ragnar20202 years ago

Greetings,

Can you elaborate on your statement, "And I’m now “Grade 5” in the new Gleason system High Grade Prostate Cancer?"

What "new Gleason system?" Did I miss something significant that happened in the Gleason scoring world? Thanks.

Who and where is your MO?

Jeff

noahware in reply to ragnar20202 years ago

Hey, Jeff... he means "grade GROUP 5" as follows:

Grade group 1: Gleason score 6 or lower (low-grade cancer)

Grade group 2: Gleason score 3 + 4 = 7 (medium-grade cancer)

Grade group 3: Gleason score 4 + 3 = 7 (medium-grade cancer)

Grade group 4: Gleason score 8 (high-grade cancer)

Grade group 5: Gleason score 9 to 10 (high-grade cancer)

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happycamperguy in reply to noahware2 years ago

Thanks for the Grade GROUP clarification!

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noahware in reply to happycamperguy2 years ago

Technically, I think you are correct in just using the term "grade" but then it more easily gets confused with "score." But... nobody here with Gleason SCORE of 5, I'm pretty sure.That's a bummer to go from a 7 to a 9. Good luck!

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Haniff in reply to noahware2 years ago

Thanks for the update🙏👍

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Tall_Allen2 years ago

I don't understand why you'd do Taxotere without any metastases. Why would you stop ADT? Why would you stop abiraterone if it is controlling your cancer. Sorry - none of this makes sense to me.

happycamperguy in reply to Tall_Allen2 years ago

My July 2, 2020, Axumin scan showed cancer in 3 areas:

1. Left retroperineal lymphadenopathy.

2 left pelvic sidewall lymphadenopathy.

3. Radiotracer accumulation in prostate bed.

These 3 areas were irradiated 39 times by RO with Varian Trilogy.

Doesn’t this mean the cancer had metastasized to those 3 areas?

The RO could see my tumors shrink in latter weeks of radiation. He referred me to my new MO, who says my PSA on Firmagon and Abiraterone should have dropped farther.

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Tall_Allen in reply to happycamperguy2 years ago

OK- you left out the part about metastases. Now it makes sense. Thanks.

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happycamperguy in reply to Tall_Allen2 years ago

Allen, my MO and I will Re-assess my treatment plan in a couple months. Seems to me I should continue ADT until PSA is below 0.2 (undetectable), even if it takes a bit longer. Make sense?

And does previous metasteses last year combined with “slow” drop in PSA on Abiraterone the past 4 months preclude me from simply continuing Abiraterone/lupron ADT? It seems many cancer patients simply take ADT for longer times to fight the cancer beast.

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Tall_Allen in reply to happycamperguy2 years ago

I can't understand why you would ever stop ADT. If ADT is getting your testosterone level down, it is working. You would never stop it. You wouldn't stop abiraterone either until there is clinical evidence of failure- like a large rise in PSA and new metastases on scans. Sometimes you can get more life out of abiraterone by switching from prednisone to dexamethasone. Email this link to your oncologist and discuss with him:

bjui-journals.onlinelibrary...

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Pleroma2 years ago

I don't get why you would stop Abiraterone when your PSA is going down.

Let the Abiraterone run its full course. Some switch from Prednisone to the more potent Dexamethasone when PSA starts going up. It can eke out another few months.

I would be concerned if PSA is doubling every 30 days.

Your treatment plan does not make sense.

GP242 years ago

The PSA value would go up if the treatment is not working. I would not stop the therapy just because the PSA value drops more slowly than your doctor expected.

LearnAll2 years ago

Happy Camper...As long as PSA is falling down with current regimen.. Stay with it. Slow decline in PSA is BETTER than rapid decline.....There is something called " Time to Nadir" (TTN) . Men whose PSA falls slowly and reaches 0.2 ng/ml or lower in over 12 months is likely to live more than 6 years. But, the PSA must decline to very low level (less than 0.2) ...does not matter how many months it takes. The lowest point of PSA is called "Nadir PSA"

happycamperguy in reply to LearnAll2 years ago

Thanks. My Feb. 11 PSA Ultrasensitive was down to 0.341. I’m awaiting my March 11 PSA Ultrasensitive result. Hoping it’s lower and continues the downward trend.

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happycamperguy in reply to happycamperguy2 years ago

Is this 1-month “plateau” of PSA Ultrasensitive significant?

