4 years ago diagnosed with metastatic prostate cancer.
4 years of just Lupron which has now started to fail because 2 months ago PSA .19 and now 3.1. Waiting on scans and appointment with MO. Is Zytiga next? How long will that keep the cancer at bay? What’s after Zytiga?
Can anyone with metastatic disease and Lupron failure tell me their story with treatments?
Thanks!
With metastases and castration-resistance, the approved therapies are docetaxel, Zytiga or Xtandi. Provenge may also be beneficial.
Thank you! Did Provenge summer 2020 at MD Anderson. Typically how long is Zytiga affective?
Depends. Some guys years (I'm going into my 4th year but haven't taken it continuously).
Why is Lupron still used when drugs like Xtandi and Zytiga block T from all sources?
The concern is that the blockage is incomplete or that much larger doses may be necessary without Lupron. And, the cancer always becomes resistant to Zytiga and Xtandi, but Lupron always works. There are trials of the monotherapies.
Thanks
I started with early chemo and Lupron (PSA at diagnosis was 227.) Undetectable for about a year. When PSA started to slowly rise, added Zytiga to Lupron. Worked like a champ! PSA back to undetectable in a month.
Best,
James
Thanks! Sending you well wishes for continued success.
What you probably have now is an increase in either the sensitivity of the androgen receptors (ARs) or an increase in the number of them or both. End result is similar.
If this is the case, your doctor might want to decrease testosterone (T) even more than it is now. They might want to add Zytiga to Lupron. Or perhaps just go to chemo now. Perhaps radiation.
Lupron acts by eventually reducing LH and FSH to zero. So T isn't released. But the T isn't actually zero. Just close. Some T is made by the cancer cells. Some T is made by the adrenals. This is where Zytiga comes into play. It is a cyp17 inhibitor. Cyp17 is in the path to create T. So inhibiting it means that your T goes lower. Lupron mostly just acts on T made from the testes. Zytiga acts on all sources (including testes).
Another option is Xtandi (or even bicalutamide but it isn't quite as effective as Xtandi). Xtandi will block the ARs from receiving T.
The bottom line is that your MO should direct your therapies for what might work in your particular case.
If Zytiga inhibits T from all sources, why is Lupron even necessary?
Good catch. It might not be needed unless you needed. I don't think that the FDA has done any trials to make it a SOC monotherapy for ADT.
Thanks
Found this article: Is ADT Necessary When You Take Abiraterone Acetate (Zytiga)? — Cancer ABCs
cancerabcs.org/advanced-pro...
I think I'll discuss with my MO and if she agrees I'll try this out (there would be a definite advantage for my cyclical ADT and the less drugs the better).
And the SPARE-trial RCT data: 25. Abiraterone acetate plus prednisone (AA+P) without continuing LHRH-therapy in patients with metastatic chemotherapy: Naive castrations-resistant prostate cancer—Results from the SPARE-trial (NCT02077634). | Journal of Clinical Oncology
ascopubs.org/doi/10.1200/JC...
Is the duration in days? And did the arm without ADT go longer without progression? Wasn't certain I read correctly. Thanks
Correct and correct.
It was in days. About a year.
The Zytiga only arm went longer without progression and appeared to have better results. But the study was underpowered for progression analysis. It doesn't make a lot of sense to me that adding ADT would make the results worse. Might be real though and involve body composition changes or perhaps something else?
Yes, very curious. But very small study.
Right now I'm stable on Lupron only, so will keep my ears open for more info on this.
Zytiga inhibits cyp17 so, if it is strong enough, it should reduce T more effectively than Lupron. To me the important part is to test it thoroughly and then monitor to make sure it is continuing to work.
Yes. I'd have to pay for Zytiga (generic AA), but Lupron is covered fully by Medicare.
Oh. In that case, I'd continue the Lupron. My MO authorized Zytiga for me so with the manufacturer copy assistance it is $10 a month.janssencarepath.com/patient...
