Castrate resistant : How long with... - Advanced Prostate...

Advanced Prostate Cancer

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Castrate resistant

Fight11 profile image
30 Replies

How long with being castrate resistant with Mets has Zytiga or Xtandi kept your cancer at bay? Our Oncologist said two yrs the most. Have any of you gone longer than that

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Fight11 profile image
Fight11
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30 Replies
LB100 profile image
LB100

My husband has his 6 year diagnosis anniversary in November

Three monthly Zoladex, Xtandi added in Jan 2018. He's very well, a little fatigue but no other side effects

PSA >O.1

6357axbz profile image
6357axbz in reply to LB100

Surly his original diagnosis was not castrates resistant prostate cancer?

Fight11 profile image
Fight11 in reply to 6357axbz

No that would be correct!! He just had his third shot of Lupron and his PSA just keeps rising so the oncologist said he’s castrate resistant

6357axbz profile image
6357axbz in reply to Fight11

My question was not to you. It was to LB100

Fight11 profile image
Fight11 in reply to 6357axbz

Sorry

Cleodman profile image
Cleodman in reply to 6357axbz

If you read her threads he has metastatic disease. Wow he is doing really well. Definitely not the norm.

Fight11 profile image
Fight11 in reply to LB100

Is he castrate resistant

Fight11 profile image
Fight11 in reply to LB100

How long has he been castrate resistant. I’m not sure is he castrate resistant

rpgilboy profile image
rpgilboy in reply to LB100

I've been on Zytiga for almost 7 years. PSA still undectible. Gleason9 in July 2009.

Fight11 profile image
Fight11 in reply to rpgilboy

Are you castrate resistant

Magnus1964 profile image
Magnus1964

I got 3 1/2 years out of zytiga and 4 years Out of Xtandi .

Fight11 profile image
Fight11 in reply to Magnus1964

Glad to hear that!!! My husband Oncologist told him he has never seen anybody go past two yrs with Zytiga being castrate resistant!!! How long have you been castrate resistant

Magnus1964 profile image
Magnus1964 in reply to Fight11

We will see at my next meeting with research doctor in September.

Fight11 profile image
Fight11 in reply to Magnus1964

Are you castrate resistant

Magnus1964 profile image
Magnus1964 in reply to Fight11

I don't know if I am totally done with Xtandi. I will Find out in September.

Fight11 profile image
Fight11 in reply to Magnus1964

Are you castrate resistant?

Magnus1964 profile image
Magnus1964 in reply to Fight11

I will say yes and see what my tests show.

FinalBossMatt profile image
FinalBossMatt

It's funny the Oncologist keeps saying, "Castrate Resistant" when even before my cancer went that route, the average time on a drug is about 2 years before the cancer figures out a way around the drug.

Fight11 profile image
Fight11 in reply to FinalBossMatt

My husband was on Lupron about 18 months and psa started to rise

mrscruffy profile image
mrscruffy

I was diagnosed 5 years ago, had prostate removed then found mets in spine and pelvis. Genetic testing showed that I have BRCA2 mutation. I have been on Lupron/Zytiga for 18 months now. Can't say enough about ignoring life expectancy. It stresses family and friends that are part of my care team, they all think I will live 20 more years. Not realistic but that's what keeps them going. I immediately retired and have been traveling like there is no tomorrow. I hired a personal trainer that has knowledge of my condition. After 12 months of muscle loss she has me gaining muscle back slowly but surely. I am the healthiest dead man alive and I attribute it to my nutrition as well as exercise, no science behind it but I think it helps.

Fight11 profile image
Fight11 in reply to mrscruffy

🙏🙏🙏 so are you considered castrate resistant

mrscruffy profile image
mrscruffy

I believe so, Lupron didn't do the complete job so she added Zytiga. My PSA is undetectable and am doing very well. Unfortunately, I have a bunch of side effects but have managed to keep them under control. Currently I take 32 pills a day including supplements. Some of these are to counter act the side effects. Forewarned is forearmed, you have a tough road ahead of you

Cgjunior profile image
Cgjunior

Zytiga failed me after just 4 months. Psa never went below 4.

