Hi guys. Hoping I can get some info .. last Jan, 2 years after radiation I had a psa spike that after many scans showed an 11 mm lesion of PC in my lung . Started Lupron/zytiga and very quickly psa went from a high of 17.5 to 2.6 in a week to .1 in a month and now has been under.1 for 5 months . I guess it’s undetectable .. Doc ordered new scan on lung and lesion is completely gone!!! Ok “best results possible” I cheered .
As happy as I am I asked doc if I ever could get off meds or get less treatment( honestly just want a little T back). He said sorry no . You need to stay on forever and hope it stays like this ... I felt happy but again defeated .., he said it could come right back we can’t chance it . Although that makes sense, has any of your docs done intermittent ADT ?? Do I ever qualify ?? I’m blessed with my results please don’t think I don’t know that ..
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Ironically, it is the men with few detectable mets who seem to live longer with continuous rather than intermittent ADT. The QOL ratings are about the same over time, although iADT wins in the short term.
Where can I find more information on intermittent versus continuous ADT? I have been on Luperon and Zytiga for one year, and now PSA is undetectable. Side effects are wrecking QOL. My doc does not look with favor on intermittent, but I am considering it anyway if I can learn more about it, particularly QOL changes.
Hi Echoll- My husband took a break from Trelstar/Zytiga/Prednisone/Xgiva after a year due to QOL issues (basically he spent a year hardly able to muster the energy to get off the couch). We did this with the knowledge that the consequences are unknown and the safest course is to stay on them continuously. His PSA was <0.006 since starting Zytiga. His last dose of Zytiga and Trelstar injection was May of 2018. The Trelstar started to wear off in Sep, 2018 when Testosterone became detectable. By Oct, 2018Testosterone was around 260 and it went up from there (it is now around 650). To be honest, coming off of the medications was just as brutal as being on them. We think this was mainly due to withdrawal from the prednisone. Even though he tapered off he experienced edema, joint and muscle pain and fatigue for months. Other than the cancer, my husband is healthy. He was a 5mile jogger with good blood sugar, body weight, cholesterol and blood pressure before the diagnosis. Anyhow, here we are, a year off medications and PSA has just become detectable at 0.051 on an ultrasensitive PSA test. QOL is good. We likely have a few months before we have to take some sort of action. Our oncologist is advising a PSA of 1 as the time to restart ADT. My husband also uses supplements and off label meds and vegan diet with lots of vegetable juicing. I am not endorsing our decision for others, but thought it might be useful for you as you make yours.
About 6 months until the edema, joint pain and fatigue completely resolved. I suspect others may have an easier time of it.
I am in the same boat . I’ve been clear of all visible signs over 4 years now . Still afraid and so are my docs to stop the adt that I’m on . Welcome to the club. Others can tell you about adt vacations . I believe you should be undetectable for longer to make that decision . If ever . Sounds depressing , I know . As you said we must be grateful to be undetectable .
Your PSA is truly undetectable when you get a < (less than) in front of the result meaning it’s below the limits of the test being used. I’ve been on ADT for 5 1/2 years now, my PSA undetectable for nearly 5 years. I’ve been given the option of IADT by a couple of docs however the ones I trust the most, those specializing in PCA recommended leaving things alone since it is working so well given my starting point.
I feel that perhaps I’ve beaten the cancer into dormancy through early aggressive treatment and fear waking the beast. Life on ADT is the new normal, I’ve learned to adjust, and it sure beats the alternative.
Yes I am<.1. I wish all my PC friends the best and appreciate the opinions
I think at least half the guys in this forum are in the same boat. Drop the ADT at our peril. But I see some have stopped the Lupron type of treatment and giving estrogen patches a go, with some good results. This is going to be my next Plan B (at least for a while), as the side effects should be less and I can perhaps get back some muscle. It does not bring back the heady days of manhood though . I already have boobs so I can live with bigger ones! Can the guys who are doing this please give us more feedback?
David, I went on the patches in 2015 and they worked great for 4+ years until side issues (primary huge memory loss) made me switch back to Lupron. Good luck if you go that route.
Thanks for that info - is is very encouraging. Perhaps the way to do this is to go onto patches for a while and recover from the Lupron damage, and then get back onto Lupron with a "fresh re-start" and some renewed muscles. Stopping Lupron all together without anything to fill the gap does not sound like a good idea. Anybody tried such an alternating protocol?
Hi. Our situations are somewhat parallel. We’re both doing well but like you, my doc at MD Anderson says it’ll be intermittent Lupron until it quits working or I hit 90 because it will come back. Of course, we can hope a new immunotherapy will come along in the meantime. Hang in there!
Yes, my doc had me take an “ADT holiday” for a bit over a year. During that time the PSA started to rise and the velocity increased rapidly. He was going to wait until the PSA hit 4.0 to restart ADT but I had an MRI for an unrelated back issue that reveals lymph node meta at PSA= about 2.
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