The time has come to find out if my treatments were successful or not.
Today I received my final 3 mo Eligard injection and will no longer need to take the daily abiraterone acetate ( zytiga) and prednisone. I have a withdrawal schedule for the prednisone that I developed with my MO.
My psa <0,01 and T < 1 ng/dl. Pretty good result I think.
In addition to ADT + Zytiga. I underwent a RP followed by 39 IMRT sessons. In June and Oct, Nov 2019 respectively.
My post RP pathology was G9 pT3bN1M0 with ECE and SVI. A Terrible result at the age of 53 IMHO.
It's hard to believe it's been 2 years. How time goes by so fast?
I’ll be thinking of you. I’m pretty much in the same boat. Got my last 4 month Lupron shot in April. Completed RT about 18 months ago and it’s time to see if it was effective and puts me into a nice long remission. Don’t know about you but I’m rather nervous. Certainly glad for the vacation but the security blanket is being pulled away.
Thank you. And yes, I'm a little nervous but this eligard shot won't start wearing off until November.I'm going to use this 90+ days to begin an anti-cancer regiment that my MO asked me not to undertake while on Zytiga.
I'll reciprocate the thought of a long durable remission for you as well.
I started to assemble a list of supplements that are generally accepted as having anti-cancer properties. I was asking my MO about them. He wasn't against them in general, he just didn't want me taking them while I'm under treatment. I'm sure your getting most of these yourself thru diet. I just want to add a supp to ensure I'm getting a consistent amount.
I had my last eligard shot last November after 3 long years. Im starting to get my mind back although my wife might have different thoughts. And my strength is improving. Now the waiting and praying begins. Mike
My daughter bugged me to get a DNA testing done 2 years ago ( 23andMe). Anyhoo, I thought I was 50 Irish and 50 German. Turns out I'm 85 Irish and 5 German.
My wife works for and Irish company ( icon clinical research)
One of the first 50 employees i think. Trying to get to Ireland but she doesn't want to go...so now I'm planning a trip with my travel buddy...it won't end well...we like the 🍺 🍻 🍺 🍻 too much.
Tom I have had nearly ‘identical’ pathology and treatments to you and Fireandice123, except 4+3 instead of 9.
Of course there is no identical pathology, but it’s close. I had my last 3 month Eligard in September of ‘20. Testosterone stayed below 50 until April when it climbed to 250 and as of June 510. PSA remains undetectable so far.
Good times indeed! Libido is still not great but is slowly returning. But I feel tremendous, all side effects gone and as you know it was a long list.
I tolerated the ADT well but put on some unwanted fat despite being very athletic and mostly great diet. Just had to start eating less and did…I have committed to caloric restriction and almost no carbohydrates and it’s working well.
Having T back is great but I’m not naive. I’ll enjoy every second of this, knowing it could change at any PSA test in the future.
Future! In a sense, this word is no longer in my vocabulary. I’m happier for it. I think you know what I mean.
Which is, I do what I can and leave the results alone! The fitness, the family and friends, work/lifestyle, the supplements, the diet all of it.
The way I see it, If I do my best and it comes back anyway, at least I won’t be wondering if it could have been different with better effort on my part. Knowing I’m doing what I can is very important to me and comforts me. Do what comforts you and enjoy your recovery!
1. You’ve been through a lot physically, so know your numbers and if/how they’re moving! Periodic blood counts, lipid panel, Dexa scan for body composition and bone density, BP, glucose, dental hygiene etc.
2. Let the supplements be just that. Diet and exercise are vastly more important than supplements. Great luck to you!
Thanks for the reply. We are similar in other ways too.
I'm very active and have maintained a decent diet. Mostly plant based. I have been eating more meat lately but during this next chapter in the fight against this dastardly disease, I'm going to clean up the diet and hit the gym more regularly, along with getting in my bike rides.
Again, thanks for the advice and encouragement.
PS. It feels great not having to take those 4 horse pills every morning.
