Should I stay, or should I go - Advanced Prostate...

Advanced Prostate Cancer

17,702 members21,801 posts

Should I stay, or should I go

whitebird profile image
20 Replies

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.

20 Replies
tallguy2 profile image
tallguy2

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.

whitebird profile image
whitebird in reply to tallguy2

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).

tallguy2 profile image
tallguy2 in reply to whitebird

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.

whitebird profile image
whitebird in reply to tallguy2

That is reassuring. More to think about, Thanks

Shooter1 profile image
Shooter1 in reply to tallguy2

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.

tallguy2 profile image
tallguy2 in reply to Shooter1

Wow, so sorry, I've had none of those side effects from venlafaxine!

in reply to Shooter1

Terrible !

tom67inMA profile image
tom67inMA in reply to whitebird

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.

Sisira profile image
Sisira in reply to whitebird

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

in reply to tallguy2

I am with you on this respect .. results with the venlafaxine.. good news Keep flying.. your experience confirms my thinking already . Thanks

Tall_Allen profile image
Tall_Allen

There is no standard way to do iADT. There is also no evidence for the recommendations you are getting - everyone has his own way of doing it. Were your pelvic lymph nodes irradiated when you had salvage radiation to your prostate bed?

whitebird profile image
whitebird in reply to Tall_Allen

It was salvage radiation without a focal target, thus

I assume a fairly broad field. The lesion was noted in left pelvic wall LN. As I recall thr treatment it was described to directed at the prostatic bed.

Tall_Allen profile image
Tall_Allen in reply to whitebird

If you have only had your prostate bed treated, you might want to talk to an RO about salvage radiation of the pelvic lymph node area

Magnus1964 profile image
Magnus1964

Your PSA is still low. Considering that you have been in the fight for 18-19 years Stay on the study. When you have gotten all you can from it then move on to other ADT drugs.

in reply to Magnus1964

👍

abmicro profile image
abmicro

If you read my profile, I should be very depressed but I am not. Went from the competition dance floor to the couch and I now walk with a cane. Read on the forums that low Vit D can contribute to depression. I get my Vit D from Costco 5000 IU daily. I resolved my Hot flashes by doing half of a 0.1 estrodiol patch and a baby aspirin to keep the blood from getting too thick from the estrodiol. Studies also show better quality of life with that patch, lower risk of osteoporosis, better memory, better joints, and generally just feeling better. Half of a 0.1 patch is smaller than the 0.05 patch and wont itch on your skin like the larger patch and is cheaper to buy the 0.1 and cut in half. Generics change every 3 days, brand viville change weekly.

in reply to abmicro

Very interesting to me .Thank you .. good luck

elvismlv123 profile image
elvismlv123

You should complete the tx. It does no harm and might give you a long term benefit.Forget the SOC as the SOC isnt that good either.If you still are hormone sensitive use that attribute to your advantage. Not everyone can benefit from ADT and one year is minimum.

elvismlv123 profile image
elvismlv123

do not leave the study!!!!!!!!!!

j-o-h-n profile image
j-o-h-n

I reached into a hat and pulled out the answer. The answer is... Oops we have to take a short commercial break.....brb

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/07/2019 6:21 PM DST

You may also like...