Castrate resistant with Mets

[Fight11]

I’m all new to this with my husband. I know that each person is different. What is the life expectancy with stage 4 castration resistant and Mets to three areas of the bones? On an average. He just started taking Zytiga!!

[Magnus1964]

If zytiga is the first ADT drug he has Taken there are a lot of other drugs out there; i.e. casodex, xtandi, Lupron etc. He could get years out of these. Plus there are PARP inhibitors, Provenge and more.

[Fight11 in reply to Magnus1964]

He is on Lupron it’s not working

[tango65]

This is a review of different randomized control studies about the new anti androgens and overall survival in castration resistant cancer. They show the median overall survival for the different studies .

sci-hub.tw/https://www.ejca...

[Hidden]

You asked the same question in a previous post and many of us responded:

healthunlocked.com/advanced...

[Fight11 in reply to Hidden]

Thank you so so much !!! 🙏🙏🙏

[Fight11 in reply to Hidden]

Probably just to nervous sorry

[Hidden in reply to Fight11]

It's OK, most of us here have experience with this. We understand.

Based on my experience with the same castrate resistant prostate cancer, I think you can help yourself out a lot by learning to focus on the present tense and forget about what happens down the road, life expectancy, etc. No one has a future really, it's all hypothetical. I have found the biggest joy in my life learning to live in the Eternal Now. When people ask me how long I will live, I say "today"

Wishing the best for you.

[Fight11 in reply to Hidden]

I’m trying so hard to do that Gregg. It breaks my heart to see all of you going through this!!! 💔💔🙏🙏🙏

[Hidden in reply to Fight11]

Thanks. I'm fairly far into this now, over 2 years castrate resistant. It is a hard thing to go through.

But on the other hand, every challenge in life is also a learning opportunity. As much as I hate having cancer, it has taught me a lot of things like how to live in the present, make the most out of the time I've been given, appreciate the things I have in life, what's important and what isn't and much more.

[Fight11 in reply to Hidden]

What meds do you take? Do you get a lot of side effects? I hope your able to do things!!!

[Hidden in reply to Fight11]

Just ADT (Eligard) which is similar to Lupron and Zytiga. I also have been taking Zometa for bone strengthening. Side effects are mainly fatigue, but I am still active and can do quite a bit.

Zytiga has kept my PSA at undetectable for 2 years now. I still have "blood test anxiety" every three months when I go in because that's probably when I'm going to find out when it's not effective any more. I am getting better about that, but it's not easy.

[Fight11 in reply to Hidden]

I’m so so sorry Gregg. The Lupron isn’t working for my husband so they added the Zytiga. 🙏🙏🙏 for all of you

[Hidden in reply to Fight11]

The Lupron is still working for your husband, the cancer has just learned to live on a smaller budget of male hormones. Adding Zytiga further reduces additional hormones produced in the Adrenal Gland. Definitely don't want to stop Lupron.

[Fight11 in reply to Hidden]

Ok and thank you!! I asked for genetic testing on his cancer

[depotdoug in reply to Hidden]

Same here gregg57. I'm now only 11 months into zytiga(abiraterone)250mg +pred+ Lupron 90 day inj's and every 3 month blood test's(plural) gets my anxiety up and up and.

I should focus on today because my June 8-9th PSA went down from 1.032 to 0.75ng/mL. And 3 months ago my CT abs/chest/pelvis and NM total body bone scan were both, both! negative. That's focusing on 90 days ago, but that is good news.

2020 has been a good year for me. ADv PCa progression control is under control. And my RF catheter ablation to correct & fix AFIB was so so successful. I've been in NSR for now 99 days and happy counting. What else could I ask for. The results of my Sept 8th PSA/T-levels and CBC, MProfile blood labs.

Thanks for the positive focused attitude. We all need an attitude adjustment sometimes daily....

Depotdoug

[Fight11 in reply to depotdoug]

Doug are you castrate resistant

[depotdoug in reply to Fight11]

Yes absolutely. My 1st treatment for PCa was 42 IMRT radiation zaps circa: late 2005. Lasted till April 2008 started 1st ADT treatment Casodex bicalutamide and Lupron injects. Stopped that ADT in 2013 two years after my Sudden Cardiac arrest. 2nd present ADT treatments started September 2019 still going full speed ahead. Lupron 90 days, abiraterone and prednisone.

