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Advanced Prostate Cancer

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Hello, dear People!

tuta1960 profile image
20 Replies

Hello, my dears!

I have to ask u for some informations because I am very confused. My father îs on Xtandi for 6 months. After the first three months psa came down from 10.87 to 7.15. Yesterday, after another 3 months, his PSA îs 6.87. Stiller very high, I think. I guess it should have go down much more.

I also want to say that his testosteron îs Still undetactable. I can not understand why psa îs Still up when T îs very very low.

He s feeling good, he has a good tonus.

Please help me with any related information.

Last year, în january, we descovered a 120 psa , scor Gleason 8, bone mets.

Had docetaxel and eligard, psa raised in november.

ThNk u for your answers.

May God help US all!

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tuta1960 profile image
tuta1960
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20 Replies
MJCA profile image
MJCA

Hi,

I have found from my experience, that when a new medication is introduced, the PSA may drop very fast. As someone remains on the medication, the PSA may not drop as quickly. As long as the PSA is declining things are going well!

Best to you and your father!

tuta1960 profile image
tuta1960 in reply to MJCA

Thank you MJCA! I might have had too much expectation feom Xtandi. I was scared because of the slow decrease. I ce read. These days that a Quick decrease after treatment comes with very bad pronostic for treatment results. And for US was true. PSA dropped from 120 to 2 în three months. I hope It s ok, today he had his control CT.

I am scared about the undetectable Testosteron while PSA îs still up.

Wish you all the Best!

MJCA profile image
MJCA in reply to tuta1960

I have that as well - low testosterone, but my PSA is somewhat high. I assume your Father is also on androgen deprivation therapy such as Lupron or Eligard?

Always happy to help a fellow Romanian! My grandfather was from Bucaresti and my grandmother was from Botosani!

tuta1960 profile image
tuta1960 in reply to MJCA

My father îs from Botoșani! Such a nice surprise! It îs such s small.world! Love this group here, u are all kind.Yes. My father takes Eligard every months.

Thank you MJCA! You made me smile. God bless you!

MJCA profile image
MJCA in reply to tuta1960

You are most welcome! The Eligard will keep the testosterone levels low. Once a patient is classified castration-resistant, Eligard will lower testosterone levels, but will not affect the PSA. It IS a small world. I remember making mamaliga for my Dad!

tuta1960 profile image
tuta1960 in reply to MJCA

Thank you!

tuta1960 profile image
tuta1960 in reply to tuta1960

Mămăligă is one of the Best!

Magnus1964 profile image
Magnus1964

His PSA is still low. If it goes up, then he may have to switch to another drug.

Tall_Allen profile image
Tall_Allen

There will always be some resistant cancer cells, which accounts for the residual PSA. But his response so far has been very good.

tuta1960 profile image
tuta1960 in reply to Tall_Allen

Thank you, I always trust your response! Thank u, you gave me reason to be calm.

Kaliber profile image
Kaliber

This is strictly anecdotal and IMHO ….. but there is some thought that the longer slower the curve to nadir on Xtandi , the longer more effective it is for the patient. Guys that have that slow nice curve down , may last longer than others that drop instantly or don’t drop much at all. I’d suspect it’s related to the individual and his species of cancer as well.

Just say’in

❤️❤️❤️

tuta1960 profile image
tuta1960 in reply to Kaliber

Thank you! I just read this a few days agora, I wasn t sure obout that. I hope it s true! Thank you for your answer! Wish u all the Best!

in reply to Kaliber

Where can I read about that??

Kaliber profile image
Kaliber in reply to

well that’s a toughie, the first one was my ( now retired ) pcp when I was diagnosed. He told me two things. 1. It’s often the case that the people with the highest PSA values , when DXed are often the ones that respond best to treatment and live longer. My PSA at DX was 1400-1600 , and he was right in my case. Now, tho, we know that more likely it’s about how aggressive your cancer is and which species it is. That, tho, doesn’t say his statement doesn’t take that into consideration.

And 2. He said that patients that have a more gradual drop in PSA , to nadir, after starting ADT seems to benefit most and last longer.

I’ve been on the group over 4 years now , and my memory isn’t what it once was, but there has been discussion about it , surely all antidotal , but it seems to be a pattern that emerged over time. I’m not sure how you’d look that up but maybe T_A or others could speak more specifically about it.

❤️❤️❤️

tuta1960 profile image
tuta1960 in reply to Kaliber

You gave me such a promising answer. God help US, May God help you forever. I can only thank you!

lcfcpolo profile image
lcfcpolo in reply to Kaliber

This is good to read. What treatments have you had so far please?

Kaliber profile image
Kaliber in reply to lcfcpolo

I was DXed dead , so to speak. I was DXed very late , my frame literally paved with painful Mets and met damage, psa 1400-1600 , my blood work was hovering way below the green zone , bouncing off zero when measured every two weeks. ( a couple sky high ) . A table full of grim faced doctors told my wife and myself that I needed to enter inpatient hospice immediately , I was toast. At that point I’d never had any kind of treatment. I told them I wasn’t ready for hospice and I wanted to try something, anything. They gave me Lupron, Xtandi and 50+ rounds of Zometa … with the thought it might , slow - stop my cancer growth, lessen my bone pain and give me more time. They told me , 55 months ago, there would not be more scans or surgery or radiation. I’ve lived WAY beyond their expectations and am a medical oddity enough that they bring in other specialists to talk to me and ask me questions during my annual visits . Makes me feel like a zoo freak , kinda…. The way they treat me.

But not true to what they said tho, I’ve had 4 oncologists and two pcps since then ( probably 5 minute introductory visits with the oncologist ) , I did receive another , new pcp requested , body scan … groin to head ( below that is trashed ) a few weeks ago and it confirmed expected , continued , degenerative changes in my Mets and a chit load of spinal compression and disfigurements. Basically they are just trying to slow things down and make me comfortable as I croak. Trying to stretch out my time. We don’t discuss more treatments, stuff like that. When I ask they just change the subject. I’m hoping that when Xtandi quits, I’ll receive additional tries at keeping me alive, not sure tho. They don’t / won’t say much to me. It’s my belief that when your records have that initial “ hospice “ DX on them , it kinda puts you in a different category of deep palliative / pre hospice treatment only. I’m hoping they will give me more treatments, I’m sure they should / will but they don’t- won’t talk about it at this point. I kinda get the impression they don’t- won’t because they don’t expect me to make it that far. Yayahahahaya yayahahahaya. Whatever …

lcfcpolo profile image
lcfcpolo in reply to Kaliber

Cheers mate. I can fully relate to you. I was diagnosed with a PSA of 1311. The oncologist ticked the palliative care box, not curative box. Literally a box tick and that's it. Lupron and Xtandi for me. 36 months since diagnosis. So far so good but had another blood test today, so anxious until Monday. Good luck to you. You have responded really well.

tuta1960 profile image
tuta1960 in reply to lcfcpolo

💪it s going to be ok

Kaliber profile image
Kaliber in reply to lcfcpolo

I’m rooting for a great long run on the Xtandi for you brother. Lots of guys on the group have been on it a decade or more, successfully. Myself 55 months and I’m still going strong. Let us know how the tests went.

❤️❤️❤️

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