Follow up 18 months later. I am due for another ADT injection in December. Spoke to the Urologist and he feels 18months is enough keeping with the European standard while the Oncologist would like me to stay the course and do the full 2 years. I am in favor of 18 months also, that would be nice. Still going to gym 5 to 6 days a week. PSA history post treatment is:sept2022 PSA.050 Dec 2022 PSA .020 March 2023 PSA.010 june 2023 PSA .020
I will do another analysis in December and if the PSA results are more of the same I would be inclined to stop the ADT.
Does anyone who has been in this space care to share their experience , or point me to a current study in favor or not of the 18 month guideline? Did anyone feel different between 18 months or 24 months of ADT? I love the support of this group. Best wishes from Cadiz , Spain
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hello, I’m not sure if this will help, but my husband who was just recently diagnosed is in a similar situation. Diagnosed with Gleason 9, high risk aggressive, the MO and RO both said that 24 months of ADT plus IMRT was the way to go. He is being treated at Memorial Sloan Kettering in NY. Of course nobody is happy about being on ADT for 2 years but if your side effects are not too severe and you can tolerate 6 more months, then I would go with your MO’s recommendation
Thanks. Much appreciated. And how far along are you with your treatment if I may ask? This seems to be a common question but most of the responses to this are 4 years old. And the US standard and the European standards seem to contrast a bit . It seems to be that 2 years may be the sweet spot . But at the same time the guidelines don't seem clear enough.
Any response I receive is definitely helpful and encouraging especially since I am on my own with this. I am sure your husband is glad to have your support . Of I am not a Dr. but hope he is exercising regularly since he got the diagnosis and treatment plan. This is helped me out a lot and in my case , I feel the ADT affects my memory , moods joints and I notice a difference when a miss a workout. All my best, and thanks for writing. Much appreciated.
I play scrabble and some bridge online and feel that it helps my memory. Of course, it may just be a little added reassurance but every little bit helps.
yes, we were always very active and he still works out. He is only 3 months into his treatment but not too bad yet with side effects and we hope this continues.
TA already responded and provided a link with valuable infos.
My personal status: I’m in month 21 after IMRT/VMAT and received my last Lupron 3-month injection end of October, so less than 3 months to go until vacation. I was also considering stopping after 18 months, but info from TA convinced me to do 24 months at least. WilI I go for another one in Jan 2024 to get the full 26 months? Probably not, but final decision is still to be made. I have side effects, but keep them pretty well under control with daily exercises (gymnastics, weight lifting, jogging) and plant based diet plus fish.
Regarding side effects: In May 2023 I was diagnosed with lymphoma, had surgery and received 6 cycles of chemo plus cns prophylaxis from June to October, still got my Lupron at regular dates. Sometimes tough, but I survived and now I’m in complete remission and happy. So, talking about Lupron side effects „only“, I recommend that you go with the 24 months minimum. From my experience, you won’t regret it.
I had saved an extensive number of links to studies/articles o n the topic of ADT duration.... here is another based on an analysis by one of the most prominent guys in this field.......
" “We now have estimates that show the benefit of adding and prolonging adjuvant hormone therapy for clinically relevant subsets of patients,” explained Dr. Spratt. “Our team showed that treating a group of approximately ten to 15 men with hormone therapy or extended adjuvant hormone therapy, for at least 18 months, prevented one man from developing metastatic disease ten years after treatment. This is dependent on patient and tumor specific factors, but gives us a more precise estimate to work with when it comes to recommending treatment options.”
Hmmmm? To me , this is saying that perhaps 90% of men endure the adverse consequences of ADT without any benefit ..at least when development of metastatic disease is considered. Almost all men suffer from ADT side effects...some severely, whereas only a small % experience a significant benefit ?
Another study found that ADT was of more benefit for Gleason 4+4 than for Gleason 9-10 ?
I conclude that no man should panic if he is unable to complete 24-26 months of ADT, or even unable to complete 18 months. This especially applies to older men IMHO.....give up good current QOL in the mere hope, not promise, that a certain amount of ADT will make a difference. I guess it depends on someone's priorities...... current QOL or life expectancy?
