Undetectable 5 years and 2 months aft... - Advanced Prostate...

Advanced Prostate Cancer

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Undetectable 5 years and 2 months after DX of Metastatic PC w/ a PSA of 209

poofers profile image
44 Replies

Hi Battle Brothers and Sisters.

I don't post much, but always follow your posts. I just had my labs done today and as usual I was suffering from pre-test PSA anxiety the past few days. I was needless to say delighted and feel very lucky that I am still undetectable. If somebody told me when I was DX'ed that I would still have an undetectable PSA level after 2 years let alone over 5, I would have thought that they were being over optimistic at best. Point is that it can be done. So for you newly diagnosed brothers, please know that you have a long life ahead of you..Still on monthly Firmagon injections and daily 50 MG of Casodex. I feel totally normal most days and exercise vigorously every other day. Repeat PSA in 4 months and Dr. told me that if I am still undetectable we can discuss a HT vacation.

Take care and most importantly be well

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44 Replies

Sometimes it's better to be lucky than good. :)

in reply to

I’ll take luck like that please?

LearnAll profile image
LearnAll

Bro Poofers,

You mentioned in past that Mediterranean diet rich in fruits and veggies PLUS vigorous excercise helped you.

Do you have some more secrets to share with us to keep our PSA at 0.2 ?

poofers profile image
poofers in reply to LearnAll

Red wine and dumb luck...I drink a glass every night with dinner...not sure it's helping but it sure tastes great

Shooter1 profile image
Shooter1 in reply to poofers

Red wine and PSA dropped at last test for first time in 18 mo. First clear scans since I started this trip.

in reply to Shooter1

Fly low amigo.😎

LearnAll profile image
LearnAll in reply to poofers

It might be helping because it contains many polyphenols and resvesterol, I use grape seed powder to minimize the sugar intake and still get most of the benefits. Also, juice extracted pomegranade seed powder (Anardana) can help too. A good amount of turmeric, Ginger, Black pepper powder(pepperine), Cayenne pepper powder (capsaicin)

and of course one of the cruciferous veggy (cabbage, Brocolli, Cauliflower or Radishes)

I would like to increase my walking from 4 miles a day to 6 miles day...working on it !

Fantastico! I too am still flying under the radar ..3-15 will be my five year dx. The proof is in the pudding .Or in the poofs for you . Let’s go for another five ?🤣

Haniff profile image
Haniff

Well done guys

Really wish I can report the same but my story still continues. Not giving up though... enjoy the ride guys.

If there’s anything you’re doing that giving such great vibes and positive feelings, please share.

My best to you and all that are undetectable

Haniff ❤️

in reply to Haniff

Eating super healthy

Wonderful news.

I checked your previous posts, but didn't see if you still have your prostate and if you are having any specific treatment for your bone Mets, such as Xgeva. Also, where have you been treated?

Wishing you continued success.

poofers profile image
poofers in reply to HopingForTheBest1

Still have the prostate as my disease had spread to lower spine. Also on 6 month dose of Prolia to help with mild HT related bone density loss. Mets have cleared but we all know all too well the demon is just sleeping for the time being

in reply to poofers

I’m on prolia also ..

in reply to poofers

Are you on low dose estradiol patch?

Boywonder56 profile image
Boywonder56 in reply to poofers

Year later just wonder how your doing our historys are similiar..except ive been on lupron/erleada sinc 2/17....psa just hit back to back .1's...after <.02 for 3 yrs...so very familiar with psa stress it finally came...hopefully its a slow climb...

larry_dammit profile image
larry_dammit

Great news. Just had mine Tuesday and at 42 months my PSA is still undetectable. Fighting this monster every day. 🙏🙏🙏

in reply to larry_dammit

That’s great Dammit ! ✌️😂

rm9x profile image
rm9x

Congratulations and thank you for posting. I'm just starting my trek and while I appreciate all the posts and information, it's really nice to hear some positive news.

EdBar profile image
EdBar

I’m coming up on my 6 year anniversary next month. God does work miracles!

Ed

in reply to EdBar

👏🏼👏🏼👏🏼👏🏼👍

cancervictim profile image
cancervictim

Thanks for sharing. What was your Gleason score?

poofers profile image
poofers in reply to cancervictim

8

Great news

dadzone43 profile image
dadzone43

The Summer Day

Who made the world?

Who made the swan, and the black bear?

Who made the grasshopper?

This grasshopper, I mean-

the one who has flung herself out of the grass,

the one who is eating sugar out of my hand,

who is moving her jaws back and forth instead of up and down-

who is gazing around with her enormous and complicated eyes.

Now she lifts her pale forearms and thoroughly washes her face.