[Fight11 in reply to depotdoug]

I’m so so sorry!!! 🙏🙏🙏🙏

[depotdoug in reply to Fight11]

But, Manohar11,

I’m still exercising profusely once a day usually twice at my local Planet Fitness or YMCA gym. Loving 🥰 it. Strongest arms, upper body and leg strength I’ve ever had. Do I struggle with SE’s? Yeh, hot flashes sometimes. I’m staying active almost 12-14 hrs a day. My heart cardiac functions have improved a lot since my SCA May 2011. I’m gonna keep doing what I’ve been doing.

[Fight11 in reply to depotdoug]

Yes !!! 😀😀 . May I ask you are you castrate resistant.

[depotdoug in reply to Fight11]

Yes I’m castrate resistant.

[Fight11 in reply to depotdoug]

May I ask how long? What meds are you taking for it

[depotdoug in reply to Fight11]

By definition and my treatments:

“Castrate-resistant prostate cancer (CRPC) is defined by disease progression despite androgen depletion therapy (ADT) and may present as either a continuous rise in serum prostate-specific antigen (PSA) levels, the progression of pre-existing disease, and/or the appearance of new metastases.

Manohar11,

Understanding this helps me a lot.

I fall or trip into the last two categories. And I had a rapid progression rise of PSA.

Progression of existing disease(PCa) and appearance of metastases in my body. At the advice of my newest greatest IU Health PCP doctor he said I needed another PSA lab test 13 months ago. It was 17.7ng/mL. Not good. I went into action and made an appointment with one of IU Health urologists colleagues Urologist/oncologist for a consult. He Dr Boris said I needed the newest detectable 68Fa-PSMA-11 PET/CT scan that was in clinical research trials @ IU school of Medicine Indianapolis. I did PSMA PET 08/01/2019 that test found “Avid” hot spots on my prostate gland posterior, my pelvic lymph nodes and some abdominal lymph nodes. Not good but it found active cancer. One month September 2019. later I was with an IU Health MO Dr Adra who immediately started me on Casodex and Lupron(90days). FFW to Dec 10th last year, Dr Adra added Abiraterone (Zytiga)only 250mg and

Prednisone daily.

As of June 8th my CT and NM bone scans showed no evidence of detectable cancer. PSA was 0.75ng/mL.

That’s my complicated urological life. 50% of it. I’ve got more medical mysteries I’m trying to conquer.

Doug

[Hidden in reply to depotdoug]

Thanks. The only thing we can control is how we deal with things. I've found that things in life change a lot less in general than my ability to cope. I've also found that fighting and acceptance are not mutually exclusive.

[depotdoug in reply to Hidden]

Yes sir gregg I can’t fight my treatments but can improve my SE’s QOL drastically if I try. I’m really trying. Hard.

[Haniff in reply to Hidden]

👍👍👍

[Hidden]

On an average no life expectancy exists. Some men die in two years, others live for fifteen or so. Everyone is different. Don't make the mistake of trying to figure out how long your husband will live because NO ONE has an accurate answer. If you wan't to drive yourself crazy try and figure out life expectancy. I was supposed to be dead four years ago. Currently my PSA is undetectable. Furthermore, you asked the same question three weeks ago. Quit stressing yourself, it only makes matters worse.

[Fight11 in reply to Hidden]

What a blessing !!! 🙏🙏🙏🙏

[2dee]

Dunno but over 2 years ago with PSA over 1300 and mets pretty much all over skeleton they gave me 6mos.

I'm feeling pretty good, SOC working for me, PSA at 1.1 last test.

You likely have far more time than you think.

Educate yourselves, get a good team together, and enjoy yourselves all you can, as you can.

2Dee

[Fight11 in reply to 2dee]

What treatment seemed to work for you? What meds you on?

[2dee in reply to Fight11]

Lupron and Xtandi added 3mos ago when Lupron alone started to fail.

I've also been on my own concoction of Alkaline Therapy (1tsp baking soda, 1tsp pure maple syrup in cup water, 1hr before and 1hr after daily food for 10 days. Initial cycle 10days on 7off. Now 2yrs later 10days a month.), since just before Dx because it alone brought PSA down from 1303 and climbing a point a day down to 362 in one week. Anechdotal study of ONE.

Healthy diet, NO added sugar, meat, etc. Diet may or MAY NOT have any effect. Plenty of rants on both sides. Just being pro-active.

