18 months after my RP, PSA started to increase, slowly but steadily. Time for ADT is approaching. My Onco hints, cautiously, that as I have very high testosterone, my body will have to compensate much more for the sharp T decrease after the start of ADT therapy which will very probably result in worse side effects than "normal". My research did not bring meaningful results...
Any views, recommendations?
Thanks.
I’d wait and see , a large percentage of adt brothers sail right thru fairly easily. Chances are good you could be one of those ( not me unfortunately, I hit the 5% devastated group yayahahaha).
Some adt treatments may have more SEs than others but are very effective. I’m sure the medical brains on the group can expand on that thought better than I .
Keep up the good thoughts that your adt experience will be on the milder side brother. Chances are in your favor.
Peace 👍👍👍👍✌️✌️✌️😁
We are the 5% ers!
"High T= very bad side effects" is NOT true.
I had T equal to 650 (now less than 10) after 8 months.
and I had few mild side effects from Lupron. Even those side effects are almost 85% gone due to good nutrition and lot of walking and dancing every day and playing soccer (gently)on weekends.
LearnAll is correct. All of us have different reactions and side effects.
My T was 682...after 3 one month shots of Lupron, my T is below 10.
Fortunate for me, my side effects are much better than I expected.
Fatigue in the afternoon is my biggest issue. After 2 pm, have to take a break or even a nap. Then, back at 80 %. Have to go to the gym early and only ski 1/2 days. After my third shot, started having mild cold/ hot flashes.
Very tolerable... lucky compared to some our brothers.
Edward,
I just finished reading a research study which concludes that if you had high T like 600-1000 range...and after ADT it falls to less than 10, it indicates longer progression free as well as overall survival...its like Nadir PSA below 0.2 bodes well , Nadir T below 10 is good sign.
First of all salvage radiation is approaching. And it seems it will take some time now to reach a PSA of 0.2 ng/ml to trigger that. After that you can wait till the PSA value reaches e.g. 4 ng/ml or, if you are not anxious, 10 ng/ml to start with ADT.
I am a new commer to PSA increase after RP and have many questions as to what to do and when. Stats: RARP almost 4 years ago because PSA went up from 10 to 20 in the previous two years, A few more positive cores gleason 7 (3&4). Post RP findings: no perinural extentions, no capsular extensions, seminal vesicles and lymph nodes removed, negative margins, cancer in about 10% of prostate. Did PSA testing every 6 months for two years at least and always .0 undetectable then never was informed to keep testing. Just did a health check for Medicare now I am 66yrs old and PSA came back at .45. My regular doctor didn't realize this was a problem until I explained it to him. Saw my old urologist the next day and he sets me up for retest in 6 months. Then that night my surgeon got the info and called me telling me we better get me on ADT and Radiation. My heart sank. Don't like side effects from either and Q O L is very important. Any input would be greatly appreciated.
If the PSA value rises above 0.2 the recommendation is to get the prostate bed radiated before a value of 0.5 is reached. This assumes some cancer cells were left there. So to follow the standard of care get the radiation.
You write: "lymph nodes removed". Were these lymph nodes affected, did the report specify N1? In that case a bigger area should be radiated to radiate affected lymph nodes too. You can discuss this with the RO.
Being a Gleason 3+4, you should be able to omit the ADT with this radiation. Mention this study to the RO and say QoL is very important to you. Therefore you would like to follow the results of this study:
astro.org/News-and-Publicat...
Thanks for the info and that link. I just went to see the surgeon that did my RARP regarding his recommendation to start with a six month Lupron injection followed by 40 sessions of radiation. He was not interested in the copy of of the ASTRO report and after being late to meet me for the appointment did not have much time for questions and answers. He said even with negative margins and no involvement in the lymph nodes that were removed that due to the PSA at 20 pre-op it would would be best to do both. He said only about 1 in 10 with my stats have recurrance and if I go this route I will have a 50/50 chance of being cancer free. Flip a coin! So here I am freaking out over what to do and how the radiation may affect bladder and bowel functions and what the side effects from six months on Lupron will do to me. I am quite active and spend a lot of time outdoor and with spring coming in Wisconsin usually do a quite large garden and enjoy motorcycling. I am scheduled to meet with oncologist March 16th (wife and I are going on ocean front vacation the week before so we scheduled it for when we get back because I don't want to feel symptoms and be sure to enjoy myself before all this) then get my Lupron shot the same morning. I don't know what the dose is for six month term and wonder if they go by weight only or if they even check your current T levels. He says the radiation does not have to start immediately. Is it best to wait a while to let the Lupron work at dropping T before starting radiation? I was hoping just do the radiation and then watch PSA but then what do you do if it rises later, more longer term Lupron? Your response will be greatly appreciated.
You can do ADT before radiation to shrink the tumor first. This is usually done when you do radiation as primary therapy, not for salvage radiation.
Before the Lupron shot you should get about two weeks of Bicalutamide as flare-up protection.
If they just radiate the prostate, side effects are usually low, apart from the fact that you have to show up for the radiation every day for over six weeks. If they extend the radiated area to the pelvis this can cause more side effects.
If your doctor just says: I know what I am doing and you have to do that I cannot give you advice. Here is information about the side effects of ADT:
No correlation with me and high T and SE’s. My T was a whopping 1200 before dx a year ago, and now it’s < 10 on Lupron with basically the normal SE’s like muscle fatigue and some forgetfulness. Doable! If I drop dead tomorrow from a heart attack, different story.
