What's next after Lupron and Zytiga? - Advanced Prostate...

Advanced Prostate Cancer

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What's next after Lupron and Zytiga?

BFOFARMO profile image
30 Replies

Hi all, I've been on Lupron since April '17 and also started Zytiga in Sept '19. Last PSA on Feb 9 was .01. What is the next treatment? Clinical Trial?

Thank you, Richard

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BFOFARMO
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30 Replies
Tall_Allen profile image
Tall_Allen

Why are you asking about a "next treatment" with such excellent PSA results?

westof profile image
westof in reply to Tall_Allen

Tapered off Z and P in January and last Lupron shot was last summer. PSA still <0.014 and I feel great. However, I still miss my libido! At 72 it has become a distant memory... NOT!😁

DarkEnergy profile image
DarkEnergy in reply to westof

I was initially diagnosed at age 52, did active surveillance, then at age 58 all hell (metastasis) broke loose. Looking back, would do it again, got 6 years of fulfillment, if you know what I mean..

BFOFARMO profile image
BFOFARMO in reply to Tall_Allen

Thank you Allen, apparantely I was 'spoiled' with the little more than a years worth of <0.01 and automatically 'assumed' the worst with a slight uptick in my PSA.

Magnus1964 profile image
Magnus1964

That's a great PSA reading. Stick with yourself current treatment untill you get three consecutive rises in your PSA. You are doing great.

BFOFARMO profile image
BFOFARMO in reply to Magnus1964

Thank you Magnus for redirecting my negative thoughts; just what I needed!

pilot52 profile image
pilot52

Hey dude relax, we need to kick the can down the road and you are doing great...There are a lot of new therapies coming on line so enjoy ....Blue Skies , Sky King and Penny (woof)

BFOFARMO profile image
BFOFARMO in reply to pilot52

Good advice Pilot, just wondering what direction to kick that can.

You are doing great. Breath that in and do something good for someone you love today . Focus on good things . You are a rock star 🌟

BFOFARMO profile image
BFOFARMO in reply to

Thank you 5to0 for keeping my head straight and appreciating the good things in my life

Olivia007 profile image
Olivia007

My father went on xtandi and it lowered his PSA after Zytiga stopped working xtandi was so good at keeping his PSA levels low he stopped it and the numbers continued to stay low for about 9 months and now they r slowly rising he’s back on it!! He stopped it because he couldn’t handle the side effects but he’s 83 and very sedentary. Hope that helps

BFOFARMO profile image
BFOFARMO in reply to Olivia007

Olivia, thank you very much for your lovely response. I wasn't sure what my next option was; I was under the impression from my Doctor that it was Clinical Trials. It's comforting that Xtandi may be an option, and that it helped your father. I have another PSA on 03/23 and a video appointment with my Doctor on April 4th. I will ask him about Xtandi as a possible treatment if needed. All of my best to you and your Father for continued health

SeosamhM profile image
SeosamhM in reply to BFOFARMO

Your numbers are great, BFOF, but I understand wanting to know the next steps if change comes that necessitates new treatment (i.e., Zytiga failure as determined by rising PSA and scans). Developing "standard-of-care" would be to challenge the cancer with chemotherapy prior to moving on to Xtandi. Continued fortune on your numbers, though - it may never happen! - Joe M.

BFOFARMO profile image
BFOFARMO in reply to SeosamhM

Thank you Joe for your words of encouragement. I've added your thoughts on "standard of care" to my list of possible questions for my doctor. A message board forum is good because of its members, I think I'm going to enjoy this one.

SeosamhM profile image
SeosamhM in reply to BFOFARMO

Agreed....this board has been a godsend for me. We are never alone in this. Cheers. - Joe

Olivia007 profile image
Olivia007 in reply to BFOFARMO

Your welcome there are so many options and clinical trials sometimes u may have to do your own research and educate yourself sometimes the doctors don’t know everything that’s available out there unless they have the disease or someone they love has it just because they are the ones to help patients and treat it they don’t have time to read Everything that’s working or available or going to become available also sign up for different prostrate websites I get emails about a lot of things happening around the world before my dads doctor even hears about it. Good luck 👍

BFOFARMO profile image
BFOFARMO in reply to Olivia007

Thank you Olivia. Yes, you are correct in that we have to do our own research and educate ourselves on this disease and the treatments for the many different phases of this cancer. There's too much information for li'l ol' me to process. Which is why I joined this forum. Not only have I received needed information, but also received are the many well wishes and little nudges to a more positive outlook because my number ARE good; and I'm better when I realize that.

