PCRI just posted a new video titled 'New study validates intermittent hormone therapy'. So, just search 'PCRI' in YouTube and that video will pop up.
Certain individuals on this site feel strongly against curtailing the duration of hormone therapy from the standard 2 to 3 years or even longer. I urge you to watch the video and make your own decision.
No one should be making consequential decisions like that based on youtube videos. There is much to consider:
prostatecancer.news/2023/04...
I trust Dr Scholz as he's a qualified oncologist with 30+ years experience specialising in the treatment of prostate cancer. You implied in response to one of my posts that he is doing it for financial gain. I disagree...I believe he is sincere and genuinely wants to empower prostate cancer survivors with the knowledge to deal with this dreaded disease.
Intermittent hormone therapy is not something new...it is a treatment that has been around for more 20 years. It has been found to be equally effective compared to continuous ADT and with better QoL.
I didn't criticize his knowledge, although I know of many oncologists who are more knowledgable. And I didn't listen to his video, so I have no idea what he said was established truth or just his opinion. What I criticized is patients like you getting info from any youtube videos or any social media and thinking you are thereby well-informed. It's just lazy. You deserve better.
It's common sense that the reliability of information in any videos on YouTube depends on the qualifications of the persons making the videos...Dr Scholz is probably more knowledgeable about prostate cancer than the sum total of all posters on HU.
I do not rely just on PCRI for information on prostate cancer. I've tried to acquire as much knowledge as possible from a wide variety of sources.
You should listen closely to the video I alluded to and point out what you think are erroneous...
Again, my comment is about misusing the medium by patients like yourself, not about Dr Scholz. Your comment above: " [iADT] has been found to be equally effective compared to continuous ADT and with better QoL" demonstrates how misinformed you are. Whether your misinformation comes from youtube videos, I can't say. iADT is a complex subject that can't be adequately addressed by anybody in a short youtube video. Perhaps read the article I linked to get better informed.
The above quote is taken from the video. I have read the article. It's written by researchers...men who are not infallible.Not all researchers are in agreement on the best treatment for prostate cancer. There are too many variables. Even regarding iADT, it's not suitable for everyone.
I urge everyone suffering the side effects of ADT to do their own research and decide for themselves.
"The above quote is taken from the video. " Then the video is wrong. Thanks for making my point that patients should not get info from youtube videos.
Watch the whole video before passing judgement.
I never watch videos-- only peer-reviewed journal articles. Try it - it's the best hedge against being duped by social media.
But they should trust a random dude on the internet who isn't medically trained, doesn't see patients, and writes a blog? Hmmmm...
My articles are only a compendium of peer-reviewed journal articles. Unlike youtube videos, I don't ask patients to trust me, or market myself to patients for profit. My goal is to empower patients with verified information. Those who ignore medical science, do so at their peril.
Smart men here will do further research on the youtube topic, and then discuss a certain topic with an experienced specialist.
Smart men will ignore youtube videos and all information from social media.
Really. Listening to talks from folks like Kishan is a waste of time???? Anything on HU is a waste of time?
On youtube, as I said. There is great info in peer-reviewed journals. If anyone provides opinions on youtube or social media, it is a waste of time. If it is their anecdotal experience, one can take that for it's worth. Why not get verifiable info?
Because ...eg Scholz discusses IADT, and the viewer had not thought much about that possibility......obvious for most here that watching that video was not waste of time!!! AS I said, then that viewer moves to looking for confirmatory studies.
You have your way of doing things......many here have other approaches, and perhaps what is the point of trying to denigrate other approaches to info gathering. Sometimes a video is just a break from tedious reading eh???
I generally respect and appreciate your worldview Allen! But I think there is a role for social media - HealthUnlocked as an example - as a way that medical knowledge finds its way too people with cancer and different diseases. The fact that social media is often filled with bad information just means one has to be careful.
