Please warriors, help me to finding the right answers. According to my bio and studies I shall be under ADT for two years. I started 01/2022. How many 3-months-injections should I go for? When I get my last one in October 2023, I would have full cover until 01/2024. But last time my testosterone recovery took six months. So getting my last one in July 2022 should also provide a total of 24 months coverage. Currently my PSA is undetectable. What would you do?
How many 3-months injections of lupro... - Advanced Prostate...
How many 3-months injections of lupron for 2-year-long ADT
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Nusch
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I think you are asking about the time until your next vacation? While it may take some time to recover your testosterone, that is not part of the calculation. However, there is no point in having a vacation if your testosterone does not recover enough to give you a break.
Yes, and my testosterone recovered, but only starting 6+ months.
Would a low does of testorone cypionate or other TRT (Androgel perhaps) be reasonable to kick start and/or maintain an ADT vacation?
Not outside of a clinical trial. Morgentaler tried that in metastatic men and the results were disastrous.
"three [of ten] showed progression, all with new foci of bone metastases...Three men died during TTh" Average PSA of metastatic men rose from about 28 ng/ml to about 72 ng/ml.
liebertpub.com/doi/10.1089/...
(He tries to spin the deaths positively, but men with PCa usually die from any of multiple causes due general weakening of the physical systems. That's why Overall Survival, and not cause-specific survival is used as the endpoint in clinical trials.)
Thanks. Didn't sound like a good idea, but good to know it's been looked at.
Yet , repeatedly, we see the headlines about BCR-free at X years for treatment A, and treatment B had a worse BCR-free number.....or the same comoariosn will be made about metastais-free or PCA -specific death rates' Then later in such reports/studies, we find no meaningful difference in overall survival between the 2 treatments. And often, when that is the case, the study seems to proclain treatment A the better result??????
My husband and I ask you, please, to explain about “there is no point”…are you saying that if you recover some T, this might facilitate the cancer..but it might not help the negative effects of no T such as bone, muscle loss?
Why take the drugs if T doesn’t recover?
I am saying the only reason to have a break from ADT is if one is suffering from the symptoms of low T so much that one needs a break for quality of life reasons as well as the other things T is good for. So if T doesn't recover enough to provide a better QOL etc. before the cancer re-starts growing, what is the point of the break?
My main reason to do a one time vacation is to see, if I‘m cured.
That curiosity can harm you - stopping and restarting is dangerous with adjuvant ADT. Our best data is that for men with positive pelvic LNs treated with radiation is that 3 years of ADT with 2 years of abiraterone are needed after the radiation. This has to be continuous. The reason that it takes so long is that it is trying to kill off the most resistant cancer cells. Similarly, one would never stop taking a long course of antibiotics midstream to see if it worked. That would preserve only the most resistant bacteria, and would give you a worse infection than you would have otherwise had.
If you were to stop, you would no doubt have undetectable PSA for a time. That's because PSA is only detected in the serum when a tumor is large enough to create its own blood supply. It will take some time to grow to that size, but when it does, the cancer is likely to be more resistant to hormone therapy than it is now.
But did I get you wrong, that you posted 24 months of ADT for cases like mine? You posted links from your website where I read 24 months
At least 24 months.
In the STAMPEDE trial ADT was given for 3 years and abiraterone for the first 2 of those years.
thelancet.com/journals/lanc...
But would 2 years of ADT be enough? No one knows yet.
In the current NRG Oncology PREDICT-RT trial, they are giving ADT±apalutamide for 24 months to those men with high Decipher scores, or ADT for 12 or 24 months for those men with low Decipher scores.
clinicaltrials.gov/ct2/show...
Thx and yes, we don’t know. What would you do?
I'd try to get a Decipher test if insurance can be persuaded.
Ok
3 years ADT + 2 years Abiraterone...what's the source of that? I'm coming up on my 2 year anniversary following the STAMPEDE studies. I'm not loving ADT but if the results are that much better, I could stay on for another year. Thanks Tall_Allen!
Click on the link I provided above for the source. There is nothing in your profile, so IDK if it applies to you.
Thanks! I didn't catch the hyperlink on the first pass.
To Nusch,
Cured? What's that?
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 03/03/2023 8:48 PM EST
I use cured as a synonym for undetectable PSA without any treatment for more than five years. Everybody can make his own definitions, that’s just mine. Is this possible? Only God knows.
