I’m 62, diagnosed 3 months ago with advanced prostate cancer, metastasized with bone involvement. Started Lupron 2 months ago and Zytiga 2 weeks ago. They tell me I’ll never come off the meds.😕
I’m looking to see how long some of you guys have been doing this ADT thing, either my same regiment or something different.
Thanks in advance
8 years since diagnosis. Surgery, radiation (3 times). One bone met. PSA undetectable with Orgovyx. Living in the holding pattern. Age 73.
I’ve been on ADT three times. The first time was Lupron and Zytiga for about 15 months. My PSA went to undetectable and I went on an ADT vacation for about 9 months. At that point my PSA rose and I had RT and was back on just Lupron for about 21 months. Took a year long vacation until last August and am now back on Lupron only.
Thanks! I’m really curious to hear about your experience as well as others. Radiation and surgery aren’t an option because of past fistula complications so I’m a lifer on meds.
I'm in your boat with no surgery or radiation. I had radiation for colon cancer 30 years ago. No surgery because once c spreads you can't, plus I'm too old (78)
I am also on Lupron and Zytiga. It's been one year so far. I have lots of strange pains (legs, hips, one side) that come and go. Some days I have almost no pain, others it's tough.
But I also have neurapathy, arthritis, a pinched nerve in my neck, and periodic sciatica.
Otherwise, I'm in perfect health!
Reading about your pinched nerve and sciatica.I only went to the doctors because of pain in the neck radiating pain in the arm and what felt like sciatica down the leg .After the big PSMA scan they found i had a spot of mets in the neck pushing towards the spinal cord.After an emergency zap of radiation to the neck no pain in neck arms or lower leg.Not to sure if your had x rays to that area, but be mindful of it Regards brian
I had an xray, bone scan and MRI. Thank goodness no mets in neck. MRI and xray were clear that arthritis is causing pressure on spinal chord.
did you become undetectable after first lupron ( i am at 6 months )?
Yes. I was undetectable at about 6 months.
hum, still at 2 for me. (2 at 3 months, 2 at 6 months ) : all restaging testing negative for any progression. 2 LN only are now gone. Ty
Hello, interested to know how you've been making out the last year. Started Lupron Zytiga 3 months ago and MO hesitant to put me on vacation, PSA =.1
I am a G 9 have been on Lupron for 6 yrs and will be a lifer.
6 years, 5 months. Still going strong with no end in the immediate future
I have been on & off ADT for 11 years now & looks like I will be taking it On more often than having vacations. PSA was 2.6 two months ago & previously down to .6 thanks to Firmagon monthly.
Dear ARIES29
cngratulations.yu You are very successful. Will you kind inform how you can manage to reach so good psa. For example, some complementary alternative medicine, training, special food, e.tc.
To put it simply, I stayed away from the ADT drugs for as long as I could therefore not commencing the cycle we see here.
I can not tolerate Lupron or casodex & even had two shots of LU-177 & it always eventually comes back. I recommend plenty of exercise & different supplements, the most important is tumeric or curcumin & of course clean water.
I have been on Lupron for nine years.
4-1/2 years, started at age 59. No surgery, radiation or chemo.
Psa holds between 0.02 and 0.04
Three plus years for me.
Soon will be 11 years. PSA holding at <0.1
Howdy. 90 days of Lupron and 60 + days of Xtandia. No longer interested in Pornhub, haha. Also told the rest of my life or until they stop working.
Wow, you are young for all that. No more pornhub is positive though. I always felt that porn was a cancer all it’s own.
Have you looked in to having genetic testing? It could help guide you through viable treatment options.
How so? Thanks
Shold you be found with a genetic mutation, three are usually specific treatments for such. For example, if you are BRCA2 you would be treated with a PARP drug.