How does one "be careful"? The only way to "be careful" is to check sources. Most social media do not include sources. Anyone can say anything they want with impunity. If someone trusts the speaker (because it sounds sciency or he holds conventions for patients), one believes everything they say.
"This research led to another study published in July 2021 in the Journal of the National Cancer Institute. Data showed 33% of the most popular articles on social media about cancer treatment contain misinformation. In addition, 77% of those articles contained information that could negatively impact the quality of a patient’s treatment and chances for survival. The study also showed that articles containing misinformation garner more attention and engagement than articles with evidence based information."
You seem to be informed for a layperson (I assume you aren't a physician). It is clear that prostate cancer is a very complex disease and the Imaging and treatment options are evolving at a rapid rate. As a physician who practiced medicine for 40 years, I know how difficult it can be to understand the totality of diseases and treatments without being a specialist in that particular field.
That is why I do not believe anyone should give medical advise to others on this, or other, forums. Each person's disease and presentation is unique. Their co morbidities and tolerance for side effects are different. The importance of QOL over potentially additional years of survival are different.
I have an extremely experienced MO at Johns Hopkins who is the Director of the Brady Urological Research Center at Hopkins. He has been a MO specializing in prostate cancer for 30 years. He has authored or co-authored over 500 articles on the Imaging, diagnosis and treatment of prostate cancer including molecular biology and genetics. He is extensively involved in research. I say all of this to state he is highly respected in the field and on the cutting edge of treatment.
I presented to him and his team a year and a half ago with oligometastatic disease and a PSA rapid doubling time. He immediately started triplet therapy and recommended radiation to my pelvis and limited metastatic site (previously radiated T8 and new pelvic node). My PSA rapidly became undetectable and has remained so. His recommendation was to discontinue Lupron after one year and follow PSA/T quarterly. He specifically recommended against indefinite continuation of ADT and Darolutamide. I have followed his recommendation because no matter how many peer reviewed articles I read (even with my extensive medical background) I will never know even a fraction of what he does and cannot collate/process all of the information needed to decide my treatment.
Congratulations on your successful therapy!
"He specifically recommended against indefinite continuation of ADT and Darolutamide. I have followed his recommendation because no matter how many peer reviewed articles I read (even with my extensive medical background) I will never know even a fraction of what he does and cannot collate/process all of the information needed to decide my treatment"
What is important for the patient to understand is just which recommendations have evidence to back them up, and which are his professional judgment. Some patients, like you, just want a respected paternalistic doctor to tell them what to do. Others, like me, want shared decision-making. I am able to assess options for myself if evidence-based therapy and judgment are made clear. To me, that is the doctor's job.
There is no evidence that discontinuation of ADT and darolutamide will not harm you. The evidence from ARASENS is only for lifelong treatment. If you need a vacation and understand the risks, that is your decision.
My preference is to defer to the professional judgement of an experienced, knowledgeable specialist when the decisions are complex . Decision making is an amalgamation of knowledge accumulated, experience and professional judgement. There is an art to it. Johns Hopkins actually has their own database of patients undergoing treatment and their decisions are partially based on that information. My treatment is shared decision-making and not "paternalistic". However, when I ask the 50K question "Of the options given, what is your professional recommendation?", I would be foolish to say, "No, give me door #3". In the words of Osler "A physician who treats himself has a fool for a patient". That may go doubly so for a layman.
Then you want a doctor to tell you what to do and you always follow his recommendation- that defines paternalistic decision making.
I have never met an oncologist, and I've met many, who doesn't at least try shared decision making. I've found doctors prefer it. It is often the patient, who doesn't want to take responsibility, that forces the doctor to decide. In my experience, patients often try to "trick" their doctors by saying things like "if I were your father, what would you tell me to do?" A doctor who genuinely practices shared decision making will deflect the question by asking, "that depends on things like how important X is to you, and what can I tell you about the risks and benefits that will help you decide?"
Among the top doctors, they are thrilled to discuss the research on the subject, and enjoy a respectful discussion of the major trials. I always try to send a link in advance of the visit to let them know it will be a subject for discussion.