Now she snaps her wings open, and floats away.

I don't know exactly what a prayer is.

I do know how to pay attention, how to fall down

into the grass, how to kneel down in the grass,

how to be idle and blessed, how to stroll through the fields,

which is what I have been doing all day.

Tell me, what else should I have done?

Doesn't everything die at last, and too soon?

Tell me, what is it you plan to do

with your one wild and precious life?

—Mary Oliver

Muffin2019 profile image
Muffin2019

How long have you been taking casadex and was there any side effects, might have to do it in the future, any information is helpful. Did chemo in 2018, lupron every 3 months, psa was ,6, went to 4.1, then 3.9 and 3.6, waiting on blood work yesterday. Last month's scan was great, no disease progression and no new Mets.

wagscure259 profile image
wagscure259 in reply to Muffin2019

I’ve been taking 50 mg Casodex for nearly 3 years along with Lupron and now monthly degarelix . May have increased my gynecomastia . The bicalutamide ( casodex ) strongly suspected to be the source of my peripheral neuropathy ( never had chemo ) but without confirmation or consensus amongst physicians at MSK NY . Just one case such as mine should not determine your decision to use it or not use it of course in consultation with your MD .

Rainyday12 profile image
Rainyday12

Thank you thank you! My husband just recently diagnosed with PSA of 623 and almost three months later his PSA 1.5. Thought he was beating down deaths door but your post give us some hope! Thank you so much for sharing!

poofers profile image
poofers in reply to Rainyday12

He is responding very well considering how high it was.. Mine dropped to from 209 to1.2 after the first months and it slowly kept dropping until it reached undetectable 5 months later. Initially started with Firmagon and Casodex.. After 3 months while the PSA kept dropping, my doc took me off Casodex. Unfortunately that was a short vacation because without Casodex, it inched up again the next month so he put me back on Casodex and the month after that, it went to undetectable, where it remains to this point 5.2 years later. I initially rejected first line chemo because, after the first month into HT treatment my Circulating Tumor Cell blood work was at zero.

nobaday profile image
nobaday

How old are you now? I’m 58 just got back from Cuba all inclusive, wine, rum, cervezas, snorkelling and tennis...I have not changed my alcohol diet and am PSA <0.008 26 months in.

Keep exercising and having fun and eating good food and ‘ healthy ‘ drinks.

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

did you get to see my 58 chevy?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/14/2020 11:08 PM EST

monte1111 profile image
monte1111 in reply to j-o-h-n

Wrecked my 59 Chevy. Had it 10 days. Loved that party car! The carnival was over.

j-o-h-n profile image
j-o-h-n in reply to monte1111

10 days? I guess the new car smell got to you........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/15/2020 7:24 PM EST

monte1111 profile image
monte1111 in reply to j-o-h-n

Lot of smells in that car. New car smell was not one of them.

j-o-h-n profile image
j-o-h-n in reply to monte1111

Let's see now: Your Old Spice after shave lotion, The girls Blue Waltz perfume, Her lipstick, One Joint, McDonalds hamburger, A&W Root beer. Bayside Breeze Car freshener hanging from the windshield. That smell was like being in heaven....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/18/2020 9:43 PM EST

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

Oops... I forgot about the smell of twinkies on her breath.............

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/19/2020 6:09 PM EST

poofers profile image
poofers in reply to nobaday

61 years young

tallguy2 profile image
tallguy2

You are doing well!

I am 8 years since Dx. Gleason 9 and Stage IV from the get-go. So much for waiting for the pSA to hit 4.0 before taking action.

RP and radiation 2012

Eligard 2012-2016

Chemo 2018

More radiation 2018/19 after scans showed occurrence and PSA started climbing

Provenge 2019

Started Phase II clinical trial Jan 2020 (abiraterone plus apalutamide).

Will keep my profile updated.

Swimming laps, traveling, drinking. Switched to (mostly) anti-inflammatory diet Nov 2019.

Living the dream!

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

Are you guys the male answer to Hooters?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/14/2020 11:10 PM EST

GeorgesCalvez profile image
GeorgesCalvez

You are a very lucky guy, the average for first line ADT is around two years so you are well ahead of the game.

Miket218 profile image
Miket218

Thanks for sharing that wonderful news! praying you will never see a rise in PSA.

Helpmate77 profile image
Helpmate77

How are you doing now? My husband is in a similar situation.

poofers profile image
poofers in reply to Helpmate77

Still great 8 years later

in reply to poofers

Are you still on HT? If yes, curious as to what your MO prescribed next.

Helpmate77 profile image
Helpmate77 in reply to poofers

Thanks for answering!

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