OldGuysRule...I was on ADT a total of 21 months and with hard physical exercise did not have much in way of side effects...except no one told me of the effects Lupron would have on my penile tissue, health and function...if this area holds some meaning then its time you researched it extensively....there are things you can do while on ADT to preserve your penile health...its critical in the first 6 months and if you do nothing by 12 months some damage is irreversible (scaring and venous leak)...now if your Doctor went over all of this and you are on a penile 'preservation' regime great...if not be forewarned...I was told nothing and by the time I found out a year had gone by and I have had damage done that must be corrected hopefully when I get an implant (nothing works anymore for me)...TNX
PS if I had it to do over I would still get the ADT, but I would be more knowledgeable on what to do while on ADT to preserve tissue and function...see my blog THREAD for articles I have posted on this issue, or do some quick research...TNX2
RMontana, how can we reach your blog? Can you post a link? Thanks!
I really am not sure. I double click on my image, my icon n that takes me to a page where all my previous posts r located. See if that works. Otherwise I’ll have to ask.
I can also repost something if u can tell me what ur looking for , like my “What would I do different…” post. TNX
Hello RMontana, can you please tell how I can view the articles you posted on penile heath? Thanks
OK...I was waiting to compile this 1hr, 36 min Podcast...Brother what you dont learn in this you dont need to know....A LOT is crammed into this podcast.
Thanks! I’ll check it out.
firmagon which is like lupron for about 6 yrs and exgiva for 2yrs till I got dead jaw syndrome . 3 pelvic Mets disappeared and my psa started at 9 went as low as 1 and now holding steady at 2.5
Who knows how long adt works ,only the Lord🙏
Be careful crossing the street you could get run over by a truck 😂 don’t worry it is all in Gods hands 🙏😂👍🍷🎼🏌️♂️🎣🎲
Good question i am 60 when this started i was told to go through a lot of tests but the one was a biopsy no one told me what to expect when they did it the dude put it in and it hurt like hell, i said take it out i can't take it so he did then he said but i was there why stop i replied i didnt know but you better do it again so my wife doesn't kill me, the start of confusion, Down to sunny brook where it was removed then the stupid catheter i thought it would be there for 7 days no two weeks or more and when i walked in they said if you dont uranate they will put it back in thank God i urinated the guy in the next room was pleading to try again again confusion, Then they say it was bad and cancer had spread ok so next its the Lupron like you know they introduce hormones and that's when i reliazed that im going to be on this forever, know I'm really mixed up in my body and still know one has explained that so when it came time for the Zytica and prednisone i sat in the cancer center pharmacie brain all fogged up i just wanted to cry it took me at least an hour before I could get up to that window but i didn't know everytime you go to the pharmacy there is always a Suprise, the shot that helps the bones i didnt see that coming. I've been married 40 years we tried making love with help from cealis but we figured together she was going through her life stuff and we won't try again im just really blessed to have her she kept telling me along the way its ok your not you due to what they introduce into me, Now im balancing, not working trying to live and that cancer center always sending me doctor appointments and blood and ultra sounds now im at peace but the whole journey i could have used a mentor. I did not put down 33 treatments of radiation that was a ride don't exercise dont eat well, they want you to eat all the bad but do it because it will help you, they had nice people there but also some really mean people who kept telling me it's not my fault as they sent me out of the room to try again water and more water.
Im 60 years old retired living life remember after your all done, to live life don't be mad relax talk soft i find there are times going through these hot flashed it pushes things i don't understand but im living life and i have a great support in my wife and I've only been into this for 10 months and i feel like it never happened, but it did.
8 1/2 years….
I'm 59, Metastatic 4 years ago...on/off ADT since, orgovyx currently, which is better than lupron. Just went back on after 4 months off and PSA rose from undetectable to 2.2....hoping it works again and I can then start planning my next vaca...last PSMA scan was Feb 2021 and showed only lymph node mets still. Never once had any symptoms from PCa, only the treatments....chemo, surgery, radiation, and 2 rounds of Lu177 in germany that didn't pan out. I'm holding out hope that newer treatments in trials can one day either cure or get me off ADT for good.
