Hello my brothers, I joined this group last year after my devastating Dx. I have my details on bio page. Asking for advice on what I should do next? I finished RT two weeks ago and have been on ADT , lupron + xtandi since Dx. My last PSA was taken after my second week of radiation which came back 0.06ng and testosterone 11. In July of 2020 after being diagnosed I went to Johns hopkins for second opinion and met with Dr Antonorakis. He sent his recommendations to my urologist, which was " I do not recommend upfront chemotherapy in this patient, but I have advised patient to initiate adt immediately with the addition of abiateron or enzalutamide and radiation to the primary and lymph + iliac bone. So I've done the recommended and now just worrying about what I should do next? Thank you all for advice
What next?: Hello my brothers, I... - Advanced Prostate...
What next?
Abiratorone would be a good choice. If needed you could move on to xtandi.
Thank you
Is Xtandi failing? Why do you want to change therapies?
Was just wondering is using upfront xtandi is a bad idea in newly diagnosed oligometastatic instead something else
Why do you wonder a counter-factual thing like that? I don't understand.
I thought Enzalutamide was for castrate resistance PC that's all. So am I making a mistake by taking it now instead of later? And when it stops working then what?
No, it is approved for metastatic hormone-sensitive PCa as well.
ascopubs.org/doi/full/10.12...
When that fails, there are several choices, including chemo, a BAT trial( at Johns Hopkins), Zytiga, Xofigo, Provenge, and many tailored or experimental options. By then, there will be many more options.
It is always a bad idea to save therapies for later - they don't work as well and have more side effects later. You get more time on each option if you use it earlier.
BTW, Antonarakis is one of the best. I would never try to second guess him, but certainly ask him questions.
Thank you much appreciated ! I went to Antonarakis for a second opinion. My hometown radiologist didn't see any bone mets on scan and also hometown pathology said I was Gleason 10. So my first meeting with Dr Antonarakis ,he saw metastatic bone disease and downgraded my disease to a Gleason 9. I live a few hours away from Johns Hopkins and have met with Dr Antonarakis a few times and like and respect him very much. He has been sending his protocol to my urologist and oncologist at home . One more thing I would like to ask you .I did the foundation gene thing and there were no treatments that showed any benefit for me, but it said I had a homozygous deletion of MAP2K4. Have you ever seen this? Sorry to talk you to death
MAP2K is one of many genomic deletions/mutations that are useless to know about at the present time. Most mutations are useless to know about.
Maybe one day! Thanks Tall Allen
You should do nothing. Don't make the mistake of burning through treatment options.
Thank you
I don't think I'm failing xtandi, but I am just trying to be prepared and know all my options, I worry constantly
Anxiety itself is a problem. There is no such thing as "being prepared." You will have time to deal with it when you have to, with whatever tools are available then, which you can't anticipate. I saw a psychotherapist and learned how to practice mindfulness, which still keeps me focussed on the present moment.
Hi marcev,Since you have elavated us blokes here to be your brothers, then I'll go a step further.....
Good evening Comrade 
I don't want to have to type out another screen full of words about my past treatments since diagnosis in 2009. So I have a link you can go to and look at what treatment I have had from 2009to about now......
turneraudio.com.au/Patrick-...
Usually what happens when an RP or initial RT + ADT fails to work to kill your Pca, you then restart ADT and stay on that for rest of life. Then after ADT alone fails to keep Psa low, docs start adding drugs such as Cosadex, then Zytiga, and then when these fail to keep Psa low they might give more RT to PG, salvation IMRT, and when that all fails and Psa rises you get chemo and that's likely to fail and so you qualify to get Lu177, which means you need to go to Germany, India, Australia, South Africa, etc because US FDA won't yet approve Lu177.
I got some time with Lu177 and apparently have no visceral soft tissue mets but bones now have Pca mutant cells that make far more Psa than the old original mets from PG made.
So I began Ra223 with Psa 180, and 13 days later, Psa was 250. In the month before Ra223 dose, Psa increased 2.7 times in 1 month. I live in Australia and could get Lu177 and Ra22 from Theranostics Australia who have a website.
I now have no idea if Radium223 will kill more Pca cells than the new Pca cells which are growing. It is too early to tell yet.
I have no Pca symptoms, and have been cycling 200km+ per week since 2007. I have no additional "co-morbidities" such as failing heart, or diabetes etc. I can work around house and in my craft shed and I don't seem to need any support from a wife or anyone else.