Fight11 profile image
Fight11 in reply to Cgjunior

What are you on now?

Originalsnds profile image
Originalsnds

What area do you live in ?

Fight11 profile image
Fight11 in reply to Originalsnds

Massachussetts

Originalsnds profile image
Originalsnds in reply to Fight11

I know there are great Medical Oncologists in that area. Your husband is in good hands. Keep in mind that we all are so different when it comes to fighting this decease. I am 72 years old and had several changes in treatment since I was first diagnosed in Nov 2016. Had a PSA of 28 and Gleason score of 9, Not a happy day for me on that news.

I put myself in the care of experience. Fear yes, much of it.

However through these last 4 years a lot has happened and I learned so much about cancer. This site has been very instrumental to me. There is so much great information on here that I know my future is, I'm going to live longer than I thought in the beginning.

Remember that every treatment has a possibility of failure. And that does not mean that we are in serious trouble.

Seems usually after 18 months to 2 years. Some cancer cells get smarter to figure a way around the current drug treatment. Then we start another treatment that can take over and attack those cells. Each time it has worked for me. And many others as well. T

here will always be new and more aggressive treatments coming out. This is what makes me feel safe in fighting this decease. The technology today is above and beyond to help the fight in Prostate cancer. We couldn't be at a better time to have all the options available to us. And yes I am both Castrate resistant and Castrate sensitive. I do not worry about that fact as treatments are made to handle that .

Live for Today and enjoy each day God gives us. Your husband and I as well as all the rest of us will enjoy a longer life due to all the great Science, understanding and treatments that we have available to us. I am so thankful for that.

I will pray for your husband and you as I do for all of us. Go and do a lot of things together with your family, enjoy life to its fullest, Let the Doctors and Science lead the way. Your Husband is in Good Hands

Fight11 profile image
Fight11 in reply to Originalsnds

May I ask how long you have been castrate resistant for and what has worked best for you? I’m trying to fight with the ins co to go to Dana Farber and have yet to get a response. We have to fight for everything with his Ins and lots of denials

Originalsnds profile image
Originalsnds

I have been castrate resistant and castrate sensitive for over 2 years

The combination of Zytiga 1000 mg daily along with Prednisone 5 mg and my 3 month injections with Eligard which is a form of Lupron. This has been good for me . It might not be the mix for another as we are all different.

PSA is at 0.26 and I am very happy about that.

Keep in mind, everyone responds different to treatments. I have no side bad effects .

Only thing I deal with is appetite issues. taste of food, and my eating has cut down quite a bit. Could be a combination of the cancer and the treatments. I am ok with this as it has not really harmed me in any way.

I do know that some day, month, or whatever this too may fail. Then I move on to the next treatment.

I never worry about HOW LONG do I have. That is up to God no matter what we deal with in life.

As I said before. Live your lives at the fullest. ENJOY ever day.

I plan on being here for a long time. Think POSSITIVE

Originalsnds profile image
Originalsnds

I also want to remind you that this is now 4 years a fight with cancer.

I had 2 different rounds of radiation, 45 treatments to prostate, and then 10 treatments to left hip, Illiac

Have cancer in my Bone marrow in my hip as well.

I have many Bone Mets in my Spinal column form my neck and a little toward my left shoulder. Have bone mets in my ribs.

So far all is holding.. Not spreading further.

I do have many tests and Blood work coming up end of Sept.

This is to continue to monitor my progress on the cancer treatment.

If something would change for the worse, treatment would change.

I have the UTMOST confidence in my Cancer team.

You have to put your trust there. It all starts there. POSITIVE THINKING

and feeling great that you have great care and all will be ok..

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