Exercise all possible. Attack pain and fatigue to get some sleep.

2Dee

[Hidden]

Hi, I have stage 4 castrate resistant cancer...I was diagnosed at 53 years old...I’m now 56, and I plant to live to 90!

It takes time to get over the shock and fear, but we learn to live with it.

[leo2634]

True we are all different but we share the same fight with the Beast. I've been on Zytiga almost three years now while its not a wonder drug its done wonders for me PSA has held steady at 0.1 the whole time. Im definitely not the same man I was three years ago due to the medication. The side effects can be life changing but the key word is life. I've also been on Elijah's, and a year ago Provenge infusions . Xgeva for bone Mets intermittent. Don't think about life expectancy live for the day. Besides there are Brothers on here that have gone on many years even before all of the new treatments that are now available to us. Never give up Never surrender. Leo

[Fight11 in reply to leo2634]

Are you castrate resistant as well? I always ask this question to everyone it seems that castrate resistant is more worrisome or from what I have been told!!!

[leo2634 in reply to Fight11]

Definition. Castrate-resistant prostate cancer (CRPC) is defined by disease progression despite androgen depletion therapy (ADT) and may present as either a continuous rise in serum prostate-specific antigen (PSA) levels, the progression of pre-existing disease, and/or the appearance of new metastases. All I know is when I started on the journey my Mets were all over my body too numerous to mention and my results have been good to say the least. After six months of treatments it progressed then after a year no progression and Mets have subsided and some are undetectable as are the lymph nodes that were invaded. Your best defense is to find a Doctor you trust literally with your life and don't read everything on the internet. All my Brothers here are in my prayers daily. Leo

[Fight11 in reply to leo2634]

We’re you considered castrate resistant

[Muffin2019]

Trust your docs, 2 years mets have healed, lupron not as effective so casodex is being added. Look at psa was 6.4 up slightly, work part time at 69, feel good. Plan on another 20 years or more, no one knows how long so dwell on today, next week or month and enjoy lifes small things. We gave to be stubborn and throw everything at this beast until it is defeated.

[Fight11 in reply to Muffin2019]

How long have you been castrate resistant

[Muffin2019 in reply to Fight11]

Not castrate resistant yet, there are many more drugs out there. Did he have chemo yet, I had it 2 years ago and not bad at all and still working part time.

[j-o-h-n]

A long time........ but you better watch out for yourself.... you're gonna worry yourself to drink.......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/14/2020 1:51 PM DST

[Fight11 in reply to j-o-h-n]

Omg I know I’m a nervous wreck!! I think I ask everybody on this panel if someone castrate resistant, not because I’m being nosy. My husband’s doctor didn’t give him very encouraging news about being castrate resistant. So I’m trying to ask everybody to hear some hopeful stories

[Hidden in reply to Fight11]

Omg I know I’m a nervous wreck!!

I know how that is, but I just want to encourage you that you can learn not to be a nervous wreck or at least be less of one.

I know because I learned.

For me, it always comes back to the moment and living in each moment. In the moment it doesn't matter whether you are castrate resistant or not. You are fully alive there, not in some stage of dying.

[Fight11 in reply to Hidden]

I wish I knew how to do this!!! I’m a

Mess. Especially with him being castrate resistant

[Hidden in reply to Fight11]

If I'm going to have a label, I prefer "alive now" rather than "castrate resistant".

[Fight11 in reply to Hidden]

🙂🙂🙂

[monte1111 in reply to j-o-h-n]

I am really worried. Almost out of drink .... too drunk to drive and I certainly can't walk.

[j-o-h-n in reply to monte1111]

Use your phone for delivery.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/14/2020 5:29 PM DST

[j-o-h-n]

I know cause we all are nervous wrecks..... please slow down... take some deep breaths.....

you have to be well for him and of course for yourself....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/14/2020 1:56 PM DST

[Fight11 in reply to j-o-h-n]

❤️❤️🙏🙏🙏🙏

[Scoofer33]

