Good evening fellow warriors and members of this f’n club none of us signed up for. I started this journey 6/2012 with Gleason 9 (5+4) and a RP, Surgical pathology showed seminal vesicle invasion, 2 positive pelvic nodes and a good luck from my surgeon. Reoccurrence 2013 brought on pelvic EBRT and short course (6 months) of Lupron, shortened due to cardiovascular fall out. I don’t remember exact dates but reoccurrence happened about 2016 so I signed off on the cardio issues and back on iADT for about 3 years. My 1st ADT vacation lasted about a year and PSA went from .1-.2 then to .4 with around a 4 month doubling time so back on iADT. Next vacation 5/2024 and PSA held .1 until 12/24 then came .2. Next PSA was in 90 days and PSA was 1.5 so my PSMA scan was done and showed 3 small left supraclavicular nodes measuring .4,.4,.5 mm with 4.2 SUV and 8 more left axillary nodes (arm pit and pectoral nodes) from .5-.9 mm with 4.6 - 20 SUV. My doc slipped in one more blood draw the day of my PSMA and in just 14 days my PSA jumped to 2.2. My oncologist says that doubling velocity is not good and added the route and area of my metastasis is extremely rare for mPCa and that I’m now hormone resistant (testosterone only 42). I may have changed my outcome and longevity with iADT.
Any words of wisdom from my brothers are welcomed and appreciated.
In it to win it until I can’t,
Gary from Texas!
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Linebacker75
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If you have never taken zytiga (or any other second line hormonal drug, now there are 4) it may be the reason to do so, given your excellent response with adt it should control the disease for several years. I must say that having a gleason 5+4 despite everything you are a very lucky person. Talk to your oncologist about it.
My friend, you have been through it. I thought my (2) kypoplatsty procedures (cement into vertibrae) a side effect of successful SBRT radiation on my vertibrae - had made me a tough guy.
Have you hade any genetic counseling/consult? I ask because my BRCA2 gene mutaion has made my journey quite a bit tougher (no ADT vacations; overall cancer persistence).
ask for the following genetic testing. Unfortunately the tumors grow their own genes, the bastards. This is called somatic testing of the biopsy tissue. Another is a liquid biopsy to see what is circulating in your bloodstream. It will tell them what you’re dealing with. I would also suggest you register for the Promise trial. It’s free. It will tell you what inherited mutations you have like BRCA gene.
Also consider getting an opinion from a place that does research on prostate cancer . I think you mentioned Texas, they are most knowledgeable in dealing with this monster.
I did the Promise testing and it was so very thorough, even my oncologist was amazed at the results. It tested for all the same heredity genes, he was going to test with a blood sample, which was $3000 if our insurance or VA wouldn't cover. Saw this mentioned on here, contacted them and in less then a month had results !
The only good news is that you are now eligible for lots of drugs. There are second generation hormonals (Xtandi, Zytiga, Erleada and Nubeqa), chemo (docetaxel), immunotherapy (Provenge), as well as clinical trials.
I’ve been on Orgovyx for 10 months. My oncologist wants another ADT vacation. My side effects are more tolerable than when I was on Lupron. A few months ago you indicated the ADT vacations do not extend one’s life. Should I remind my oncologist?
But, why on earth would someone take a vacation from prostate cancer treatment when it might allow the darn cells to come back and start growing again?
Thanks for the responses and encouragement brothers. I had a biopsy of 8 axillary and sub pectoral nodes today at MD Anderson. I see my MO on April 15th for the results and unless the biopsy results change his decision I’m back on Lupron, 10 mg Prednisone and 1000 mg Zytiga then as well. Now I have some research to do so I can get up to speed on where I stand. I can’t complain since this journey started 13 yrs ago but do hate I lost some ground. Stay strong my brothers!!!
Hmmm....haven't there been some trials that seemed to conclude that iADT was not inferior to continuous ADT? So, maybe you shouldn't feel guilty that you agreed to the iADT?
I've been trying to remain positive about my current non-meastatic status after IMRT and now at my 12th month of ADT post RT. But all the negative comments here about Gleason 9 are a real downer..though I'm "just 4+5". Some folks said you were lucky...like me, I bet you don't consider yourself lucky? Having any cancer of any type is not good luck!!!
I wish you the best as you continue treatments!!!!!
Thanks for the input, maley2711, I’ve read where iADT VS ADT don’t really alter the patient’s lifespan but I’m more bummed out over the hormone resistance part which likely will speed up the failure of some treatments.
On another note try not to sweat that g-9 deal. I’m g-9 (5+4) since 6-2012, I still work, ride my scooter, race cars and occasional play softball and life is good. Don’t let that damn cancer control you! Do your part to stay healthy, live and love well and don’t look back!✌️
Hey, I realize it is all comparative....I lucked out and didn't get the diagnosis until age 73-74.....while you got punched much earlier I guess. I won't be doing the things you are still doing!!
I’m similarly situated, my PSA was doubling monthly. I’m NOT hormone resistant yet but likely in 1-2 years. I’ll looking into getting a second opinion from MD Anderson in Houston.
Hotrod asks why people would take a drug vacation? I was diagnosed in 2021 with GL 4+3 (not high) and PSA at 10 (ditto), but then found that I had metastases in skull, ribs, pelvis, pubic bone. I was on Abitaterone, prednisolone and quarterly jabs. By last April I was in a lot of side effect pain, tiredness, to the point that I needed morphine. My PSA was still unmeasurable though.
My QoL was nil so eventually, with my consultant's tacit agreement, I stopped them all (I also have a blood cancer, taking chemo capsules, which I still take!). Since then PSA still <0.01 and I do feel better. Still bone pain, but nothing like before.
I accept that the cancer will return and will see what needs to be done then, but so pleased that I did take a break. Everyone is different though so good luck and get best advice.
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Progressed to bones...advice welcome!
Stage 4 A Prostate cancer
ADT Vacation?
Stymied and worried
Monitoring disease during ADT/Zytega vacation. 