And He/She ain't telling....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 03/04/2023 12:05 PM EST
Sorry....I didn't realize that cured meant dying with it rather than from it.....(like all cancer, dying before those tiny mother fuckers wake up)..
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 03/04/2023 12:24 PM EST
Yes, that the goal. But I still want to reach 104 years. Because I’ve seen a 104 year old guy winning a 100 meter race in age group 100+. That I definitely want to experience as well.
I think you would get a total of 8 injections, 4 per year. After which your T will begin to recover. So 1/22, 4/22, 7/22,10/22,1/23,4/23, 7/23, 10/23
Nusch• in reply to
Thx! I was just thinking if I can skip the 10/2023 when it takes 6 months for my testosterone to recover.
• in reply toNusch
I suspect that the “2 years adt” means 2 years under active undisputed suppression.
Talk to your doc and see what they think.
In the end you get to pick.
6 months is pretty quick. I’m at 3 years off meds and just hit 310 for the first time. I still have my prostate and my psa jumped from .04 to .12 in 3 months. Doc saying that will happen. Next psa should be interesting. My group is calling 18 months the new 24 months of ADT. At the time I was glad to hear it but in the end we will see who is right.
I don't think it works like that otherwise I'd only had six shots and 6 years
I’m on Eligard rather than Lupron, but in 15 years of treatment, I only had two 1 year vacations - I know that that’s a hard nut to swallow for many people, but I’ll be 67 next week, and according to the nomographs back when I was diagnosed in 2007, I’d be dead at 2012. Well, I’m still here… So I’ll trade my lack of sexual abilities for the fact that I can breathe and eat! Your mileage may vary.
tdouds very good advice, I did hormone suppression for a little more than two years and then for reasons out of my control, I had Vacay for almost two years, my testosterone levels never fully recovered, not even for me to even think anything sexual. That vacation also made me go metastasized aggressively! Now back on Lupron and a bunch of other meds. I am still relatively asymptomatic, getting on with my life.
• in reply totdouds
Bravo tdouds ! 15 years is something! I too am lucky to still be here . It was never a rush to any vacation for me . After two yrs I chopped the boys and dropped the lupron shots . Then I continued Tak -700 stopping adrenal t just 8 months ago . I’ve got 3T and Psa<.1 for 8 yrs now . Whoo hoo . Many men start out wishing a vacation . I never did . A.though no libido was initially depressing to me it much better than end stage pc . I’ll never feel the t again . But going in for check ups and having no signs of pc is amazing . Imho 🙏
I was on monthly injections and took the last shot one month before my 18 months was up. My T stayed below < 12 for six weeks after the injection and then recovered pretty fast after that. So I would suggest taking your last 3-month shot, three months before your treatment period ends (24 month period?), unless you are sure it will stay at castrate levels six months out.
Yes it all depends on whether you count recovery time as part of being on ADT. If you remain <10 during that time I’d say it counts, but that obviously may be contradicted by your doctor.
One of the risks is you can’t know the trajectory of your T recovery.
hi, As with anyone who is on ADT for an extended period, recovery of testosterone is unreliable. With Lupron it will just take longer to find out your level of recovery. What your intention after you finish the 2 years? There is no magic period of time that can assure you of a longer vacation if that is what you want. You may want to consider Relugolix taking 1 pill per day takes your PSA down quickly & also gets out of you system quickly (just a few weeks). Down side is that it is an expensive drug depending on your prescription plan. I have found it has less side effects on me.
Good Luck
I got IMRT/VMAT to prostate bed and pelvic. SoC is that RT is accompanied by two year ADT. My PSA is undetectable, PSMA-Pet shows no mets. So I simply would like to give it a try, if I’m cured.
• in reply toNusch
Dear nusch! I’m not trying to be a Debbie Downer but if you were like I ,#4 there is no known cure medically for us . I dont know how many men I’ve seen here in six years that took a vaca and then their Psa jumped and they’re back in the fire again . No thank you . The pc hides . Sometimes for ten years if we are lucky . Keeping that Psa down for many years is just a start . If you are lucky ? Good luck !
Nusch• in reply to
I never had mets except pelvic lymph nodes. So there is a possibility that PC never left the pelvis. As I did RT to prostate bed and pelvis, I would like to find out if I’m cured.