My March 11, 2021, PSA Ultrasensitive was 0.342 compared to a month earlier when it was 0.341.

Prior to that, my PSA Ultrasensitive had been dropping for months:

-4 Sept 2020 PSA = 3.210

-30 Oct. 2020 PSA = 1.610

-4 Nov 2020 Started Abiraterone 1000 mg daily in addition to Firmagon monthly.

-19 Nov 2020 PSA = 1.89 (an increase).

-17 Dec. 2020 PSA = 0.751

-14 Jan 2021 PSA = 0.596

-11 Feb. 2021 PSA = 0.341

-11 March 2022 PSA = 0.342

Is that last slight increase significant? Is this 1-month “plateau” significant?

Thanks in advance for your perspectives.

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happycamperguy2 years ago

Thanks for your responses. Seems like the declining PSA is a good sign and I should continue Abiraterone and now Lupron.

Note my July 2, 2020, Axumin scan showed cancer still in left retroperineal lymph node, left pelvic sidewall lymph node, and prostate bed. Seems to me that cancer “metastasized” in these 3 areas.

To clarify, my notes from my MO visit 2 days ago say the MO said:

-We will Re-assess after 6 months Abiraterone. I’ve been on Abiraterone 4 months thus far.

-we’d monitor PSA for doubling time if we stop ADT.

-later imaging may show “microscopic” cancer tumors.

-4 months on Firmagon from July-November 2020 got PSA Ultrasensitive down to 1.89. MO said not very low considering 4 months of Firmagon-only ADT.

-I’m not sensitive to ADT.

-My PSA is down 65-70 percent in recent months, but 90 percent patients like me would be down to undetectable by now.

-Chemo would kill aggressive cancer in me. Then we could do Apalutamide after that.

-Chemo if used would be Taxotere plus Carboplatin.

Seems like MO combined my numbers and Gleason Group 5 condition with his comparative patient experiences to reach a conclusion of sorts.

noahware in reply to happycamperguy2 years ago

I wonder why your MO thinks the rapid decline in PSA is so important, in light of what LearnAll wrote. You might mention to the MO that some research indicates that a slower decline, even if not typical, might represent GOOD news, not bad.

Here is an article you might share, reflecting LearnAll's comment:

ncbi.nlm.nih.gov/pmc/articl...

"Several recent studies describing results from large, multicenter investigations demonstrated that longer TTN [time to PSA nadir] periods after primary ADT can predict favorable progression-free survival and overall survival in various hormone-naïve patient populations. Akbay et al. showed that rapid PSA decline patients patients had higher rates of PSA progression, while prolonged PSA decline patients patients had lower rates of PSA progression. These findings may seem counterintuitive in that they suggest that a more rapid response to primary ADT indicates more aggressive disease."

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LearnAll in reply to noahware2 years ago

And the reason for slow decline of PSA is presence of tumor regulating cells called Fibroblasts. Very rapid PSA decline is inferior to slow decline over a period of 10 to 15 months. That is long TTM (Time to Nadir) Many research papers have confirmed that lowest Nadir and long TTN is better for survival ,

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Walter_Gould2 years ago

My PSA went from 35.5 to undetectable in four months.

happycamperguy in reply to Walter_Gould2 years ago

Was this on Abiraterone and Firmagon?

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Walter_Gould in reply to happycamperguy2 years ago

Abi

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doc1947g2 years ago

73 y.o. with Lymphoma NH Marginal Zone and many Acute Chronic Diseases.

My Immune System is VERY low.

That gave me a Severe Physical Limitation. 2 walks of 0.75 km with a walker, then my Pulmonary Emphesyma Gold Grade 3 kick in and I have to rest and catch my breath.

1994 Had a work accident followed by Discoidectomy L4-L5 and Permanent Acute Lumbalgy, on Fentanyl 87 μg/hr patches and recently on CBD 20mg/TID (and later on THC 14mg/HS.

2004 Blood Tests showed a Acute Chronic Renal Insufficency Stade 3, which is treated as Wait & Watch ,with Blood Tests every 4 to 6 months. Stable so far.