Had to stop and make sure I didn’t type your original post. We are almost exactly in the same boat (but you’re a few months ahead of me). I too am 53. Had RP in October. Pathology was identical (G9 pT3bN1M0 with ECE, SVI and positive margin). Had 39 IMRT salvage radiation sessions. Just had my 3rd three month Lupron injection and take the 4 horse pills daily. Right now my PSA and testosterone are negligible as well. Looking forward to the ADT vacation —and when the time comes I too will hold my breath and pray for a long remission.
Please keep us updated on your journey and I wish nothing but the best for you!
Thanks for the reply...It is shocking to see how many members are the same age (or younger) than me with this terrible disease...so many new treatments and treatment protocols have really changed the outcome landscape.
To answer your questions...2 years that commenced July 2019 and officially end in October 2021 when this last Eligard shot wears off.
Are you still working? Working while on ADT is an accomplishment that often gets overlooked.
I could not agree more. Like you I am hoping the longer I can push this disease back, the more options I will have when I need them most. I’m sure you’re thrilled to be ceasing the ADT regimen but completely understand any nervousness/apprehension stopping all therapies and waiting. I still have a little ways to go but I can’t wait to be done with it for all the obvious reasons.
As for work, yes, still doing at least 50 hours a week at the office (I have a law firm) and as much as I am exhausted by the afternoon, it keeps my mind off of the crappy situation we share. My plan has always been to slow down and semi retire at 60 if I’m able, but I’ve been rethinking that and will probably try and move that goalpost a little closer.
I wish you all the best. I can report to you that with Gleason 9 disease my ADT “vacation” was short-lived and worthless to me. Less than a year passed until a rapid rise in PSA put me back on ADT for life.
Yep...definitely have some reservations about this but I think everyone has to give it a shot. The one difference now vs 2012 was Zytiga out of the gate was not SOC...well see if that makes a difference.
TomTom1111, I'm curious, if you don't mind sharing....was this the plan of action from the start of treatment - to only do ADT and Zytiga for a specific amount of time or when the numbers got to a certain point, or did you decide on this strategy later? My husband had similar starting numbers, G9 4+5, pT3b, pNO, positive margins with negative lymph node, PSA at diagnosis was 70. Did RP, salvage radiation and now Zoladex without Zytiga since Nov. 2020 with good response, PSA currently .04, no distant mets according to PSMA Scan done Oct. 2020. At MO appointment today, when my husband asked about the possibility of a vacation down the road the doc just said he would only consider that if he wasn’t tolerating ADT well.
Yes. After failing the RP, which really didn't come as a surprise to me. I started 2 years of ADT+Zytiga and 39 IMRT. That was the original treatment plan and it's right out of the NCCN guidelines.
Yes the NCCN guidelines Tom…which are probably due for a change.
The difference in my treatment was a clinical trial with the ADT and Zytiga commencing only a few months after RP, PLUS chemo, followed by IMRT a few months after that-EVEN though I was undetectable post op.
This-very aggressive adjuvant treatment without waiting for RP to fail-I believe with become SOC for guys like us until something actually different comes along.
Mrs Snappy, if YOU don’t mind sharing, how long after RP did he begin the Zoladex and the radiation? Were they started at the same time or apart? (My details below)
London441, it was 7 months after RP that he did salvage radiation and then 18 months after salvage to Zoladex. You can read the details in my profile. We are just over 3 years out from diagnosis.
Hey Tom. Same pathology and treatment plan except I am a bit older. 68. Stopped Lupron and Zytiga 3 months ago. Having my 1st PSA test tomorrow. 👀 A bit nervous! Handled ADT very well. Feel the same now as I did 3months ago. Good luck to both of us!
3 months ago is nothing, though I’m glad you feel the ‘same’ if that means good. You should feel quite a bit better yet in a few more months when it actually starts wearing off.
It depends more on your testosterone level at diagnosis and how long you were on Lupron more than being 68, if your health is good otherwise.
Higher baseline T and shorter Lupron duration are favorable.
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