I had RP (2001) with Gleason 3/4, clean margins. Dx'd with biochemical recurrence in 2015 leading to 45 sessions of salvage radiation (MRI was normal) and PSA was 0.40 at start of salvage tx. Nadir of 0.11 leading to peak of 0.63 with 5-6 month DT when I entered a clinical study (phase 3) ending up on the "control" arm. Receiving monthly ADT "depot" injections since October 2018. PSA declined sharply (0.10 after one month, 0.01 last month). I will be getting my 8th injection next week. Scans before starting were clear (bone, CTs chest, abd, pelvis) except a possible mets in a pelvic wall lymph node. So I see myself as low volume, low risk, stage 4? without definite site (assumed, not in the pelvic bed due to radiation, and of course no prostate).
My question is should I drop out of the study? I have consulted 2 MOs and a Urologist from a large practice who specializes in Ca. One stated their approach in my case was 9 months of ADT, then holiday; another stated 6 months tx and if working a holiday, and the third said they would stop after a good response, and await an upward PSA value to signal end of the holiday. Bottom line no one recommended 12 months of ADT as the study requires. I appreciate that the study was designed several years ago, and SOC has changed. So while I hate to leave the study (always a good soldier), yet continuing tx seems to be risking harm (remote) for no benefit as the study will be comparing a control that no longer is SOC. My current QOL suffers with frequent hot flashes, difficulty sleeping, significant fatigue though I do continue shorter runs and weight lifting, fuzzy brain. My sense is to start that holiday, but can't find a good consensus on when. Should I leave the study?
I do really appreciate all the information you all share on this site.
I'm not a doctor, but I am also not a fan of these ADT "holidays." Mine "resulted" in metastasis, chemo, and a second round of radiation.
You may be on ADT for life. Please ask your doctor about venlafaxine. This anti-depressant stopped 90% of the hot flashes and sweats for me. You don't have to suffer with those side effects.
Thanks. I have been reluctant to use venlafaxine as the side effects (fatigue/libido) are kind of the stuff I'm fighting on ADT. I can still run/hike/climb and get erections/organisms (taking 20mg daily of sildenafil); so trying to minimize anything to upset the apple cart. Also my interest in holiday as I don't want to lose what I can still do (QOL).
I understand. Every man's situation is unique. The only side effect from the venlafaxine that I am aware of is an "attitude adjustment" that my wife views as favorable. I still swim laps 3-4 times a week. The rest is history; I am focused on traveling and helping people as best I can.
Blessings to you.
That is reassuring. More to think about, Thanks
Venlafaxine took my balance away, worsened my neuropothy, took my vision from 20/30 to 20/300 in 60 days, tripled my hot flashes, way more side effects than most people experience. One month after stopping I was mostly recovered. Doubled Megace , saw retinologist (all OK), eye sight improving, but after 6 mo. had to get new prescription as some changes permanent.
Wow, so sorry, I've had none of those side effects from venlafaxine!
Terrible !
I was on venlafaxine before I had cancer, and am not on it now. The problem I have with it is it's short half life, so if a dose is missed the withdrawal effects kick in fast. Much happier on bupropion but it hasn't been shown to reduce hot flashes.
Hello whitebird,
After having had your RP in 2001 you have managed your disease so well and still you don't seem to have any major problems up to now. So I congratulate you first. I think there is no hard and fast rule for setting ADT holidays - after 3, 6, or 12 months of continuous use. Best thing is to discuss with your MO taking into consideration the movement of your PSA and your QOL concerns. I used ADT continuously for 2 years immediately after RP and IMRT because I was GS 4+5 sataged T2c No Mx. Dxed in March 2015 and have been in stable remission since initial treatment.
You have said you are quite active and also get erections/orgasms if you take 20mg sildenafil. Did you undergo the "Nerve-sparing RP" in 2001 and what was your age then?
Sisira
I am with you on this respect .. results with the venlafaxine.. good news Keep flying.. your experience confirms my thinking already . Thanks