*Prostate-specific antigen (PSA)*

*Pré-Hormonothérapie*

4.23μg/L (2001/07/18), 2.2 μg/L (2002/07/23), 1.8 μg/L (2006/07/04), 2.2 μg/L (2008/09/22), 2.4 μg/L (2009/05/20), 2.05 μg/L (2011/08/26), 2.25 μg/L (2012/08/13), 2.05 μg/L (2013/08/06), 2.77 μg/L (2014/07/28), 3.84 μg/L (2015/07/06), 1.97 μg/L (2016/06/30), 3.89 μg/L (2017/06/13), 6.8 μg/L (2019/09/10), 11.7 μg/L (2019/10/28),

*Pre-Biopsies*(2020/01/29)

13.7 μg/L (2020/01/08), 16.7μg/L (2020/03/02), 20.4 μg/L (2020/04/06),

*Per-Hormonothérapie*

1.76 μg/L (2020/05/04), 8.58μg/L (2020/05/27), 0.18 μg/L (2020/07/29),

*Post-Hormonothérapie*

0.03 μg/L (2020/09/15), 0.01 μg/L (2020/12/15), 0.01 μg/L (2021/02/11)

*Testostérone*

*Pré-Hormonothérapie*

10.30nmol/L - 294.19ng/dL (2020/05/04), 15.2nmol/L - 438.04ng/dL (2020/05/27),

*Per-Hormonothérapie*

< 0.2nmol/L - < 5.768ng/dL (2020/07/29),

*Post-Hormonothérapie*

< 0.2nmol/L - < 5.768ng/dL (2020/09/15), 0.3nmol/L - 8.6455ng/dL (2020/12/15), 0.4nmol/L - 11.5214ng/dL (2021/02/11)

Prostate went from 24.7cc to 45.86cc.

2020/01/29(Biopsies Taken)2020 March 3rd(Results) I had 6 cores out of 12 positive on the right side at 85% G4, then on a Special pre-RT Scan they found multiple tumors on both sides.

I was in the Ufavorable Intermediate Risk group with a G(4+3=7) Grade 3.

April 4th 2020 I got and injection of Eligard 45mg/24weeks on that was screw-up so I did not get the benefit of Pre-RT 8 weeks of ADT.

*And on Casodex 50mg/I.D. X 30 days.

2020 May 31st & 2020 Aug 24th to 2020 Nov 16th. I have been on Lupron Depot 22.5mg/12weeks X 2 from and on

June 8th 2020 to July 7th 2020 VMAT-RT 3Gy X 20Fx and my

PSA = <0.01µg/L and my

Testosterone = 0.4nmol/L or 0.1154µg/L or 115.368ng/L or 11.5368ng/dL.

As of Feb 11th 2021.

Next tests on March 1st 2021 and March 11th 2021.

And a second Cystoscopy on March 3rd 2021 was painfull too but should be no more. First one on Nov 16th 2020 showed a lot of strictures, some were relatively bigger( made the Cystoscopy very painfull).

On Oct. 2020 I started a Severe Depression and was put on Sertraline 200mg/HS plus R/V with a specialist psychologist who deals only on patients with 2 cancers and other chronic diseases.

On 2021/03/07 another medication = Aripiprazole to increase my energy.

Except for the Heat Flashes and B Size Cup Breast I feel not too bad considering my other health problems. When I look at other patients who went for RP and all the Secondary Effects they have, I am really happy about my choice which in fact was my RO decision du to all my other Health Problems and my age. In Quebec, Canada unless special exceptions they do not to RP since it involves Anaesthesia and a Head-down position which is VERY hard for the breathing..

We need to keep FIGHTING against that awfull disease.

I have 1 daughter and 4 sons. 1 grand-son and 1 grand-daughter and I want to see them growing. I will SURVIVE!!!

docbulldog2 years ago

I've tried to stay positive with my plan involving Zytiga. I've been on Eligard and xgeva since 5/2014 when PSA jumped to 13.00. Low point after that was 0.44, and rose to 6.80, then I started Provenge05/17 followed by Xtandi in 07/2017. PSA dropped to 0.23 by 03/2018. T in 07/2020 was at .261 but PSA rose to 14.11 08/2020 it was suggested I start Zytiga. From August to November my PSA rose to 20.11 and I became pretty darn discouraged until after changing from Prednisone to Dexamethasone and seeing my PSA drop to 10.07 in 12/2020. My PSA continued to drop the next month to 4.48 then it rose again to 6.50 03/03/21. A little discouraging will not give up on the Zytiga yet. My last scan didn't show any new mets, but still a concern at L3 and T9. I think I need to see a RO to evaluated that situation. Any suggestions I am wide open for.

Gentlemen keep up the good fight, I believe there is some great help coming...