Good news: Hi folks - just thought I... - Advanced Prostate...

Advanced Prostate Cancer

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Good news

Stoneartist profile image
16 Replies

Hi folks - just thought I would inform of some good news here. Just got the latest blood results - Psa is down to 0.09 from the previous two readings which were static at 0.1. I dont read anything into that since I consider such small changes are not significant. But for the second time a 3 month period on only 80mg Xtandi has failed to have any adverse affect on my progression - I now consider that 80mg is keeping the beast at bay just as well as 120mg was - but the fatigue is much lighter. Makes me happy --- hope it continues for many years.

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Stoneartist profile image
Stoneartist
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16 Replies
Izzygirl1 profile image
Izzygirl1

I love your good news!! May you continue to have good news for many years!! ❤️

Tall_Allen profile image
Tall_Allen

PSA is not your cancer.

Stoneartist profile image
Stoneartist in reply to Tall_Allen

As you often say - but at the moment its the only yardstick I can use as to my progress - until something else begins to stir. So I use it and derive joy and satisfaction from the results.

Benkaymel profile image
Benkaymel in reply to Stoneartist

It's good that your PSA is stable and low but are you having scans from time to time to monitor any changes to mets?

Stoneartist profile image
Stoneartist in reply to Benkaymel

Oh yes - there will be scans periodically - its a discussion with the onkologist as to the timing - everything looks good at the moment

Tall_Allen profile image
Tall_Allen in reply to Stoneartist

My point is that you can't use it as a signal that 80mg is just as good as 160 mg. Using that "logic" one might conclude that 0 mg is even better. Both 160 mg and 0 mg will bring PSA down, but we know from clinical trials that 160 mg will sustain it and life longer. Using "logic" instead of empiricism is bad for one's health.

gsun profile image
gsun in reply to Tall_Allen

I appreciate your input but you should explain as you just did before making the statement "PSA is not your cancer".

Tall_Allen profile image
Tall_Allen in reply to gsun

The OP understood.

Stoneartist profile image
Stoneartist in reply to Tall_Allen

TA - that doesnt work for me. Im not interested in the PSA level - just the changes. My observations concern the last years results where the smooth downward curve continued down to nadir at 0.09, It is the subtle changes in this decline curve I have been watching - mostly to react if a reduced dose correlates with a reduced decline. This would make me up the dose to be sure. It didnt!. In fact if there was any correlation at al it was the opposite - reduced dose showed greater decline. But the values are so small I consider them insignificant. So my comments are observations based and related to my body and my cancer. My logic comes afterwards and speculates that it may be that we need a lesser dose to keep the cancer in remission than to arrest it when it is alive and rising. My plan for the future is SOC and observations of any relevant changes, plus scans at relevant intervals to check that there is no non-PSA cancer developing. Clinical trials are essential, but they encompass all types of bodies and all types of cancers and display results statistically - meaning you never know if the desired result applies to you, or you belong to the failure percent. As long as I am looking only at my body and my results, and applying them only to me, I consider this is a valid approach.

I have considerably less fatigue on 80mg than higher doses. Are there clinical trials which address the difference between 160 and 80mg specifically with cancer in remission rather that in full bloom??

Justfor_ profile image
Justfor_ in reply to Stoneartist

"reduced dose showed greater decline"

So VERY true, for two reasons, at least with Bicalutamide that I have research papers validated by personal long tracking measurements:

1) Serum half life is longer at lower dosages.

2) As -so common- in human nature, dosage vs PCa suppression follows a non linear curve. Maximum slope (1st derivative) at very low dosages, heading asymptotically to horizontal at saturation dosages.

Stoneartist profile image
Stoneartist in reply to Justfor_

Thats very interesting - thanks for posting that - makes sense to me with Xtandi and the halflife/saturation figures we have from the phase 1&2 trials.

Tall_Allen profile image
Tall_Allen in reply to Stoneartist

Again, you are mistaking PSA for cancer. And n-of-1 does not apply when one has to judge effectiveness from the group. If you look at Kaplan-Meier curves of men taking no enzalutamide, you will see that PSA progression is zero for some time. It later separates from the curve of men taking enzalutamide. But even after awhile, there are always some people taking nothing but ADT who haven't yet had PSA progression. It is just that, as a whole, men taking enzalutamide progress slower.

Phase 1 testing establishes the optimal dose. The optimal dose balances toxicity against efficacy. In statistical terms, they choose the dose that is at the top of the efficacy curve, just before it plateaus.

It is risky for your health to imagine that yours is an exceptional case. You are gambling with your life.

MateoBeach profile image
MateoBeach

Good going! Affirms the lower dose is working for you. PSA is your best bio marker to monitor for emerging progression of your PCa. The low value probably precludes identifying progression on PSMA scans, but still would do one at least annually to be careful. 👍👍🙏

Scout4answers profile image
Scout4answers

awesome !

j-o-h-n profile image
j-o-h-n

Good news is great to celebrate but don't get stoned.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/14/2023 11:02 PM DST

Stoneartist profile image
Stoneartist in reply to j-o-h-n

A couple of glasses of a good red wine is fine!!

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