trial (177Lu-PSMA for mCRPC), PSA 65
2nd dose PSA 17
p 3rd dose PSA 5

Yes, that's a really nice response. Great!

Is there an hypothesis why this method seems to work well for some and not for others (absent the fact that not all prostate cancer cells express sufficient PSMA for this therapy to be effective)?