Thanks. I doubt my MO would try it on first suggestion, but on third, fourth, fifth? Possibly. I've become the devil he knows, and he seems to be starting to listen. Now all I have to do is stay alive!
When I first started seeing my MO I think she believed that I was a crackpot (she recently gave me a copy of her therapy notes - I'm glad she didn't give them to me earlier).
But the lab results started rolling in and pretty much every prediction that I made about PSA, testosterone, and cancer growth (scans), was spot on (I think that there was some luck involved too - I seem to be a hyper-responder to high testosterone therapies but I did not know that going into this). After about a year of lab tests, she let me do my thing. After another year she would listen and comment on my proposed therapies. This year she not only comments, she asks questions and seems intent on learning why I am doing the things I do. And as time has gone on she talks openly about non-SOC things that might help. I look forward to talking to her and learning new things. I love that I have met a smart, humble doctor who is willing to admit that not everything is known and that I do not need to enroll in a clinical trial in order to have someone "oversee" something that I can easily do myself.
Sounds like a great experience. Hopefully more docs will develop that attitude. One thing I'd bet on: women, as a group, have their docs listening more than us sheepish males do.
I have the same theory. Men have the stupid need to be right syndrome. Women are much better at admitting when they are wrong. My wife is training me.
The median overall survival for mCRPC no treated with chemo, and treated with abiraterone and prednisone seems to be around 35 months.
I have been on Lupron/Zytiga for 6 years in June. It has just started to begin to fail. I am using something off book that has stopped this failure, not sure how long it will last thou.
If you scans don't show anything zytiga would be good next move. You did well with Lupron so you should do well with zytiga.
Last year Lupron and Zytiga with 5mg of prednisone were not doing the trick anymore, after 15 months. PSA doubling time 3 months. I was told Docetaxel would be next. My MO said he was sorry about the news. I started writing emails and making phone calls, Yale, Dana Farber, etc. Switched to Dexamathasone, no change, PSA continued to march on. After a couple of personal visits to Hospitals was contacted by Dana Farber and accepted into the LuPSMA617 trial. After two infusions, PSA has gone from 8.1 to 0.48. I'm 68 years old and my dancing partner has been with me for 15 years. I feel incredibly fortunate for each day. No one explained to me the path to take. This is a unique journey for us all.
Don't know. I've been on Lupron only since Nov. 2018. Still stable at 0.7. You can bet I'll be reading replies to your post.
Lupron now for 2 years with Erleada and T at 0.5 and PSA at 0.02. I'm so invested in replies to your post. I hope everything goes well with whatever new treatment you start.
I was put on Lupron + Bicalutamide (Casodex) in 2014, when I was diagnosed with mPC. At that time I was told I'd be on Lupron for the rest of my life.
After a year my PSA started rising again so I was now mcrPC and I switched to Xtandi + Lupron. I was given a 5, 10 at the outside, year life expectancy. Two years ago they revised that to probably an additional 10 years from that date.
Faced with the longer life and the fact that Lupron was driving me crazy, last year I had the boys removed and now do not have to worry about costs much less the side effects.
Last spring my PSA rose over 2.0 and I did Provenge. PSA steadied for a couple of months and is again on the rise -- I went back on Xtandi and that helped for a couple more months but then stopped working. I start chemo (docetaxel) next week.
Xtandi 👍For me personally saved the day. As well my life. ( For now)Sticker shock but the the makers of Xtandi help with costs.
I'm holding Xtandi back for when/if BAT fails. I hope it is a wonder drug for me.
I have high hopes for the BAT/Xtandi/BAT/Xtandi... RCT.
Hi Everyone!
Amazingly scans were stable so MO is keeping me on just the Lupron for now with a blood test in two months to see what’s going on with the PSA at that point. Told me that losing belly fat should help my PSA go back down…I’m a little leary.
Thanks to everyone for the replies…it helped me get through the past couple days of worry.
I’ll be in touch!
Advice please..Zytiga failed 
Lupron 
Lupron 
Lupron or not that is the question
What Follows Lupron and Zytiga?