Fellow layman and study of one so, for what it's worth. Here's my clinical history.
In Jan 17 I started triplet therapy. Dr. Kwon and I had agreed to six cycles of taxotere, radiation to the entire PLN system and 24 months of ADT, Lupron, 3 month shots. He also discussed adding Xtandi given my PSADT, time to BCR, GS...
As treatment progressed, Dr. Kwon "marveled" at my response, held off on the Xtandi and when I asked about 18 versus 24 months of ADT, he was fine with 18, so, that's what we did.
I was off treatment for 4-1/2 years after triplet therapy. I will never know if the extra six months would have changed that, with each of us, there is no control study, just the decisions we make and the results. I was experiencing hot flashes, fatigue and muscle and joint stiffness. Were those side affects impeding living, no, but they sucked!
This year, PSA started increasing, our decision criteria was met, three or more consecutive increases, PSA between .5-1.0, so, we imaged with PLarify. It showed a single PLN though we know likely other sites too small to be seen. My oncologist initially talked about 24 months of Xtandi and Orgovyx along with the SBRT my radiologist recoimmended as being "curative." I looked at him and said, I am not sure curative is in my future, management of "chronic" PCa may be what we should think about in our decision. He thought about that and said, ok, let's do the Orgovyx for 12 months and SBRT, labs and consult every three months to decide whether we need to add Xtandi.
When the PSA dropped within the first six weeks from .77 to .13 then at three months to <.04, like Dr. Kwon, he saw no reason to add the Xtandi as he weighed side effects. We do labs in late January, if results stay the same, we'll stay the course until April which will be the 12 month point. If labs are the same we plan to come off treatment and actively monitor, labs and consults every three months.
Is this the right decision...I am comfortable with it, radiologist and oncologist both recommend it. I think they key is we have decision criteria to stop, continue, change and if we stop, active monitoring and decision criteria to start..
I will say, life off treatment was pretty damn good, life on treatment, ok...coming up in January on my 10 year anniversary of diagnosis. I remember well the words of my urologist reviewing the TRUS biopsy results, "Kevin, that's a pretty aggressive cancer...!"
You are a goldmine. I admire your decisions and for sharing your history and experience to help another get through this crossroads in treatment.thanks again good weekend !!!
It may help to shorten your focus, ask, will this work for the next 3-5 years...if so, there will be new treatments.
The objective is to manage it as a chronic disease, not necessarily as a fatal one by not letting the cancer get out of control.
It also requires an aggressive treatment strategy, combining treatments, bringing them forward early in the disease vice a linear and sequential mono therapy, each destined to fail.
I think most feel advanced PCa is not curable, I don't disagree. We are advancing in treatments involving radiologicals such as LU 177. Genomic testing is advancing with individualized treatments. The future is brighter than the past.
Several side effects really can bias the decision. Cardio issues are a known side effect (I now have 6 stents), and "brain-fog" - there have been some papers implying a link between ADT and Alzheimer's.
In my own experience - ADT for 18 months felt like aging 10 years in that period of time.
It is probably worth reviewing exactly what the studies showing longer ADT really tell us. Is it telling us 1 man out of 100 will live 6 months longer before dying of PCa? TA can probably tell us this sort of number. Are you going to be that 1 man? Do you want to live 6 months longer in a debilitated condition due to ADT?
How old are you - and how old do you expect to live with the extra 6 months or not? I'm old enough (77) and now crippled enough that another 6 months wasn't really going to make enough of a difference to endure the pain and risk of ADT.
One thing not too often talked about (there are a few papers that indicate it's a real thing) is - how many men die of cardio issues after completing ## months of ADT, and how many die while on ADT. Those dead men are probably included in the "success" side of the equation since they didn't die of PCa. Would they have died of PCa if they didn't do ## months of ADT? That's a coin toss. Would they have died of a cardio incident if they weren't on ADT?