Olivia007 profile image
Olivia007 in reply to BFOFARMO

👍🙌⭐️

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

Hello Best Friend Of Females,

Now - Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/04/2021 5:00 PM EST

BFOFARMO profile image
BFOFARMO

Hi John, hmmm I answered most of the questions asked when I signed up to HealthUnlocked and they're on my Profile page. I'll be the first to admit that I'm not tech savvy and don't know how to enter most of the info you want into my Profile. So...my Profile page shows my age is 64, I entered the zip code 95747 which is Roseville, CA. but the Profile page only shows my location as United States. Under 'Medical conditions and associated treatments' the Profile page does show that I have Prostate Cancer, diagnosis date April 2008, current treatments ADT, past treatments Prostatectomy, IMRT radiation. I can't enter my treatment center which is Kaiser-Permanente (I have a friend who says he wouldn't take his dog there). Unable to enter my PSA which at its high was 15, and or Gleason score 3+4=7. Unable to enter current medications 6 month Lupron injections, Zytiga, Prednisone, calcium, d3, atorvastatin, and Lisinopril. As mentioned I updated my Profile page with as much info as it would allow; as far as a 'Home Page', I have no idea on where this is located or how to update it. If you could offer guidance, it would be appreciated, and I'll try to accommodate.

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

If you know how to copy and paste, it's as easy as that....

mCRPC = metastatic Castration Resistant Prostate Cancer <<--- already on your home page

Just copy from your post and paste under what you posted on your home page.

To get to your home page just click on your icon. Which looks like an old 33 1/3 vinyl record.

COPY AND PASTE THE FOLLOWING:

My age is 64, I am in Roseville, CA. I have Prostate Cancer, diagnosed April 2008, current treatments ADT, past treatments Prostatectomy, IMRT radiation. My PSA which at its high was 15, and or Gleason score 3+4=7. My current medications 6 month Lupron injections, Zytiga, Prednisone, calcium, d3, atorvastatin, and Lisinopril.

Hopefully this helps!!! Keep posting....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/05/2021 6:03 PM EST

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

John,

Thank you very much for the tutorial and guidance. I often need a little help, because I’m often not as smart as I pretend to be :(

Richard

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

You're welcome.

My saying is "I'm not as dumb as I look"...........but close enough......

Keep Posting we need guys like you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/06/2021 7:15 PM EST

fireandice123 profile image
fireandice123

Your situation sounds very similar to mine. I was on Lupron and Zytiga/prednisone and my PSA fell to 0.1 after about 3 months and then after 5 months fell to zero. At that point I'm asking what's next. It's nice to be down to zero but I wasn't happy with the side effects though by comparison they weren't too bad actually. After about a year my oncologist and I decided that I would come off the meds and monitor my condition. It was so nice to be off the meds.

After 9 months my PSA started to creep up a bit and I had scans that indicated my cancer was active again but had not spread further.At that point I went back on Lupron only and consulted a radiation oncologist and elected to have a round of radiation. There was a relatively new trial from the UK that indicated that patients in my situation could benefit by radiating the prostate even though my cancer had metastasized to my pelvic bones. The pelvic mets were zapped as well. That was about a year ago. I'm still on Lupron and my PSA continues to fall. It was 0.2 at my last appt. The plan is to come off of it in October assuming my PSA continues to stay low. We're hoping for a period of remission.

Here's info on the trial: cancerresearchuk.org/about-...

BFOFARMO profile image
BFOFARMO

Hello fireandice, good to hear from you and thank you for your response. I don’t think I’m a candidate for the UK trial as I had a prostatectomy and no longer have a prostate. I’m glad that the trial worked for you and you’re rid of the pelvic mets. Androgen Deprivation Therapy can be devastating in so many ways, but it’s keeping me alive and I’m grateful. It’s good to hear that your PSA is headed in the right direction and that you maybe coming off Lupron. Wishing you good health and hoping to hear from you again, Richard

Cooolone profile image
Cooolone

Diagnosed in 08' ... Subsequent treatments, and then ADT since 17'... PSA blip on radar screen of .01ng ... and the question is...

Your anxiety over a small blip as to immediate response or treatment in regard to what's next?

Have a beer and celebrate! You are doing great! Keep an eye on things but don't sweat it. Pay attention to your PSA doubling time. If it starts approaching .5ng, the the concern should be where to get a G68-PSMA-PET scan... But that could be years from now in your given situation... So again, have a beer, relax, breathe! Do what you've been doing because it's working!

Best Regards!

BFOFARMO profile image
BFOFARMO in reply to Cooolone

Thank you Cooolone. I’ve been getting that gist from several commenters, and you’re all correct in that I need to relax; problem is, I’m serious by nature! I like your ‘handle’, I’ll try harder to be a ‘cool one’ too. Richard M.

dougnola profile image
dougnola

Hi Richard,

I’ve been in the same regimen since July 2017 with same results. I agree it’s so small a jump, you should wait till you see some consistent rise/doubling. Your psa is still great right now! My oncologist has told me a number of time that when if my psa starts to jump the very first thing they would try would be to merely tweek my prednisone dose (I assume you’re on a steroid due to Zytiga). Of course check w your doc first but that’s what I’ve been told and have read. ✌️ DougNOLA.

BFOFARMO profile image
BFOFARMO in reply to dougnola

Thank you Doug. I’m ‘jumpy’ because every regimen had eventually failed after a ‘small blip’ in my PSA. Thanks to everyone’s comments, I’ve learned that’s not necessarily the case in this instance. Thank you all for being ‘a voice of reason’. Richard

dougnola profile image
dougnola in reply to BFOFARMO

I’ll be calling on you on the day mine blips too! :)

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