Your Psa seems to be low at 0.06 now but you have Testosterone 11, and you should keep a close eye on both, and record the time it takes for Psa to double, and if Psa is 0.12 then 0.24 over next two months, then you do have a problem. Our units for Testosterone here might be different to yours. I had a pause of ADT after first two years and T went from less than 0.5 when on ADT up to 20 in a heathy range between 8 and 38 units.
The very small amount of T that is measured when ADT works is due to what the adrenal glands make. ADT does not stop adrenal gland working, but use of Xtandi or Zytiga will block / stop adrenal gland making T. So your T should difficult to measure.
As months or years roll by, the ADT will fail on its own, and the Zytiga and Cosadex and Xtandi will also fail, so Pca is able to grow, so usual next thing is Chemo, which often fails.
But by the time you get to chemo, your Psa might have risen to say 5, and its a good idea to have PsMa scan which is a good one to have to see where that Psa is coming from, It could be from PG or site of RP or from mets.
You may or may not be able to have Lu177 if your Pca does not generate PsMa, another prostate specific chemical at met sites. An FDG PET might be needed if PsMa Ga68 scan does show much Pca with high PsMa expression. Lu177 would then be useless.
Your then have only chemo options or use of PARP inhibitors if DNA analysis shows you might get a time benefit.
Surviving after diagnosis is all about gaining time.
Maybe that's enough info now for awhile, and how your Pca reacts to the same treatment I have had cannot be predicted. My Pca is not the same as yours or anyone else's.
Good luck with how you fare,
Patrick Turner.
Very helpful Patrick, thanks for being kind enough to give me this information
This is an incredible reply! So much info, and a great summary of what a lot of guys are dealing with. There are some very well read people here.
I agree, I have learned a lot from all you guys ! I stay up real late and binge read all you're post
You need to give the treatment(s) TIME to see the results.
You are second guessing without sufficient knowledge to propose alternatives, IMO.
I'm NOT being critical - just pointing to the obvious.
Give it time - you will be monitored and adjustments can / will be made if needed.
ONE thing we probably don't realize is that for MOST PCa patients, the disease is not a run away train and there is sufficient time to test for results and change paths as needed.
Try to 'de-stress'- yourself - there's still enough runway in front of you.
I had a DX as follows: 'advanced aggressive PCa - high risk etc - that was nearly 4 years ago and I'm doing pretty good - hope to get another 5 or more - depends but I'm reasonably optimistic.
Wishing you well on your journey ....
I like your artisans sense of humor Marcev. And I think I understand your concern. You are metastatic (oligometastatic to bones, meaning just very few sites) and are hormone sensitive, mHSPC. Very crappy hand to be dealt. Now the strategy must be to control the growth and progression of the cancer to castrate resistance. The Catch-22 of PC is that the very treatments that stop the growth, ADT And advanced AR drugs like your Xanti create the conditions for selecting mutations that are CR. So what to do? Use the more intense regimens (adding Xanti or Zytiga to the ADT) or saving them for later? The clinical trials have shown that combining them while still HS delays CR status better and improves overall survival. So Dr. Antonorakis’ advice is sound.
A round of chemo would be saved for a time in the (distant!) future when it was mo longer working.
What else? Well I think it is a good idea to pursue Provenge (immune) treatment now that you are already metastatic. Experience shows it can add about a year to OS.
If you had the Will and the means to pursue Lutetium-PSMA abroad as Patrick suggested then that is reasonable, though hopefully it will be approved in the USA in another year or two. It seems to work better earlier with lower burden of disease. But you will probably not have your mets growing much while still HS. So you could reasonably wait in that respect. The problem is that Lu treatment is not so good by itself for bone mets in many cases. So the more advanced centers are moving to combined treatment with Actinium225 isotope which will not be available here in the near future so Germany, Australia, India and England are most often the destinations for these treatments.
And please don’t go off the deep end about the diet and supplements opinions here. Be measured and selective and do your own research.
Very helpful MateoBeach! I will see if I can get some of that Provenge! Thanks for you're response
Take a page out of MarceL Marceau's....life and stay quiet and LIVE..... Life is too too short to be anxious all the time..... Laugh too...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/15/2021 11:34 PM DST
Not what you're looking for?
You may also like...
Casodex failure? What's next?
Chemo failure. What next?
Failing Lupron? What's next?
Moving on up,whats next.
What opitions are next for me
Off Xtandi, what next?
If Pluvicto fails…what next?
Enzalutamide resistance. What's next?
After Firmagon, what next?
What next after chemo?