My suggestion would be - to find the very best medical oncologist specializing in prostate, become their patient, and ask for their advice on the decision. Chances are the very best will be up to date on new studies and have some insight into new treatments that are in the pipeline. If the 18 months gets you 4-5 years of remission (vs 6 years?) chances are excellent that there will be much more effective treatments being used when the recurrence does occur.
Tough decision. I went for 18 months of ADT, (I'm G10).. so far "in remission" and "NED". I hope it's a durable remission. Your case is your case, and what other people have done shouldn't influence you, but they may provide you with things you haven't considered that factor into the decision. And find the best med-onc.... they're really worth the time to find.
Hey Don Thanks for sharing your insights and knowledge , all of your concerns was voiced by the Urologist and the 2 year guideline voiced by the Oncologist . I am concerned about the state of my mind and joint pain , and thanks for bringing up the possibility of the cardio issues. I am 68 going on 69 and i like still being able to be active . I am glad I brought up the topic and its great to hear from the thinktank hear based on experience. It makes a difference. Thanks again !!!
Based on what I've read, I'm convinced that ADT confers a significant benefit in terms of overall survival when used as an adjuvant to salvage radiation in high-risk (G 8/9/10) patients.
Whether that benefit is worth the misery that ADT carries with it is, I belief, a decision that every couple must make for themselves.
One of the huge benefits that Orgovyx offers is the opportunity to quit ADT and feel good again in just a few weeks (vs. 6 months) if the SEs are intolerable. I would have paid a fortune for that benefit had it been available to me.
I'm 15 mons into this adt, I just had this conversation with my doctor i got depressed over his positive talk because he suggested my 2 years is coming up i told him ill make 10 years on this he smiled, hes looking into the future and i should be happy to have such a caring doctor,best talk we ever had in this because of the time i have been on it.I have a therapist i have the gym i have the best wife ever and a supporting family why would i ever want off a drug that is saving my life and if i come off i wont see anything really positive results for another 15 mons so im going the distance. Through all of this the one person who should get anything they ever wanted would be my wife my care giver, the one know one ask how she is so remember them as your doing this. God Bless and what ever way you chose i hope it works out.
Well im almost at the exact place you are. 4+3 when diagnosed. Did radiation. Recurrence 6 years laters 2 lymph nodes positive. At 18 months on Lupron plus Apalutamide. Have to make that decision. one oncologist says go for 24 another says stop at 18. Its a really hard decision. I have taken 3-6 month depot shots of Lupron. For now to make the decision im going to do a 3 month shot and stay on the Apalutamide. Im active. I realize these drugs are doing damage we dont see. But Im doin OK on the drugs id rather be safe than sorry….thatll take me to 22 months where I can make another decision. Maybe hit the middle?!!!!! Good luck…..
My Two Cents: I do not know what's best, but if you can do 18 months, you can do 24 or even 26 months. Why take chances. I have been on ADT for 11 years. If I can do 11 years, I would think you can do 26 months. Regardless- good luck with whatever decision you make.
Good to hear 2 cents from an 11 year champion and your attitude . I hear what your saying, hit it hard, and never give up. Thanks for reaching out. Sending you all my best as well
Sorry to jump in here but struggling with this decision, great topic and timing for me, I am at the decision point for radiation, now 6 mos ADT GS8 RO wants to start IMRT this month, how were your side effects? I looked into Protons but could be a higher cost and they are talking balloon placement, it would delay treatment waiting for Protons consult, should just go with IMRT right? Some comments online about Protons reduced side effects, concentrated radiation etc,
Tolerable. Back aches , joint aches , sweat flashes , and lack of sleep from the sweating . A 45-50 minute exercise routine and walking has toned it down quite a bit . No issue with weight gain or hi or low blood pressure or diabetes . I dont know whats happening on the bone level or the mind level . I got a bone scan before i started and it was clean. I am learning a new language and I still play piano and do house concerts. I just needed to get reach out to get the conviction to go the extra 6 months. IMRT or surgery was what I was offered and the IMRT came first. I did 22 sessions and i do labs every 6 months . No problem with digestion or constipation (although I had that and gas during part of the sessions .) I take Tamsulosin an alpha blocker for urine flow . Hope my experience in progress helps. All my best from Spain .
