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The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

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Posted 12/2/2017 10:09 PM (GMT 0)
bertb, that's good to hear! This is encouraging for anyone that lands here, since there's so much discouraging stuff out on the interwebz about the high Gleason cases. There is much hope!
Posted 12/4/2017 2:56 PM (GMT 0)
Hey Mrs. jkoRN and all

Just wanted to say hi, another G9 wife here. My DH was diagnosed three years ago. It’s been a huge change in life and we’re among the very lucky ones: he hit the genetics lottery, qualified for Keytruda (pembrolizumab) and has been PSA undetectable for a few months now.

The importance of knowing that you have (almost certainly) a good number of years with current treatments, is that research is genuinely moving at this point. When your husband needs them, there will probably be other better (more effective, less life impacting) treatments available in the future. That’s what happened to us! And olaparib is another good example. Barring the total collapse of Society, there will be more.

Dave may have some some thyroid stuff going on, this is one of the hazards of immunotherapy. I’ll post elsewhere once we know more.

— Carolyn
Posted 12/25/2017 1:05 AM (GMT 0)
Add me to the 4+5 list, please.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/BT/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9(4+5)
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Margins-apex,ureth,blad nk,SV
Lupron/Cas11/21
Axumin1/2/18,RT?

Post Edited (john4803) : 12/24/2017 6:14:46 PM (GMT-7)

Posted 12/30/2017 3:23 PM (GMT 0)
Add me to the 4+5 list also.
Posted 12/30/2017 4:21 PM (GMT 0)

Noggin2u2 said...
Add me to the 4+5 list also.

Noggin,

Did you have Adjuvant RT? And what radiation levels did you have?

I am having the Axumin Pet scan next week and if I have no met's outside of the pelvis, I will start Adjuvant RT in February/March. I am on Lupron/Casodex, also.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/Brh/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Margins-apex,ureth,blad nk,SV
Lupron/Cas11/21
Axumin1/2/18,RT?
Posted 12/30/2017 6:11 PM (GMT 0)
"Did you have Adjuvant RT? And what radiation levels did you have?"

Not sure the answer to either question but will find out next week.

Good luck with your scan!
Posted 12/30/2017 6:52 PM (GMT 0)
Noggin2u2 and John4803, you're on there. The list is sorted by date of diagnosis, as close as I can find it in signatures and so on. Welcome to the least favorite chapter of the club no one wants to join. Here's hoping for your situations to respond well to treatment!
Posted 1/3/2018 1:58 PM (GMT 0)
Fairwind,
I didn't see your reply until now. Yes I'm still on ADT/Lupron. My original therapy plan called for 24 months and I'll be inside 9 months to go on February 1. My MO took me off Casodex after 1 Year because SEs were difficult. I feel better as a result. If my PSA stays down, I will likely pause on Lupron this summer. At this point my biggest challenge is joint pain. I don't like taking pills as a rule so I'm trying to make it to Lupron free to further evaluate additional meds. Considering my advanced diagnosis, I'm going strong. I hope you are hanging tough and feeling well yourself. Thank you for reaching out. Happy New Year and Good Health.
Posted 1/3/2018 2:13 PM (GMT 0)
Redwing, thanks for adding me. This is a really good place for getting information. I've learned a lot the last two weeks. Some good, some not so good, but I have a lot better understanding of what I'm up against. Thanks to all who post.
Posted 1/3/2018 8:23 PM (GMT 0)

Naples said...
Fairwind,
I didn't see your reply until now. Yes I'm still on ADT/Lupron. My original therapy plan called for 24 months and I'll be inside 9 months to go on February 1. My MO took me off Casodex after 1 Year because SEs were difficult. I feel better as a result. If my PSA stays down, I will likely pause on Lupron this summer. At this point my biggest challenge is joint pain. I don't like taking pills as a rule so I'm trying to make it to Lupron free to further evaluate additional meds. Considering my advanced diagnosis, I'm going strong. I hope you are hanging tough and feeling well yourself. Thank you for reaching out. Happy New Year and Good Health.

Naples,

What caused your joint pain? I had RALP 11/15/17 and started lupron & casodex 11/21/17, possibly for 2 - 3 years depending on how radiation goes, I guess, starting in Feb. possibly. What were your SE's on both, if you don't mind sharing?

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/Brh/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 negative, RT 2/18?
Posted 1/3/2018 8:27 PM (GMT 0)

Noggin2u2 said...
"Did you have Adjuvant RT? And what radiation levels did you have?"

Not sure the answer to either question but will find out next week.

Good luck with your scan!

Noggin2u2, thanks!

My scan was negative. So, I assume my RO will recommend radiation in Feb. Meet 1/9/18.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/Brh/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 negative, RT 2/18?
Posted 1/4/2018 2:50 AM (GMT 0)
John4803- Am I understanding that you started Lupron and Casodex a week after you had surgery?

Larry
Posted 1/4/2018 5:12 AM (GMT 0)

Skypilot56 said...
John4803- Am I understanding that you started Lupron and Casodex a week after you had surgery?

Larry

That's correct, Larry. They wanted to hold off any mets occurring from the upgraded GS, until I was healed enough for RT.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/Brh/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 negative, RT 2/18?
Posted 1/4/2018 3:31 PM (GMT 0)
Ok very interesting haven't ever run across that scenario in all the reading I've done

thnx
Posted 2/16/2018 1:37 PM (GMT 0)
I too, had Gleason 9. Here is my summary:

PSA 4.3 May, 2017 via annual physical.
MRI - July, 2017, but the first Dr. forgot to call me with the results, so I called him 3 months later.
Biopsy with Gleason 9 identified in several cores, October, 2017
Robotic Surgery 12/21/17. 10-15% of the prostate had cancer. Significant Perineural Invasion.
Catheter Removed 1/2/18
Clean Margins & Lymph Nodes 1/9/18.
First PSA post surgery 2/5/18 at Roswell Park, the place that invented the PSA: Less than 0.04 (Undetectable) That's the lowest their machine goes.
Next PSA: June 27, 2018.

