RT + 3 years ADT + 2 years Zytiga initial treatment?
Is anyone here being treated for non-metastatic disease with 3 years ADT + 2 years abiraterone (e.g. Zytiga) as a first Hormone treatment?
I'd be interested in hearing your experiences or what was communicated by your oncologists.
I as wondering because the European guidelines on PCa suggest this as a treatment.
"Offer IMRT/VMAT plus IGRT to the prostate in combination with long-term ADT and two years of abiraterone to cN0M0 patients with ≥ 2 high-risk factors (cT3-4, Gleason ≥ 8 or PSA ≥ 40 ng/mL)".
I was diagnosed with T3b GS 4+4, intra-ductal cribriform, cN0M0, PET PSMA negative, PSA 10.3 and have been treated with EBRT (whole pelvic + prostate/SV boost completed 24 July 2024) and Orgovyx.
So I was wondering if this has made it into clinical practice in other places?
I asked my RO (who knew about the trial results) about this but he thinks the benefits were not enough to justify the side effects. I should have been asked to decide ☹️, more likely it is not part of their standard of care yet.
Interestingly none of the hospitals that I got opinions from (of the four I consulted 😉) suggested this, but at one hospital the RO was one of the authors of those guidelines.
Any other thoughts about it that may be relevant (please don't hesitate about opinions - I'm capable of making up my own mind and will check everything).
You can always direct message me as well.
These are my Chatgpt discussions this morning and again I will check it carefully, (Chatgpt is often wrong or misleading).
https://chatgpt.com/share/66efd872-9b34-8013-b283-e7efc24ad238
p.s. The European guidelines are meant for Doctors but are very useful for patients as well with a bit of effort.
There are two versions, the full version and a pocket version (with just recommendations). I could not find a publicly accessible US equivalent but if anyone knows one I would be interested.
https://uroweb.org/guidelines/prostate-cancer
pocket: https://d56bochluxqnz.cloudfront.net/documents/pocket-guidelines/EAU-EANM-ESTRO-ESUR-ISUP-SIOG-Pocket-on-Prostate-Cancer-2024_2024-04-16-125527_rzmb.pdf
"Pocket" Version Page 102 (recommendation)
"Pocket" Version Page 112 (decision tree)
An article based on the Stampede trial
https://www.nejm.org/doi/full/10.1056/NEJMoa1702900
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Here in the United States the NCCN sets the guidelines for how long ADT should be used after radiation. For an Gleason eight they recommend 18 months Gleason nine or 10 they recommend 24 months.
Your treatment does seem to exceed US guidelines, but they are trying to prevent the cancer from coming back, continuing the treatment for as long as you are going to have it gives you the best chance.
With intraductal and cribriform you really are high-risk. Those two things really decrease longevity. You may actually end up being on the drugs longer than they are now recommending. You just have to wait and see what happens.
I’ve been on ADT for seven years, my BRCA2 genetic problem has the PSA pop back up the minute I reduce anything I’m taking. I was on Lupron and four Zytiga every day for 2.5 years. Brain fog was a pain so I tried to reduce my Zytiga to three pills. In 18 days, my PSA went from .2 to 1. We just have to live with what our bodies give us the best results. I am now on Darolutamide and have been undetectable for 10 months. Studies have shown that Zytiga is the drug to start with, and when it fails, move on to the ludamides. Something to keep in mind for the future.
Thanks @jeffmarc
I'm actually not on that treatment (3 years ADT + 2 Abiraterone) but I am considering it.
I saw the NCCN patient guidelines, https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459, but the professional guidelines are password protected, would anyone be able to provide me with a copy?
In fact, I just needed to register. I have the NCCN guidelines. Thanks for the hint.
Relevant section attached.
I don’t have the guidelines to give you. I participate in an advanced prostate cancer user group weekly and some of the participants are doctors and have access. They have told the group some of the guidelines. ‘
You really need to get moving on ADT. People with the advanced case you have can get more metastasis soon. ADT will stop your cancer from growing and spreading and can reduce the size of metastasis, while you consider options.
I am on ADT (Orgovyx) and have been before the start of RT. I was considering adding Abi.
Attached are the NCCN Guidelines Prostate Cancer for medical professionals, Version 4.2024
Professional practice guidelines are available for download on the National Comprehensive Cancer Network's website, along with patient versions and resources at https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459)
NCCN Clinical Practice Guidelines In Oncology - Prostate Cancer (NCCN-Clinical-Practice-Guidelines-In-Oncology-Prostate-Cancer.pdf)
Sorry I didn’t notice in your full explanation that you were on Orgovyx now.
While you can just continue Orgovyx and wait until you become castrate resistant (PSA rises, even though on Orgovyx) with the advance case you have you want to consider double therapy with Zytiga. You need to listen to the doctors and see what they have to say. You are at high risk and they want to try to give you the longest life possible with this disease. They might even recommend Triplett therapy with chemo, but you’ll probably get more than one opinion about that. With your PSMA PET scan being clear, they probably don’t want to do triplet therapy, you need to get that scan every few months, if you can, just to make sure you don’t have any metastasis showing up.
Not sure how long you have been on Orgovyx. Your PSA should drop to below one, even .1 but with EBRT it can take years to drop real low. In some case, it does drop low quickly, results are mixed. As long as you don’t have three rises in a row in your PSA things are usually working OK.
@colleenyoung After uploading this I wonder if I should have. Please delete it if it is not OK.
I just registered as a patient on the NCCN site and downloaded it which anyone can do, so it is sort of public but I may have violated copyright here,
On orgovyx and abi Went to mayo in search of triplet therapy. Was told that was serious overreaction. Does resistance failure have to occur before triplet therapy is authorized?
@akiwi, thanks for bringing this to my attention. The purpose, intended audience (physicians) and copyright are clearly marked on the publicly available download. It's okay to post.
I also added an "editor's note" about the attachment outlining that they are NCCN Guidelines Prostate Cancer for medical professionals, Version 4.2024. And that professional practice guidelines are available for download on the National Comprehensive Cancer Network's website, along with patient versions and resources at https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459) (as you had mentioned in an earlier comment.)
I think you will find that you have to have multiple metastasis as well as being castrate resistant before they really push for triplets therapy. You don’t want chemo until it’s appropriate.
I’ve had PC for 14 years but only one metastasis which was zapped. Chemo is not appropriate in my case and it doesn’t sound like it is in yours. Mayo doctors want to do what is best for you. Chemo is hard on your body and mind, best to put it off until it is most effective, which is when you have multiple metastasis that can be treated all at once