Apalutamide and rising PSA - Advanced Prostate...

Advanced Prostate Cancer

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Apalutamide and rising PSA

MJCA profile image
MJCA
26 Replies

Hey Gents,

Been fighting this motha close to 15 years. When I became castration resistant, I started apalutamide 14 months ago. My PSA dropped from 13.4 to 1.0 over 10 months. I saw my MO last week and my PSA went from 1.0 to 1.5.

The doctor says not to worry as he tells me I need a new bone scan and CT. On a mathematical level, my PSA increased 50%, one can infer a 6 month doubling time. My PSA has never bounced up and down; if it starts rising it continues until some form of intervention. Should I be freaking out?

Thanks for your help!

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MJCA
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26 Replies
RICH22 profile image
RICH22

freaking out is never helpful but sometimes unavoidable. all i can say is you got a good bunch of guys with good info here. I joined a couple years ago, learned to avoid ANYTHING by Tall Allen. Everyone else raves about him but he's human, makes as many mistakes as anyone else.

This doubling time thing has me miffed. If PSA is volumetric, then it is directly proportional to the number of PCa cells.... so a psa of 1, 1.5 -- tiny numbers. the rate of change may tell you how fast the shit is growing, so reduces your decision-making time. but guys that go crazy with radiation txs because their psa goes from 0.05 to 0.1? i dunno, man.

anyway, good luck.

Schwah profile image
Schwah in reply to RICH22

Rich I’m very disappointed by your hard knock on Tall Allen. Of course he’s not perfect and we should all take anything we hear on this site or elsewhere with a grain of salt and do our own investigation. But to say to “avoid anything” he says , seems unfair and unreasonable not to mention down right mean. I’ve found his knowledge and time here helping others to be invaluable. He does it for no remuneration and with only the best intentions I’m quite sure. He’s personally spent much time private messaging me to help with my own concerns and I’m quite sure I’m the tip of the iceberg. Unless you know something we do not, I think you owe him an apology. We need knowledgeable people like him on this site. Please don’t push him away.

Schwah

GreenStreet profile image
GreenStreet in reply to Schwah

I completely agree Schwah

in reply to Schwah

I agree. TA is one of the most knowlegeable people on the forum.

Rich, if you have a specific disagreement with him or anyone else, post it along with references so we can evaluate it. But don't make broad generalizations about someone who clearly is very knowledgeable. It makes you look bad.

tallguy2 profile image
tallguy2 in reply to Schwah

I agree with you 100%.

Shanti1 profile image
Shanti1 in reply to RICH22

Seeing this comment which singles out a valued member of this group doesn't seem kind or fair. While we all must investigate on our own, I personally have learned a lot from TA and his expertise. His selfless service and dedication to all of us on this site is something I am grateful for. I don't always agree with what he says, but we should all be entitled to our opinion without being subject to an attack.

Moespy profile image
Moespy in reply to RICH22

Rich, Tall_Allen has given me the most accurate and timely advice out of anyone on this site. He gives me the knowledge needed to ask the right questions of my medical team and takes away much of my anxiety just knowing he is always available for my questions. Please try and refrain from disparaging this selfless giver of his time and knowledge to others. Thank you.

jfoesq profile image
jfoesq in reply to RICH22

Rich- I couldn’t disagree with you more when it comes to Tall Allen. His is the response I actively look for when anybody submits a post. He is not only incredibly knowledgeable, but he also provides numerous links to important scientific articles

Tall_Allen profile image
Tall_Allen

You should just follow his good advice and see what's up with a scan. PSA is just a biomarker.

MJCA profile image
MJCA

Thanks. I understand we should not beat people up on here!! Allen is an advocate of a friend of mine in LA.

BUT I COULD REALLY USE AN ANSWER TO MY REQUEST.

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

Question: Should I be freaking out? Answer: No...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/13/2020 8:06 PM EST

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

Thank you SIR!!

Apalutamide and Lupron do not help!!

I am sure they are adding to the freak out factor! I am trying to chill.

Hey guy! Freak out if you want to.. But you still have to deal with this shit. Are you saying that you had 14 yrs undetectable?

MJCA profile image
MJCA in reply to

No. Not at all. After my first 24 month treatment on Lupron, my PSA rose > 4 another 3 times. I was always put on Lupron.

In each prior instance Lupron dropped my PSA. Not now.

in reply to MJCA

Aye , aye ,aye .? Change is due maybe? I’m no expert by I’m pulling for you . 👍

MJCA profile image
MJCA in reply to

Thanks. I looked at your profile after your last post. You’re in San Rafael? I bet you’re originally from Canada?

in reply to MJCA

I was seeing old friends in Sonoma . Passed thru San Rafael . I went to part of high school there . We now are in Prescott Az.. peace ✌️

Collarpurple profile image
Collarpurple

wow All I know is he gave me advise for husband so when I went with hubby to Dr I ask and listen And it helped

MJCA profile image
MJCA in reply to Collarpurple

I read articles. I am in a good support group.

Moespy profile image
Moespy

I think your PSA is too low to freak out about PSADT. Could be a blip, I would wait until next month's reading before taking anything too far mentally. The scans will of course will tell you if you have anything to worry about. Best wishes. Jim

MJCA profile image
MJCA in reply to Moespy

Thanks. Yes I am remaining grounded.

jfoesq profile image
jfoesq

Would you mind indicating the treatments you had prior to Apalutamide? My last few PSA scores indicate I MAY be failing Lupron and Zytiga and doctor has mentioned Apalutamide as possible next step for me

MJCA profile image
MJCA in reply to jfoesq

Sure. If my memory serves me. Initially I was on Lupron for 2 years and Casodex for 6 months. 4 months after later I had brachytherapy, 60 days after that 36 sessions of IMRT. Over time, as my PSA rose, I was placed on another round of Lupron. This occurred (I believe) another 3 more times.

jfoesq profile image
jfoesq in reply to MJCA

WOW- so many different therapies. Glad they keep finding something new that works for you.

MJCA profile image
MJCA in reply to jfoesq

Me too!!

in reply to MJCA

Kept rolling MJCA!

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