My urologist and RO said the same thing. 46 years old, in good shape and T over 1000. Work every day averaging 5-10 km on my feet. Try to work the muscles at least every other day. Hot flashes were bad but better with 75mg venlafaxine daily. Libido pretty much vanished as such informed 😢.
Definitely some muscle loss and new belly fat I never had before. If it wasn’t for waking up anywhere from 2-6 times a night for a piss or the sweats, I think I would be feeling pretty good overall. Going for 4th three month shot next week. And I am counting down to 18 months protocol and see if the beast is gone for good, and get that libido back!
I'll put a theory to test here that might be part of the answer.
There's a link to hot flashes (one of several potential SEs) that comes to mind.
Call it male menopause - ADT artificially ages you as a result in the loss of 'T' in your system.
Your body 'thermostat' goes out of control, based on certain situations and elapsed timelines.
The longer the ADT is used, the more time your body 're-adjusts' to the loss of the hormones that helped make you tick.
When I started ADT, at the age of 65, they told me the treatment would put me in my eighties.
This could be permanent or temporary, based on the duration of ADT.
I just connected the dots ....
BUT, many men seem to do OK with ADT, so what I pointed to is not a universal response.
Hopefully, you'll be fine- if not - there is help for the SEs that seem to work for most.
Well, personally (having tried this recently and very surprisingly pleased) would suggest starting with degarelix (Firmagon) which will bring your T to castrate (<20) within 24 hours without any flare. See how you feel. You can continue with degarelix which can actually sustain castrate condition for 3 months rather than needing monthly injections. (But this should be checked by monitoring T levels for the 3 months.)
If the ADT side effects are not acceptable, or even if they are, consider adding an Estradiol patch to the regimen. I have, and would, use a 0.10 mg/24 hrs, biweekly patch and change it out every 2 days (rather than every 4). This can be adjusted up or down per estradiol levels and hot flashes. I felt truly excellent on this combination. Research "PATCH" trial on this site for more.
In my country and in my situation oncologists start often with goserelin (Zoladex), I have no clue why. When asked my MO just said he has good experience with it. I suspect it could be also motivated by relatively low price of goserelin compared to Lupron.
One typical approach is to use an GNRH agonist such as goserelin with an androgen receptor antagonist, such as bicalutamide which should stop any 'flare' as the initial goserelin stimulus to produce more testosterone is nullified.
Interesting. My T wasn't particularly high when I started ADT (at age 72, last checked was around 350-400) - now it's less than10.
I doubt if anyone can predict how ADT will change you. Mine seems to have gone the full tilt on awful (weight gain, muscle weakness and muscle loss, accelerated arthritis, and I suspect maybe some coronary damage.) Other people have no problem with it. A good friend is on it for life, and aside from some hot flashes (addressed by medicine) he basically isn't bothered by it.
You will become what's basically a eunuch, but that's a given. For me, that wasn't a huge issue.. for some men it is.
As Kaliber said - wait and see. Is your onco talking about radiation at all? It would seem that would be the next step after a relapse.
Thanks, I think I do know what the ADT side effects are - or could be. Radiation is the logical next step but I already now have an unpleasant mix: something very close to urethra stricture after the RP and Irritable Bowel Syndrome. I am hesitating but if PSA shoots upwards I will have to take a quick decision...
M i n d B l o w n .... 🤯 !!! Yayahahahaya speaking of medical brains ...hay man , don’t try to get Into to my head ..... there’s not enough room for me in there ! Yayahahahaya you know some amazing good stuff Nal ... impressive.
Btw added that serving of breakfast fruit ( pectin ) to my routine yesterday. Kinda fits right in with the Pomegranate , Broccoli , Saffron and all the rest yummm yummm 👍👍👍 lol.
First of all it will stop you from stuttering....As Don said you will basically be a eunuch, but that's okay since women will no longer fear you.... Just grin and bear it... and laugh...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/05/2020 6:04 PM EST
I manage the one major side effect of ADT (hot flushes and sweats) with once-daily venlafaxine. This generic anti-depression drug also has adjusted my attitude (in a positive way, according to my wife).
You may or may not know that I spent 35 years formal monastic based training with a Zoto Zen Buddhist monastery ... being formally ordained there for over twenty five years . In my old age I’m retired from that monastic involvement moving on beyond to “ practice on my own “ . As Soto Zen Buddhist , I have the upmost respect and acceptance for all peoples of earnest religious endeavor ...... faith based religions in particular. 🌼🌸🦋🌻👍
Thanks. Would you recommend that I start tests for DHT as well?
I was on a high T clinical trial and went from 1200 to about zero in a month- it was not a big deal for me. Don’t worry about it
43 years ago when I was getting married to my 18 year old current wife, her father was a commander in the local Knights Of Columbus , and a senior deacon in the local Catholic Church. I used to ask him what he thought about my being a Zen Buddhist. What was the first thought that came to his mind. Without hesitation ,he would say “ Pagan “ yayahahaha. Didn’t flinch saying it either. I was , however, just what my wife wanted after 18 years in that very strict conservative Catholic household. A pagan ! Yayahahahaya yayahahahaya I had the upmost respect for Jack’s views , not so much back the other way I’m afraid. 🦋🌸🌼🌻 😁
I’ve seen cases like yours often . A rise after rp.. jump in the adt train with the rest of us . My theory is the more t and macho a guy is the harder the fall. What is your t level .. If your a calm many already you should fare the adt better . Non like adt but I can work . Adt and Rt kept me pc free for five years.. Good luck ..
Managing side effects of ADT
Post ADT Testosterone replacement therapy
Living with and Minimizing ADT Side Effects
