Thankful for finding the Group - Advanced Prostate...

Advanced Prostate Cancer

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Thankful for finding the Group

BigTex3 profile image
27 Replies

Good morning everyone. I recently stumbled across this group and am so glad to find others in the same boat as myself. Diagnosed at 51 with stage 4, Gleason 9 with bone Mets pretty much everywhere and PSA at 30. Started with zytiga/prednisone/zolodex for 3.5 months. New Pet scan showed reduced soft tissue and lymph node issues but an increased activity in the bone Mets. Switched to xtandi/prednisone /zolodex. PSA is down to .36 and bone pain significantly reduced. I’m very hopeful about the future and reducing this disease. I’m also thankful to have a group to join together with in this fight. I will continue to pray for all of us on this journey.

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BigTex3
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27 Replies
Darryl profile image
DarrylPartner

You might find this helpful too. Dec 1-21 prostate cancer patient conference online Malecare.org/conference

treedown profile image
treedown

Welcome

SPEEDYX profile image
SPEEDYX

Welcome BIG T....together we will fight the battle and we will persevere....all of us here contribute their experience and support each other...you will get a variety of input from humor to new science and everything in between!!!...pray all goes well!!!

Tall_Allen profile image
Tall_Allen

FYI- There is a clinical trial with results expected in a few months combining docetaxel and enzalutamide. You may want to ask your medical oncologist to call the lead investigator, Earle Burgess at Atrium Health in North Carolina, for an informal assessment of his impressions:

clinicaltrials.gov/ct2/show...

atriumhealth.org/provider-p...

He may not be able to provide statistics, but he may be able to answer whether they are seeing some full remissions and what the toxicity drop-out rate has been.

Welcome BigTex3.. good stumble .. I was 53,#4 ,.I can relate . I’ll be 60 in May . Good luck . Keep morale high !😷🏋🏽‍♂️

JPnSD profile image
JPnSD

Welcome. This site has been a BIG help for me. I hope you find it a help as well. Great that you found it. I wish you a safe journey. Take care.

Lettuce231 profile image
Lettuce231

Hello BigTex, are you sure that you really want to be in the same boat as all of us 😂, have you met some of them on here 😉............ Love your positive attitude, keep fighting as we all do.

By the way your turn to scrub the decks tomorrow morning and all the life jackets are stored at the top of the mast 👀😳.

Merry Christmas to you and your family.

Phil

BigTex3 profile image
BigTex3 in reply toLettuce231

Thanks Phil as a retired Army guy I understand how the details work. I’ll get right on getting them cleaned up. Merry Christmas to you and yours as well.

Bodysculpture profile image
Bodysculpture

Wellcome my friend You are not alone

Similar diagnosis

Stage 4 Gleason 9 PSA 13.5

Hormone suppressant 3 monthly finished Docataxal and Radical radio therapy OSA now 0.55

November 2019

Doing really well I dont understand all the jargon bug my oncologist is quite pleased

Competative bodybuilder 58 years old still training today

And gratefull

maley2711 profile image
maley2711

I'm sure you are not glad to find others in the same boat???

BigTex3 profile image
BigTex3 in reply tomaley2711

I wish none of us were in this boat and if it could only be me I would take it for all. Unfortunately that’s not possible. Definitely meant that to mean we can support one another.

maley2711 profile image
maley2711 in reply toBigTex3

Of course.....just a quick chuckle when I saw that!! Laughter best medicine!!

Faith1111 profile image
Faith1111

Welcome BigTex3, There are wives, girlfriends, sisters, partners etc on here as well looking to support their loved ones. You will find a wealth of information and a variety of personalities. There are some incredibly intelligent people here as you will see. Their input has helped guide my brothers treatment. So relax and enjoy the holidays you are in good hands 💞🙏🏻🎄

Dale150 profile image
Dale150

Welcome. Lots of information and opinions on a disease we are all fighting. Stay strong and enjoy each day that comes.

dadzone43 profile image
dadzone43

Love your spirit, fella. Welcome.

larry_dammit profile image
larry_dammit

Welcome to our club Warrior, there are no bounds on the answers you will get from your fellow warriors here. God be with you. 4 1/2 years and counting. Stage 4 with Mets and all the goodies here. 🙏🙏🙏

MateoBeach profile image
MateoBeach

Welcome BigTex. And thank you for your service, and this from an old jar-head. You will get a mix of ideas and perspectives including the most rigorous and cutting edge analysis of the best clinical trials. (Such as from Tall_Allen above. His suggestions are always worthy of careful consideration.) Several of us, including myself Dig into the fringes of cancer science seeking gems of approaches that might be added to ( not substituted for) the most proven standards of care SOC. There is a rich and varied menu every day on various supplements and dietary considerations and near universal agreement on living with PC with a positive attitude and all the exercise your body can do. And of course the wonderful humor. Paul

Judymin profile image
Judymin

Welcome, I am wife of warrior, who was diagnosed gleason 9, psa 22 age 53. It has been almost 10 years, but now after doxetaxol, psa now up to 28.8, not sure of next step, but there are a lot of therapies out there for you still. Good luck!!!

WVtwinsmama profile image
WVtwinsmama

Welcome, my husband was 51 when diagnosed, stage 4, Gleason 9 three years ago. This site has helped tremendously see what others have tried, successes, cutting edge trials and layman descriptions of sometimes complicated explanations. I’m very grateful for stumbling upon it early in our journey!! Best of luck!

BigTex3 profile image
BigTex3 in reply toWVtwinsmama

I’m going to have my wife sign up on here also. Your story is where we are now only just 6 months into treatment.

We're so glad to have you here Big Tex. We are all fighting the beast.my story is similar to yours only I've been at this for 18 years only on ADT the last six now on eligard and zaytiga just started and hope the next PSA shows this idea is working . I like the fact that you switch to Xtandi and you and your psa has a dropped. I like you think this site is the best thing that ever happened to me in my journey. So many very smart and sharing individuals fighting the same beast.Stay in touch

God bless you

BigTex3 profile image
BigTex3 in reply to

I started with Abiraterone/prednisone and it lowered my PSA but not the lesions. I know everyone reacts differently but the Xtandi/prednisone has reduced the need for pain meds.

in reply toBigTex3

All great newsMerry Christmas

Welcome BigTex3! Merry Christmas. This is a great support group...and Malecare is fantastic!

ragnar2020 profile image
ragnar2020

Hello BigTex3,

Welcome to the over site. You’ll have a place to ask questions and follow others’ progress. You’ve found a good place with a group of like minded guys trying to get and stay well.

Keep reading and questioning,

Jeff

Fitzbruce1 profile image
Fitzbruce1

Hey Tex-You will continue to see so many great posts on this site. We have some unpaid researchers on this site that give us thought provoking issues that our doctors office visits couldn’t possibly cover. Being positive and exercising are both important. Good luck in your fight.

Scoofer33 profile image
Scoofer33

Welcome to the club that no one wants to join! I pray that you'll be able to keep an attitude of gratitude even as you're prescribed multiple drugs which can steal your joy. Welcome!

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