5 years and still
I’ve been on ADT on and off for 44 months now. I’m still hormone sensitive. If all goes well, I’m looking forward to an ADT vacation next month. 😊
4.5 years on Lupron and Zytiga. DX at 64. PSA 17 and GL 9. Was undetectable at two years and is now slowly creeping up. Still low at .023. Really hate the meds but I'm still here. Pay attention to what RMontana said about penile health. I didn't and am paying the price.
hey OGR, I’m 68, and hv been on Zytiga-pre + Lupron (3mos) for only 2 yrs now. I had SABR to my Prostate (5 days + T5 spine 3 days) this past January. My PSA now at .022. Pylarfy gal68 PSMA PET was done 2 mos ago (my first, and bone, prostate, organs all clear. 3 lymph nodes showing. If you tap on my picture icon, it will take you to my full and updated bio.
BUT YOU SHOULD KNOW THERE ARE AT LEAST 5 GUYS ON THIS SITE WITH 20 yrs+. Things are changing for the better every year. Have faith Brother. Cure, or more likely extended remission is coming. We all hope soon. Some good strides are being made in BAT, anD mBAT to extend that time to The dreaded Hormone Resistance. Best to you and yours, Mike
Thanks!
I am 84 been on Eligard since 2010 added Erleada in 2017, still kicking low PSA.
I started Erleada with every-3-month Lupron in March 2020, very few issues, doing well so far.
I have been on treatments for 7 years now and still going to medical oncologist every 26 to 28 days. Started with Firmagon injections and after 18 months they failed. Changed to Ellegard injections every 3 months and Zytiga along with prednisone every day. I also am on a clinical trial to help.
My PSA is bouncing around 3.65 I had 45 Treatments of radiation to prostate at first 7 years ago. I do have several Bone Metastasis in spinal column, Ribs and Hip. Had 12 more treatments of radiation to hip couple years ago. pain levels decreased there a bit.
Had to have a Medtronic Morphine implant to auto feed morphine into my spinal column 24/7 to relieve none and nerve pain lower back. A catheter was inserted into my spinal column about half way up my back, This truly helped for my extensive pain. Cance that spread to lower spine damaged my bones so bad that I could not have a fusion done.
These things can happen but the medical team always has a way to help give you quality of life. I'm so thankful for the care I receive . I am not without pain but at least tolerable.
The meds and injections are at least holding down further spread . It works. I also take Exgeva injections to help strengthen my bones. Been having to miss them quite often due to my calcium being too low.
You will do fine with ADT. Think positive and never give up. New Treatments are always coming in for us. Thanks for listening and I hope I was of some help to you. Remember every ones cancer and body is different. Fights it differently. My prognosis does not reflect on anyone else as far as the type of spread and damage.
There are so many out there that did not have a situation like mine. THINK POSITIVE
You will be fine. Barry
That sentence should have been to relieve nerve and bone pain
Thanks for your story and encouragement!
8 years since diagnosis, Gleason 9, was on Lupron for 7 years, then had orchiectomy to get rid of Lupron (everything was completely atrophied by then anyway). Xtandi failed after 6 years (concurrent with Lupron). Chem did not go well for me and am waiting to meet with RO about Pluvicto.
I live on my own, do PT exercises 3x week and a light workout 3x week and "rest" on Sunday. I'm rewiring lights in the basement, putting a skim coat on the cement front steps and running ethernet cables throughout my house while keeping the place running fixing meals, doing cleaning and laundry, etc. Not bad for a 73 year old. Although sometimes it seems like the doctors would be much happier if I would just shut up, lay down and stop breathing! LOL
Way to hang in the Miccoman!
73 yrs. old. Dx in December 2016, GL 8 and 3 small bone mets. SBRT and IMRT in 2017. ADT from Feb. 2017 to June 2019. Zytiga from Sept. 2017 to June 2019. Since June 2019 no treatments on orders of MSK and Harford Healthcare. PSA <.02 since August 2017.
Forgot to add - rp on 5/23/17
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