Currently no ED, almost dry at 8 weeks post surgery / 6 weeks post catheter removal, after a progression from diapers to heavy pads, to lighter pads, etc.
NOTE: Surgery was:
-Nerve Sparing with:
-Bladder Neck Preservation.

The Bladder Neck Preservation is highly recommended, as it enables incontinence to be quickly resolved. Very few Urologists perform it. I've found only 3 in most of Upstate NY.
I've noticed that the Urologists performing it are very adept, having done well over 1,000 Radical Prostatectemies on the Davinci robot, plus many, more difficult surgeries.
Posted 2/17/2018 12:58 AM (GMT 0)
Hi december21, thanks for posting. It's helpful for all of us G9 folks when people update this thread. I added you to the illustrious roster at the top of this thread. Welcome to the least favorite chapter of the club no one wants to join...

It sounds like you're doing well, congrats! Experience is really critical with surgeons, and apparently you found a good one. Incontinence is one of the things that people do find hard to live with, and the recovery seems quite variable. A procedure that improves recovery is always welcome.

Here's to a long series of undetectable PSAs!
Posted 2/24/2018 9:51 PM (GMT 0)
Ursolic Acid, Resvaratrol and Curcumin

https://www.nature.com/articles/s41698-017-0024-z

I thought there might be a thread on combining these supplements to starve PCa. I couldn't find a thread here but my navigation skills might be lacking. As a G5, I'm looking for any edge I can get and am interested in what others might know about this novel approach.
Posted 2/24/2018 11:18 PM (GMT 0)
John,

My joint pain really started about 6 months into Lupron/Casodex. My MO believes it was due to Casodex. I stopped Casodex 10.31.2017 and the joint pain has improved. I also drink 100% grape juice and that seems to help as well. Yes.. I had SEs on both Lupron and Casodex. Lupron gives me hot flashes. I'm trying soy milk for that. I also have ED big time from the Lupron. Casodex gave me brain fog and joint pain. I'm better since stopping Casodex. My last injection was 2.1.2018 and my MO indicated that I might continue Lupron beyond my 2 year therapy plan because it seems to be working. Not ideal but I'm dealing with it okay. G9 cells can become resistant to HT at some point so I'm taking what I can get. Good luck and don't look back. This is our best shot to delay metasticising.
Posted 2/25/2018 12:36 AM (GMT 0)
Mike2420,

For what it’s worth...I have been taking Curcumin and Resveratrol for years..not sure if it makes any difference but it is part of my diet and supplements

Jerry L.
Posted 2/25/2018 2:03 AM (GMT 0)

Naples said...
John,

My joint pain really started about 6 months into Lupron/Casodex. My MO believes it was due to Casodex. I stopped Casodex 10.31.2017 and the joint pain has improved. I also drink 100% grape juice and that seems to help as well. Yes.. I had SEs on both Lupron and Casodex. Lupron gives me hot flashes. I'm trying soy milk for that. I also have ED big time from the Lupron. Casodex gave me brain fog and joint pain. I'm better since stopping Casodex. My last injection was 2.1.2018 and my MO indicated that I might continue Lupron beyond my 2 year therapy plan because it seems to be working. Not ideal but I'm dealing with it okay. G9 cells can become resistant to HT at some point so I'm taking what I can get. Good luck and don't look back. This is our best shot to delay metasticising.

Thanks, Naples! Hang in there!

I started IMRT/IGRT, 2/20/18, for 37 treatments, at 66 Gy. My RO shocked me at the beginning, by suggesting I talk to a MO about doing Docetaxel (6 infusions), a couple of weeks after RT. This is based on the latest studies, which are probably the CHARRTED and STAMPEDE studies. I have been studying the concept and will have to be convinced before I consider Chemo or Zytiga, which is competing with Chemo. Will meet with an MO in the next couple of weeks to discuss it.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 0 PNI GS 8s & 7s, 9/12
NUC/CT Scans 8/29 (-)
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Rsk 23.5%, Met Rsk 29.6%.
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 (-)
Markers 1/3
Simulation 2/6
StartRT2/20, 37 tx

Post Edited (john4803) : 2/24/2018 9:15:20 PM (GMT-7)

Posted 2/25/2018 1:44 PM (GMT 0)
John,

My MO also said there may be some new ideas at a conference coming up in March. So I’ll be interested to see what’s next. Take care.
Posted 2/25/2018 11:37 PM (GMT 0)
Caratop
Always sad to hear of a young guy getting this disease. Feel free to ask us anything but remember that most of us are just patients not docs and everyone is different !
Bob
Posted 2/26/2018 5:18 PM (GMT 0)

Northfoot said...
i have been very blessed so far. Retested 2 weeks ago.

Northfoot,

you are truly an inspiration for us 4+5's. Would you mind sharing more of your path, ie., positive margins, bladder neck, sv's, lymph nodes, etc.?

Stay blessed!
Posted 3/3/2018 1:31 PM (GMT 0)
Added new member AbsAZ to the roster. Put him in the 4+5 group since I dunno his primary and secondary Gleason types.
Posted 3/28/2018 2:38 AM (GMT 0)
Update:
Greetings to bros of Gleason 9 crew,
Did my blood work yesterday...still good <.03
Apart from some lite side effects received from radiation, I m still doing fine.
Entering the 5th year of PCA
Just a word of encouragement...keep going bros...
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