Options after Lupron : I’ve been on my... - Advanced Prostate...

Advanced Prostate Cancer

22,993 members28,546 posts

Options after Lupron

DonM253 profile image
17 Replies

I’ve been on my PCa journey since 2009 I was 42 and I’m now 58.. Initially, summer of 2009 I was treated at Loma Linda with proton radiation. That failed and in 2012 I had a prostatectomy at the National Institute of Health. My oncologist after was Dr. Snuffy Myers until he retired. I had a pretty good ride using xtandi for a few years keeping my PSA low. A couple years ago xtandi failed and I started Lupron. My recent PSA’s is trending upward. I’m now at .49. I’ve also had a PSMA showing the cancer has not reached any bones but is localized in pelvic prostate bed region. My question is what are my options after lupron? Anything new modalities? Looking for options. Thank you.

Written by
DonM253 profile image
DonM253
To view profiles and participate in discussions please or .
Read more about...
17 Replies
MJCA profile image
MJCA

Hi Don,

Like you my PCa journey started at a young age; I was diagnosed at age 45. I am surprised that you were not put on Lupron when you were first diagnosed. Most remain on Lupron. There may come a time when your PSA begins to elevate. At that point, you are referred to as castration resistant. The next treatment would normally be to place you on second generation meds to keep your testosterone level low. These are the drugs known as Xtandi (enzalutamide), Erleada (apalutamide), Nubeqa (darolutamide) or Zytiga I believe the generic is abiritarone. Ironically these meds have to be taken in conjunction with Lupron. Take a look at my bio; I have been fighting this mofo for over 19 years. In the LA area there are two major medical facilities for prostate cancer: City of Hope and UCLA.

Best of luck.

Mark

jazj profile image
jazj in reply toMJCA

How long did the Lupron work for you?

DonM253 profile image
DonM253 in reply tojazj

About 2 years

jazj profile image
jazj

You don't have confidence in your Oncologist to answer that question? If so, get a new Oncologist. But I do understand using this forum as sort of getting a third opinion (as I'd consult with two Oncologists if I were you.)

Usually combining a second generation testosterone receptor blocker like Xtandi with a Testosterone production blocker like Lupron is one avenue. If you've done both individually that may be an option to try. When doing so you might consider using two different drugs like Nubeqa instead of Xtandi (with a bit better side effects profile) and Orgovyx instead of Lupron which is pill form with less cardiovascular risks.

Really sounds like you aren't getting care from a center of excellence.

Curious were your scan spots in your lymph nodes or elsewhere in your pelvis?

DonM253 profile image
DonM253 in reply tojazj

Thanks for your input. My lymph node removals were only in my pelvic area. 18 in total. About 1/3 showed cancer other was clear.

dhccpa profile image
dhccpa in reply tojazj

Often even centers of excellence differ, and individual doctors at the same institutions.

Some use Sartor at Mayo. He uses BAT, whereas Eugene Kwon, to my knowledge, does not.

My understanding is that many or most docs at Mayo do not use Provenge, whereas UCLA does.

Same, of course, with individual doctors across the nation.

DonM253 profile image
DonM253 in reply tojazj

It’s not that I don’t have confidence in my MO. Many don’t think out of the box and follow the standard repertoire treatment plan. Looking for outside info so I can have a productive mtg with my MO early December.

Sisto profile image
Sisto

Provenge could be another possibility if your insurance is cooperative. I had it five years ago in similar circumstances to yours and it seemed to provide help with almost zero SEs. As others suggested, perhaps more discussion with MO and perhaps RO might be good.

FLRichardson profile image
FLRichardson

Radiation to the prostate bed.

Bobhascancer profile image
Bobhascancer

Are you still near LL? If so, try to get in work Dr. John Shin. He is my husband's oncologist and I cannot say enough good things about him. He is on the cutting edge of treatment for PCa. His is competent and his bedside manner is first rate.

DonM253 profile image
DonM253 in reply toBobhascancer

Thank you. I live in the Seattle area and go to Fred Hutch Cancer Institute

DonM253 profile image
DonM253

thank you. I asked bit since I already had radiation they told me twice would be to toxic.

Miccoman profile image
Miccoman

Check with your MO, but Lupron is probably for life, unless you have an orchiectomy to get rid of the source of testosterone. I did and I am so happy to be off Lupron, much better QOL. Don't know about Orgovyx SEs.

Certainly I would encourage Provenge immunotherapy -- it won't change your PSA but, in my experience (based on advice of research MO @ Moffitt Cancer center in Tampa in 2014), my QOL is quite good.

I had a several year run on Xtandi + Lupron so I'm surprised you did them sequentially. There are many treatments in the pipeline so best of luck!

DonM253 profile image
DonM253 in reply toMiccoman

Thank you for this info. I have a meeting with my MO early December.

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

Lupron + Nubeqa. Ask your doc....

Good Luck, Good Health and Good Humor.

j-o-h-n

garyg0616 profile image
garyg0616

Don I have had a similar cancer diagnosis but I am older than you. I am currently 86. I was diagnosed in 2007 by my Dallas urologist in 2007 with a rising PSA. I went to MDA in Houston for proton therapy (Dr. Andrew Lee). I went non-detectable for three years then my PSA rose to 8. I immediately returned to MDA for a salvage PT. MDA immediately placed me on Lupron and my PSA returned to non-detectable. That lasted until 2008 when my PSA started up very slowly. My Dallas urologist immediately placed me on Erleada. It had just become available. My PSA dropped to undetectable (less than .04) and has remained so ever since. Elegard and Erleada have kept my PSA un-detectable ever since. These two drugs have messed up my muscles and caused brain fog but have probably extended my life.

If you have any questions on my journey, please contact me. I wish you a favorable journey too.

GaryG

Tall_Allen profile image
Tall_Allen

You may benefit from a combination like this:

prostatecancer.news/2022/10...

Not what you're looking for?

You may also like...

Is there any value to continue lupron when castrate resistant

While on Xtandi monotherapy after some 12 months PSA began to rise. Pet Ct and MRI showed multiple...
Sxrxrnr1 profile image

Casodex after failing Xtandi and Lupron

G9 cancer, diagnosis 2005 with PSA 5.5 then. No treatment of any type,,no RP, RT, ADT for next...
Sxrxrnr1 profile image

Next steps after Xtandi and Zytiga

I was diagnosed with mPC in May of 2016 at 59 years old. I’ve had Docetaxel, Lupron, Xtandi,...
tomtom9148 profile image

Why has my PSA declined dramatically since Xtandi failed?

Diagnosed in 2006 with prostate cancer which had spread beyond my prostate. Recently, it became...
BillDoc profile image

Docetaxel-Depression

Has anyone experienced depression after starting Chemotherapy? I’ve been a fairly upbeat person...
NDJIM profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.