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

Djin, first, congrats at what, at least on the surface is a great result. You've been very fortunate, here's hoping that continues forever.

While i am not practicing what you preach, i totally get it, its frustrating when you are so dilligent about protocol, and they just switch tests on you, and it makes it difficult to truly assess your status. I am guessing, that you are wasting your time contacting Laborp, and your better bet might be to contact your ordering Drs office and asking them to have labcorp rerun the test using the LLD assay.

I had an experience with Quest, before you arrivd here, where the result was off the charts nonsense, and they told me the only way they could rerun the test on the same sample, would be through an order from the urologist.

Again, this is obviously great news no matter how you look at it, very happy for you

JDill,
Sorry about the recurrence. Are you under the care of a Medical Oncologist specializing in PCa? If not I recommend you do so.

You didn't say if you are getting Lupron only. The current standard of care is to include a second line ADT medication -- Zytiga or Xtandi or Erleada -- to the Lupron. Major trials show significantly better remissions when including these drugs while you are still hormone sensitive.

Good luck!

I got my 6-month uPSA back today and it went up, from <0.014 to 0.037. Message from my uro/surgeon in his practice's dashboard is

"Higher than it's been, although still extremely low. Let's repeat this in 3 months instead of 6. We will call to reschedule your appointment. but we'll do the next PSA in 3 months instead of 6 to keep an eye on it."

Here is post-op PSA history:

(3 m ) 0.010
(6 m ) 0.009
(9 m ) 0.007 (nadir)
(1 yr.) 0.018 (huh?)
(13 m) 0.013 (30 day retest)
(15 m) 0.012
(18 m) 0.015
(21 m) 0.015
(2 yr. ) 0.016
(28 m) 0.015
(34 m) <0.014
(3 yr 4 m) 0.037

Could this be just a blip? Who knows. Note that I did have a strange jump from 0.007 to 0.018 at 1 year post-op, which then came down again.

I was talking to my doc yesterday (we didn't have my PSA results then) about my chances of remaining BCR-free now that I'm past the 3-year mark. He thought they were good. When I asked, he said he had a patient who was also G9 who developed BCR in year 7 (!) Doc pointed out that, unlike me, he had adverse features at RP (EPE and a positive margin). He pointed out again that factors mitigating in favor of a good prognosis after BCR are (1) a low doubling time and (2) a longer time between RP and the start of BCR.

At least this not-so-great news came in this crappy year and not the next (ha ha). In my favor, I have a low Decipher score, a pT2 path staging with no positive margins (and 16 negative nodes), a pre-op PSA below 10, and a few years of undetectable PSA. Of course all that counts for bubkes if my PSA doesn't cooperate!

Speaking yesterday, my uro thinks that with my very high-grade disease that didn't return in the first two years, the chances favor any recurrence being lower-grade local mets amenable to pelvic RT. Who knows, perhaps we'll have a local site for 68Ga-PET scans by the time I need one.

Djin

Djin, Here’s hoping that this is just a blip

Had my quarterly PSA today. Undetectable.

I see the MO tommorow for the routine. He asks me how I'm doing, checks my heart, checks my lungs, and checks my ankles. Then he sends me upstairs for a shot.

Good enough for me and my ADT. 🙂

Mattam, that is great news, congrats, great way to start off the new year

Congrats Mattam, that is great news. Nice way to start the year

Alephnull,
Sorry to hear that. Xtandi should bring it down.

Stephen - I am about a year ahead of you with similar stats although my PSA was < 0.10 and I had ART vs. SRT. You are much younger so it probably affects you more as a guess on my part but everyone is different and copes differently.

I have slowly got used to the PSA testing and the PCa situation such that the tests do not bother me when the time comes but once done, waiting for the results still kicks up the anxiety a notch. I have resigned myself that it will be what it will be and when and if something happens, I will deal with it then and try not to worry much about it until then. This is much easier said then done unfortunately but remember, you are “cured” until the next test and the doctors say you have a problem.

I will add that this Covid situation is doing nothing positive for cancer patients. Couple that with winter in the northern country and it gets tough to keep the spirits up. Just have to dust yourself off and get on with life. Hopefully, 2021 will get better as the weather improvesand life will become more normal.

Started Lupron November 2017 & on it for life. I am Stage 4 with multiple mets to the bones. Correct, no radiation.