Since you seem to be asking everyone, I thought I'd offer the information right up front that I'm also castrate resistant! I took Lupron for two years before I became refractory (castrate resistant) and then began 6 months treatment with Xofigo (Radium 223) since lesions in my many bones mets were causing me pain. Having never had chemo yet, my body endured the treatments wonderfully. Since I had failed on my first form of ADT, namely Lupron, it was time to try the next form, ADT2. I began taking Zytiga (abiraterone acetate), which is very similar to Xtandi, another second generation Androgen Deprivation Therapy. My over-simplification of the process is that ADT1 basically tells a man's testes to stop making testosterone. ADT2 basically tells a man's adrenal glands to stop producing the extra testosterone they're making (as they sense the body is lacking testosterone). I don't fully understand ADT2, but it uses a Rand Ligand inhibitor, whatever that is, to do the trick. I've been on Zytiga since 10/22/18 and it's been very effective at lowering my testosterone and PSA. I'm currrently .01 on my PSA tests. Praying for peace for you and success for your husband!

[Fight11]

My Husbands Urologist said being castrate is very worrisome. Life expectancy at most is 3 to 5.

[ITCandy in reply to Fight11]

One member here that we haven’t heard from lately was on Zytiga alone for 8 years. After it fails, there are chemos, Xtandi and several other treatments. Your urologist should triple his estimates.

[Fight11 in reply to ITCandy]

Even being castrate resistant

[ITCandy in reply to Fight11]

Doesn’t matter. Sequencing Lupron and Zytiga or combining them up front buys you about the same time.

[Hidden in reply to Fight11]

Sounds like you need an oncologist, not just a urologist. Prior to the introduction of new drugs approved in the last 10 years (Zytiga, Xtandi, Provenge, Xofigo, Jevtana, Olaparb, etc), being castrate resistant on Lupron was certainly very worrisome. There are now many more options for your husband. Unless he has threatening mutations, neuroendocrine/small cell cancer, or other comorbidities, he should have many more years even if his QOL may not be the same as it is today.

My husband became castrate resistant to Lupron in early 2016. Since then he has had Provenge, Zytiga, and Xtandi. His psa is rising and he has some concerning mutations, but he is still active and has a few other options he can try.

Take a deep breath and get ready for a journey that isn't any fun for anyone. Even tho your husband has unfortunately passed a milestone in progression, castration resistance to Lupron isn't life threatening.....yet.

[Fight11 in reply to Hidden]

Thank you so much ❤️❤️🙏🙏

[Originalsnds]

I have been through quite alot with prostate cancer as many others on this site. We definitely are all very different on how we respond to treatment. End of year 2016 I started Firmagon treatments, being injections every 28 days in abdomin. That was working fine for 18 months. My urologist continued the program for another 6 months to finish out the 2 year program. Still my psa was rising. Next he was considering chemo. I originally had the 45 treatments of radiation to my prostate area. It had already spread outside the prostate and further at time of discovery. I did not feel comfortable with getting chemo without a second opinion. I went to a cancer center in Philadelphia Pa. over an hour away to be evaluated. Fox Chase Cancer Center. The urologist there immediatly transferred me to a medical oncologist there. The BEST THING that ever happened to me. I was evaluated with many tests. Put on Elligard which is a form of Lupron, injection every 3 or 4 months.. Things got better, then after a year it was starting to fail. I ended up with lots of Bone mets in my spinal column and Ribs as well as in my left hip (illiac) bone. Radiated the hip and thet cured the intense pain. He then put me on a clinical trial. Zytiga, 1000 mg daily along with prednesdone and Pacebo experimental drug, which is the correct arm, the real test drug. Proof of that was it messed with my blood. Hemoglobin dropped to 6.9. Hospitalized and ended up with several blood transfusions. Things are better now after a twice reduction of the placebo strength. I am doing well, still on the trial. Been fighting this cancer now short of 4 years in Nov this year. I feel very confident being in the Best Care possible at a Cancer Center with a MEDICAL ONCOLOGIST.

I am at a comfort level with my cancer even though it is dangerous as all cancer is. Our treatment is important and all are different.

I strongly urge everyone to get a medical oncologist for a second opinion. THE DIFFERENCE IS SO REAL

I feel confident and safe as everyone fighting this beast should. There are many more opportunities available in this fight as each may fail. You simply go on to the next method of fighting the cancer. I WISH ALL THE BEST CARE POSSIBLE IN THEIR JOURNEY IN THIS FIGHT TO CURE THIS CANCER. I PRAY FOR ALL OF US IN THE BATTLE.

[Fight11 in reply to Originalsnds]

May I ask who your Oncologist is in Philly