Gleason 10 Stage 4 Metastatic Responding Well to Treatment

[Brad70]

At this time I feel well with minimal side effects. Feel free to ask questions.

Here's a time line of my experience this summer:

Investigative Procedures:

22-Mar - PSA test: 26.5 ng/mL

18-Apr - Repeat PSA test: 25.0 ng/mL

1-May - MRI scan of pelvic region for biopsy planning

19-Mar - Transperineal MRI/Ultrasound fusion biopsy

19-May - Pathology Report: Prostatic adenocarcinoma; type: Acinar; Gleason score = 10

1-Jun - PSMA PET CT Scan with F-18: Stage 4 Metastatic Prostate Cancer involving pelvic lymph nodes and seminal vesicles

21-Jun - Total Testosterone test: 271 ng/dL

5-Jul - MRI for radiation treatment planning

21-Jun - PSA test: 33.0 ng/mL

7-Jul - Invitae genetic testing: BRCA2 gene variant identified

14-Jul - FoundationOne CDx: BRCA2 & RB1 gene variants identified in biopsy sample

21-Jul - PSA test: 3.0 ng/mL

4-Aug - Total Testosterone test: <7 ng/dl

4-Aug - PSA test: 0.38 ng/mL

14-Sep - PSA test: <0.10 ng/mL

Treatments:

21-Jun - Eligard 3 month injection

3-Jul - Abiraterone 1000 mg/day + Epelerenone 50 mg/day, stopped July 21 due to liver function

10-Jul - First of 20 Photon IMRT treatments

4-Aug - Last of 20 Photon IMRT treatments

4-Aug - Abiraterone 500 mg/day + Epelerenone 50 mg/day, stopped August 22 due to liver function

30-Aug - Abiraterone 250 mg/day + Epelerenone 50 mg/day

14-Sep - Eligard 3 month injection

Food Supplements: resveratrol; pyrroloquinoline quinone; ubiquinol; calcium alpha-ketoglutarate; omega 3 fatty acid; IP6 + Inositol; calcium citrate; D3; multi-vitamin

[Yzinger]

Hi Brad - were you diagnosed this year?

Congrats and good trending.

[Brad70 in reply to Yzinger]

Yes, high PSA in March 2023, and biopsy in May

[Yzinger in reply to Brad70]

Thanks - I also was just dx'd this year. Will be following.

[VHRguy]

Sorry to hear of your situation. You've made a good informative post. It sounds like you are on the right track to handle your difficult diagnosis.

Mine was a G9, 5+4, locally advanced, 10 years ago. Those type 5 cells are nasty buggers, and merit aggressive treatment. I restarted ADT due to biochemical recurrence a bit over 4 years ago, and have an undetectable PSA even today.

One quick comment about the ADT (Eligard) - I suspect you will be permanently on testosterone suppression. Lupron Depot is available in six month injections, and I was on that for a couple of years. It effectively suppressed my testosterone for that entire period. Getting one shot every six months was convenient, and more cost effective in my humble opinion.

Here's hoping you get a good long run out of ADT. I know of an individual whose PSA was 3200 at diagnosis, widely metastatic, and he is still enjoying life out in the Seattle area well over 10+ years later. He had a Provenge treatment early-on, and I don't know if that's still an available option. It's an immune therapy done through a blood draw, modification, and reinjection.

[Brad70 in reply to VHRguy]

Lupron Depot is injected into muscle, Eligard into belly fat, just under the skin. I don't have much fat at 6' 3" & 165 lbs but there is no discomfort. I'm being treated at the Mayo Clinic in Rochester, MN. I don't mind driving there (130 miles of scenic country roads) 4 times per year. I ride my H-D - weather permitting. The 90 day interval seems good for PSA monitoring and I can see a doctor if needed.

Provenge is still available.

[Scout4answers]

I have a very similar condition and am doing very well. I attribute my high energy and lack of side effects to regular exercise - resistance training ( lifting weights and HIIT on an indoor bike) Also swing dancing 2x or more per week.

My sex life has continued normally with the exception of ejaculations which I have not had since beginning ADT. See my profile for details.

Life is good and is far from over. I believe if we live for 5 more years science will find either a cure or a way to put PCa in permanent remission.

[Yzinger]

maybe a new thread needed for this but wth is this retrograde ejaculation??? I did recently start Cialis and early indications seem it will work for erection. Any chance it helps with retrograde?

[32Percenter in reply to Yzinger]

The lack of ejaculation on ADT isn't due to retro. Basically your body can't manufacture sperm or semen without testosterone. Nothing we can do, just enjoy the savings on kleenex and birth control.

Dr. John Mulhall has a book on Kindle called "Saving Your Sex Life" that goes into the nitty gritty about how your machinery changes after RP or ADT.

[Yzinger in reply to 32Percenter]

Thanks - although my retro started prior to ADT.

[j-o-h-n in reply to 32Percenter]

My savings were kept in a hermetically sealed #2 mayonnaise jar on Funk and Wagnall's back porch near Johnny Carson's home. My savings were spent many many years ago.

note: Mayo jar cleaned and polished awaiting ashes.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/19/2023 10:32 PM DST

[Jewelrylady]

Has the reduction in the abiraterone from 1000 to 250 still kept your PSA and testosterone low? Has this improved your liver function labs?

[Brad70 in reply to Jewelrylady]

I was on no "Abi" beginning Aug 22, then started 250 Aug 30 as liver function was fine. On Sept 14 PSA was undetectable, liver function was slightly elevated on one of three tests, so, staying at 250. Will be retested at the end of September.

250 mg can equal 1000 if taken with food, so, it seems some there is room for the effective dose absorbed by the body to vary a lot from person to person. I take the 250 on an empty stomach at night before bed.

I am not taking a steroid medication to combat the side effects, I am taking Eplerenone. This avoids the bad side effects of steroids taken long term. Look here: ncbi.nlm.nih.gov/pmc/articl....

[Brad70]

Anybody know something about treatment specific to the RB1 gene variant that was detected in the cancer sample from my biopsy?

[Mascouche]

Hi Brad. Just wanted to suggest that you copy-paste your profile/bio. This way it stays with you and it makes it is easy to find months down the road as you don't have to search for what post may hold the various details. Best of luck to you.