Many patients, like yourself, do not really want to be empowered. They do not want to be responsible for making the "wrong" decision - and who can blame them?
You do not know me and you do not know my interactions with my physicians. So, your comments are off base. My MO is very aware of what is important to me and QOL vs tolerance of SE vs absolute survival. He offers choices based upon that information. So far, his professional recommendations are in lock step with my wishes.
I have encountered a few laymen on these forums who believe they know as much about prostate cancer and its treatment because as the real professionals they have "researched" and read articles. They don't. And if they do, it's time to find a new specialist.
I can only go by what you wrote. I'm glad you practice shared decision making.
Peace and good luck to you.
OMG "I always try to send a link in advance of the visit to let them know it will be a subject for discussion"!!!I have three major doctor appointments coming up sort of on my 2-year diagnosis anniversary. I'm comparatively well informed but I'm still slightly intimidated by "Doctors". I'm going to send a paper ahead now!
nor from posters on this website.
How do you know that other oncologists are more knowledgeable? I'm not disagreeing; I'm wondering what criteria you use to make that type of judgement.
The top doctors are invited to present at the important conferences and are usually the lead investigators of landmark clinical trials. They are highly revered by their colleagues.
They are often lead authors on published studies in high-profile journals.
For example, put this into the search bar on pubmed: Sartor O[author] and "prostate cancer" It comes up with 378 papers between 1992 and the present. Many are landmark studies.
Now, put this into the search bar: Scholz[author} and "prostate cancer" It comes up with 27 papers since 1997. Few are landmark studies.
Sartor uses BAT, doesn't he? Seems like I corresponded with him a while back.
Couldn't you analyze actual patient outcomes for each doctor? I assume that info is readily available. Papers and conferences seems very indirect to patient outcomes.
Why did you not view the video before condemning it. I did not see anything that would encourage people to pursue invalid treatments. The main point is that intermittent androgen deprivation therapy has been used for many years and that the results are similar to continuous treatment (evaluation of this is highly complex and too much to be discussed in this short letter). And to discuss the possibility with your doctor! However the quality of life can be considerably greater something that clinical trials pay no attention to. Yes much of the "data" regarding the efficacy of BAT is not from clinical trials. There have been several clinical trials some of which report similar time to progression and other markers but none considers the quality of life. In addition I found two (probably among many) trials sponsored by pharmaceutical companies that were completed but no results published. This is a very well known way that information that runs contrary to the goal of the sponsoring party is suppressed. Why does this study show no results after 9 years, maybe because the results were not favorable and the study was sponsored by a pharmaceutical company? clinicaltrials.gov/study/NC...
I tried my best to digest the following linked by TA. Cause of death is considered and generally causes of death other than the disease being studied are ruled out and not considered in comparing the efficacy of the treatment. That makes sense however this is a one way bias. It does not consider the fact that those who were ruled out due to non cancer deaths may have died from side effects of the treatment itselft. ADT is known to have several potentially lethal side effects and these are not considered in a study that is only comparing the efficacy of the drug on the disease in study.
ascopubs.org/doi/10.1200/JC...
Out "evidence based medicine" is highly corruptible. Clinical trials are often sponsored by entities that have significant benefit from results that promote their products or services. And when the results do not favor their interest the results are not published.
bmj.com/content/376/bmj.o70...
Several drugs have been considered for off label use in the treatment of cancer. Most of these never reach clinical trials possibly because sponsors do not see a potential profit. If ivermectin is proven to help treat cancer in any way how is a pharmaceutical company going to make any money selling it for $75 for a 200 ml bottle of 1% solution which could be used for a year in the doses suggested by various (non clinical trial) studies. And is the safety and side effects of various drugs compared in a side effects vs benefit comparison? No it is just whether the drugs gets good results (and the bar for statistically significant benefit over placebo is often very low) that are approved for treatment without any regard for significant side effects for which the acceptance level is often quite high.