The new language is German. Thanks for asking . The other languages besides English are Spanish and French. The German is a new challenge. Maldito sea!!!!
I guess between Spanish and French.... Italian would be sort of redundant.... I can't get past how you say I love you in German "Ich liebe dich" as compared to Spanish "te amo" or Greek "S'agapó". Lots to be desired when trying to be romantic in German, e.g "It's 2:00 PM We will be romantic, right meine Freundin, by the way do you have relatives in Germany?"
Anyway, Stay well, keep pounding those keys and “Auf Wiedersehen” of course.
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 11/11/2023 6:37 PM EST - Honor our Veterans.
Thank you for your response, I agree on exercise, try to do 30 min on the treadmill or bike then light weights, when hit with depression I go straight to the gym, really helps.
Hahaha. The balloon placement while a little embarrassing when done by a good looking female radiologist is a nothing burger. Also how else do stabilize it or is not necessary with imrt?
I am gleason 7(4+3), 3 positive lymph nodes after RP, 37 sessions of radiation, I have been on ADT for 33 months, I still have next week to receive one dose of ADT, I do not do any exercises, my body weight is a little high in the area abdomen, but nothing terrible or worrying, PSA from 0.01 to 0.05 in two years, last 3 PSA measurements in 9 months 0.00. My oncologist initially anticipated ADT for 24 months, but extended the ADT to 36 months. I hope everything will be fine. Hello everyone and I wish you to beat this disease.
Thanks . Same here . Respect .....33 months and a similar Gleeson score . Thanks for sharing . The responses have been a sobering experience. Bon weekend .
Its a tough call but for what it’s worth I stopped my adt after 7 months and def wasn’t going to do 24. One can always get back on it as studies show that people vacation intermittently have no difference in mortality, furthermore I just think the adt is much more harmful than the cancer ♋️. I opted to go ivermectin w cbd and thus far am having great results but the most important thing Is I’m not killing myself by depriving my body of the necessary testosterone and latest studies are showing that alternating high testosterone is actually very effective in killing cancer… Good luck 🍀 with whichever route you go…
I am glad your novel treatment is producing the desired results. Wouldn't even know how one takes that alternative , and something I haven't even heard of , but I'm glad your getting encouraging results and encouraging others Thanks for sharing that . And thanks for your good wishes.
Yes there are quite a few articles on ivermectin, cbd and cancer, specifically breast n prostate on the govt’s pub med journals. If you have any questions on these treatments please feel free to ask as the evidence is overwhelming in its effectiveness, especially in countries where they can’t afford soc like Ecuador..😁
I went through this in Feb 2020 with my oncologist at MD Anderson as my 18 months on ADT came up. I was scheduled for 24 months. I had a tumor out of the prostate. Tumor was classified T4 with no positive uptakes for cancer. At that time 18 months was declared as good as 24 based on their trials. Time will tell. Not sure they know for every situation especially one like mine that is out of the capsule. Obviously I’m hoping it worked. I had proton radiation and Zytiga. Started the zytiga 8 months prior to radiation to shrink the tumor.
Everyone's results are different. In my case, I did 12 months of ADT plus Xtandi plus Xgeva shots for bones. At age 79, I was fighting a PSA of 29 'after' the radical surgery [ psa 120 before the op} and bone mets.. After the 12 months of therapy, the PSMA scan showed no mets and a psa of .05..
At that point I decided to go on vacation where I have stayed for a year.. I update my PSA every 3 months [it remains steady at .05].. Also had another PSMA scan at the 6 month mark of vacation which was clean. QoL is a tremendous influence in making my decisions, right or wrong but like everyone else, the SE's of ADT [ Orgovix, sp?] were devasting to live with, no denying that they worked and I'm so blessed to be in the current of a holding plan. So far/so good. I wish only the best results for all. Parman..
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