About to start ADT for Gleason 9 (5+4) for locally advanced prostate cancer, followed by IMRT in 1-2 months. (Plan to ask about HDR boost). PSMA Pet negative for spread but MO had another radiologist look at initial prostate MRI suggests extracapsular extension along neurovascular bundle with possible spread to right seminal vessel.
Reading some discouraging information about ADT and Gleason 9. How will can I know if it is working and not resistant? Appreciate advice.
I was diagnosed with Gleason 9 plus a lot of Mets. My understanding is that everybody gets ADT. As soon as possible. And as for resistance, which as far as I know two years later I don't have yet, it takes a while to develop. Resistance is only the consequence of hormone or other drug therapy. I'm just one data point but my sense is that you don't need to worry about resistance now. Instead your focus now is on preventing escape of the cancer from the prostate "to distant sites". (For me it was too late.) BTW it seems that not everybody has a medical oncologist right away on diagnosis - so good work for ensuring that trade is in place.
Thank you for the quick reply. Have a lot to learn. How often are you monitored and how? PSA? MRI? Pet? My MRI is now 3 months old with how long it has taken to get to urologist, biopsy, pet, oncologists, etc.
Best wishes for health in the new year.
Hope: In answer to your question about cycles, I am on Firmagon/Degarelix ADT.
I have written about ADT separately on this Forum - my ADT is an injection every 28 days - and because my situation was an emergency with an immediate threat to my spinal cord, Degarelix ADT, along with dexamethasone, was prescribed because Degarelix works very fast and does not cause a testosterone flare.
Also this drug (Degarelix/Firmagon) is GnRH "antagonist", versus Lupron/Eligard which is a GnRH "agonist". I was strongly encouraged courage to move off Degarelix "for the convenience" of the 90-day spacing of Lupron injections. The two ADT meds are not the same and I have stayed with the original drug with the better CVD profile.
Anyway the 28-day injection regime controled my PSA monitoring schedule; was getting a blood panel along with the injection.
So, until recently, I was just seeing the doctor every 4 weeks. And I have an annual CT, CT SPECT and bone density scan. I had MRIs at the beginning in a couple since just for incidental concerns. Never yet PET or PSMA. Also never saw a urologist until recently - almost a year and a half after diagnosis.
At the very beginning of my diagnosis my family physician raised holy hell with the oncology department of the local hospital. Because I was at serious risk of spinal cord damage. Fortunately this was completely avoided. My situation was an emergency. It seems to me that yours is a different kind of urgency.
Having just reread your original note above I'm not sure my comments above are so relevant for you.
You do not mention that you are on ADT yet. You seem to have PCa which has been caught at an early stage. Your PSA is slowly climbing and it's not even 7 yet! My PSA on diagnosis was 1700+ (not a typo). But I don't see anyone taking action in your case. So I have shared with you my situation which is not really a guide for you. I have never had any radiation or surgery! I have no incontinence or other consequences that so many people with prostate cancer have! Because it was too late! I never had to think about the kinds of questions that you are facing now.
In my case with a Stage 4 PCa diagnosis the life expectancy is "30% get to 5 years"! In your case if you manage to forestall metastasis then you have a completely different situation - living with cancer rather than dying from it.
Thank you John, wish you the best outcomes for treatment. I just started ADT (eligard) this week as they wanted Cardiology to weigh in. IMRT in two months.
Hello John,
Me too. I have Gleason 9 totally over half of my prostate and a single zone of 6 in the other. I have my first consultation for treatment this morning. My Urologist has selected CyberKnife and ADT treatment. I am concerned about the cognitive decline and fatigue side effect. I am an author and do not want to lost my creative edge. Let's stay in touch. Send a message to my profile and I will return my email. Good luck.
Yes, of course it works. Ignore retrospective studies.
Thank you for the reassurance and expertise.
They will check if your PSA and Testosterone go down. If they do then it means that ADT works. They should do blood tests every 2 weeks for the first 2-3 months of ADT.
Thank you for sharing those guidelines. Will help make sure the best things get done.
I am G9, and had been on Lupron alone for 8 years, it worked until it didn't. (8 years) But it most certainly kept my PSA very low, about 0.18.
I'm now on Orgovyx(ADT) and Xtandi (ARI) for the last two years.
PSA is now undetectable.
So, yes it absolutely works!
Consider requesting a PSMA PET/CT, since this test may change the treatment plan in these situations.
Yes absolutely...until it doesn't. Currently 24 months in and still undetectable. see my profile for details.
Great news! Thank you
Sure does... and you'll eventually be able to change your userID to 2039823. But as you know they go quickly....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 01/03/2024 7:56 PM EST
Advanced prostate cancer-gleason 9 with lupron
Gleason 9 - spread to lymph nodes, update on treatment plan.
Low PSA (Less than 2 ng/ml) but high Gleason (9) cancer which spread to liver
Gleason 9 with lymphnodes 
Prostate cancer gleason 9; 88 years of age