• in reply toNusch
I too had two lymph nodes lit up . Pc never left the pelvis but it did leave the Prostate being metastatic pc . Cure is a big word . Undetectable is as good as it gets . Good luck Nusch!
youtube.com/watch?v=cX-4AC4...
Does this help? It seems the answer is that you can, as you PSA is below 0.1 (?), but should not because you want to be cured??😑
Does that make sense? Dont mind me. I am just a layman.
My personal opinion is we should take vacations as much as possible, as a test to see if we are cured, but only if we have no sign of metastases and undetectable PSA. And of course the doctor must agree. Simply test PSA quarterly looking for a rise over .2 and even as high as 4 before resuming ADT. That is my unprofessional opinion.
I can tell you that your psa guide levels are way off. My psa highest number was 4,2 and the tumor was out of the prostate against my rectum. Everybody’s cancer seems to be different. I’m at the very point where I’ve been off the drugs for 3 years and both T and psa are moving. Scans in April.
My highest PSA was 2.222, but except pelvic lymph node PC never went to bones or organs, not even lymph nodes outside pelvis. After first PSA my doctor didn’t give me too long, now I’m in the middle of year 6. So yes, this beast materializes differently in all of us. No glue why.
with our low psa levels and seriousness of cancer I’m wondering how they still say psa of 4 is still nothing to worry about.
My PSA never went over 1.1. Cancer everywhere in the sexual and urinary track except my balls, Mets in LN and bones.
Even when we’re similar, we’re all so different in terms of the extent of our disease and what treatments might work.
so why would anyone say 0 to 4 is a good psa?
Just my guess, but because for most men that are PCa free, it’s historically been the range of PSA that was recorded in lab tests as they were created over the years.
What’s really mind boggling is the recent belief by some in the medical community that PSA testing should not be done unless there’s some indication of PCa already. No more screening with it beside it leads to too many unnecessary biopsies.
I believe that our low-PSA cancers are fairly rare; we’re not a good sample set for arguing that PSA <4 isn’t a good number.
men apparently recover T quicker from the oral ORGOVYX® (relugolix) instead of Lupron. It is expensive on some insurance but might be an option to switch to.
I was on Lupron for 2 years. My last 3month dosage shot was in Oct 2017. That should
have covered me until January 2018. What I learned was that for some guys the dosage
lasts longer than 3 months. That might not be a bad thing, but you also should talk
to you doc about using the 1 month dosage shots. My T did come back, starting
about the 6th month after the 2 year period. T went up over the next 6 months.
So really it took almost a year to come back. I was 67 at the time. As usual, it's
different for each guy. Recovery of T is dependent on a lot of things.
what T level do you call that it’s back? I never knew what mine was before taking it down. Now back to 310 finally.
Under ADT I’m around 10, sometimes even lower. Six months after last lupron I’m around 100, after one year maximum last time was little about 30“.
My T before adt was around 325. 12-15 months after stopping adt it
returned to 275-300. Luckily I had a T test before, and had a baseline T
level. I run a PC support group and encourage all my guys who are going
on adt to get a baseline. Without a baseline, the question of "did it return"
is meaningless. It confounds me that men generally don't get that advice
from their docs.
in my case I went to the urologist for a painful testicle where they found the tumor. I let them do the biopsy in their office. Big mistake. He missed anything that had cancer calling it a nodule. Psa 1.4 at the age of 65 . No problem went back to work. 1 year later psa 4.2. Tumor out of prostate and here we go. Delivered first shot of lupron in June of 2018. Mine was probably low at that time so the dr said.
(73 y/o). Baseline testosterone before treatment was 456. . I had one 4-month Eligard shot. It dropped my testosterone level to 8 about 6 weeks after the injection. At 5 months after the injection my testosterone was <3. At 7 months after the injection my testosterone had recovered to 337. Urologist who administered the injection said he was “surprised” by the quick recovery. From reading the experiences of others, with ADT, there is no telling when the effects will wear off.
I just finished 2 years of Eligard. 8 shots total. No spread to lymph nodes or vas deferens. Nothing in the PET scan. PSA has been undetectable since treatment started. Doc says NED.
No Evidence of Disease.
Luv the Ned!
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