Just posting my husband's updates in the Gleason 9 thread. Thanks Redwing for keeping it going/

Husband DX @ 70 yrs (76 now)
pacemaker; Agent Orange 6-9/14: blood in urine; DRE suspicious
bx 11/14: G 9 (4+5), PSA: 3.32 high Gleason, low PSA, PNI involved
11/14: Lupron 33 mos
6/15: 9 wks IMRT
9/15: .14
1/16=.093
4/16=.079
11/16=.05
2/17-5/17=.05
11/17=.08
2/18 .20
4/18 0.98
6/18: 3-4 bone mets
7/18 3.29
8/18 9.87 Lupron re-started; Zytiga/Prednisone started 2/9/2019
2/28/19 PSA 4.02 (ALP=85; ALT-23; AST=30) 3 wks. post Zytiga start
4/11/19 PSA 1.80 (ALP=68; alt=22; AST=27)
6/14/19: PSA 1.26 (ALP=62; alt=85; AST=50) Zytiga 2-wk break
8/2/19: PSA 0.64 (ALP=57; alt=159; AST=92 (told to resume Zytiga)
8/16/19: PSA 0.64 (ALP=62; alt=173; AST=103 Bone and CT scans done
8/20/19 VISIT: Scans indicate intensity of old mets but many new ones in spine, ribs, pelvis
"Kidney, bladder and soft tissue uptake with expected limits) Chemo recommended. Guardant360 administered; no more Zytiga
10/3/19: Blood test: PSA .64; (ALP 53 down from 173) AST: 36; ALT: 33; Calcium 9.8
10/21/19: Bone scan: "Appearance generally similar to 8/19 scans.
Abdomen pelvis: no evidence of metastic disease in pelvis, abdomen; possible liver cysts
10/2019-3/4/2020: 6 scheduled 3-week cycles Docetaxel with prednisone; Lupron; Xgeva started; some neuropathy
3/2/2020 scans: "generally stable" PSA still low ; liver cysts shrunk so possibly they were liver mets
3/6/2020: MO recommended 7th infusion to ensure stability. 7th infusion done that day w/o using cold mitts and socks since it was done on the spot. Some additional neuropathy developing.
4/3/20: 8th Docetaxel @ 75% dose PSA: 0.39;
4/24/20: 9th Docetaxel @ 75% dose (no PSA taken)
5/15/20: 10th Docetaxel @75% dose PSA: 0.32 (ALP: 39)
6/3/20: Bone & CT scans--results "stable" since 10/2019; weaning off prednisone; continue Lupron Xgeva
PSA: .32; ALP: 39
7/10/20: PSA .30; ALP: 39 (off prednisone; continued Lupron, Xgeva)
9/4/20: PSA: .37 ALP: 66 (bit of a bump)
10/5/20: PSA: .38 ? ALP: 42 (down again)
Nov. 2019-Dec. 2020 PSAs during chemo and post chemo: .77 .60 .51 .39 .32 .30 .37 .34 .30 (ALP=37)
JAN, 2021: bone and CT scans "stable." No PSA taken (ALP=38); FEB, 2021: PSA .20, (ALP: 3);

Post Edited (spouse21) : 4/14/2022 8:31:59 AM (GMT-6)

I’m not sure if I’ve updated anything on this thread since my first addition in the first version of this thread. Just thought I’d share that I posted an 8 year update on a separate thread in case any new guys want to take a look.

Redwing, good to see that this thread just keeps on trucking. Thank you for your efforts if it’s you still maintaining it. I won’t repeat my other thread here but I will say that this is probably a better thread to share the following:

I know a few G9 guys that passed away just a couple years after their diagnosis. A few more, a group I thought would outlive me, passed away at their 7-8 year mark. I attended funerals of some of these men after enjoying some wonderful correspondence with them throughout our journeys. With some of the details that I posted in my other thread, and with the thought of these guys in my memory, it was nerve wracking to experience each development over the last year or so. I’m generally a very forward looking, optimistic person. But a body can only take so much before your brain starts to give you “ other” than optimistic thoughts. It’s been a roller coaster for sure.

Cheers to all of you fellow G9+ warriors. For the new guys, the doctors are getting smarter, more aggressive for guys like us. And the technology and treatments available have even come a long way in my 8 years. I haven’t quite tried everything yet but I have a pretty broad array of experiences with way more than I ever thought I would even live to see. There are more options on the horizon. Hang in there and keep yourselves in decent enough shape to keep all of your options open.

I’m hearing that sometimes there are cases where guys just hang in so long that the cancer seems to get tired of trying and literally just fades away for a while. That’s not very specific. I’ll try to give you more details when I get there.

Keep the faith.