This article suggests several drugs that can be repurposed for cancer treatment and goes into considerable detail about mechanisms of action that may make them useful. How many of these have made it to clinical trials? Why consider old drugs that can be made as generics for a fraction of the cost of fancy new patented drugs.
ncbi.nlm.nih.gov/pmc/articl...
Would you rather I viewed a youtube video or that I spent my time keeping up with the science and answering patient questions?
1. It was published. I discussed the ICELAND trial in my article (Section I4).
2. That is why Phase 3 trials are randomized.
3. More silly conspiracy theories.
I don't think you need to watch everything that someone links but you generally condemned all such items on the internet without seeing that this particular one was pretty tame and not dangerous in presentation of information or suggestions. Two points, consider QOL and ask your doctor. And I do value the contributions of "science" but also know how corruptible and misleading it can be. When there are serious money interests anything is possible. I trust big pharma about as much as I trust most politicians.
I'm saying a video is not a reliable source of information - any video.
I agree somewhat with qualifications. A video is just a suggestion. The information it contains can be anything from correct to misinformed to genuinely and intentionally misleading for any number of purposes. I think that this particular video was on the informative side of the spectrum. I have read and found suggestions about BAT in a number of sources and I did what this video suggested, asked my doctors. They all felt that BAT was not really appropriate for me and I believed them. For others it might be worth consulting their doctors and getting an opinion especially for those who are experiencing serious QOL issues from ADT. My side effects have largely subsided and or I just accept them. I am also very suspicious of alternative treatments so, in my opinion, carefully weight the risks. I would not replace standard treatment with an alternative without a lot of confidence in what it could do. And that would require a lot fo convincing evidence not just some pretty face on a youtube. I am taking ivermectin without any hard evidence that it will help but also with very strong evidence that it is not dangerous and it is not replacing conventional treatment. I also take a few supplements and might add more again which are very likely to be harmless and possibly beneficial. I think we should be able to share this information the forum and leave it to the individual to decide what to believe.
I find your comments and referral papers to have been incredibly helpful to me. I have also found the PCRI website information to be helpful but certainly not a basis for decision making. Please continue with your great work and commentary. After IMRT and BT I was stopped ADT but had to ask why? I was told that the research supported discontinuation after 12 months. There was no discussion but I could figure out by reading the literature that at my age 72 I fit within a predicted longevity profile post treatment. The same goes for the PSA bounce, I had to find the papers discussing trajectories. However, there was never a discussion of treatment options. our BC Cancer Agency is very prescriptive and informative but you have to infer where you are on the spectrum of the disease. So, I remain informed to the extent possible but would dearly have appreciated an adult conversation in my darkest hours. Thank you again for what you do. I am a little saddened by the tone of some of the comments. The pen is indeed mightier than the sword. Kind regards.
It seems it's not clickable. You have to copy and paste in Google search bar.
My husband was diagnosed in 2001, had an RP & multiple positive nodes. He did 9 months of Lupron and that’s it until 2019 when he had a few lymph nodes zapped with a cyber knife. He went back on HT in 2021. He had 20 years of recovered testosterone. For us it was the right decision.
Thank you for sharing your husband's experience with iADT. That's exactly what Dr Scholz described in the video I referred to.Besides immediate side effects of fatigue, brain fog, depression, loss of libido, hot flashes, etc. there are longer term complications such as cardiovascular disease, diabetes, fractures (due to loss of bone mass) from ADT.
Everyone on ADT should be informed about the benefits of iADT.
and he definitely discusses that such a decision makes sense for some, but certainly not all,,,,of course!!!!!!!!!!!!!!!!!!!!!! I am seeing more and more Docs emphasizing the need to do a better job of segregating men into different groups when it comes to duration with RT or intermittent ADT. I have never asked, but I wonder if PCRI provides links to any the studies supporting what Scholz discusses? I noted that he is a BIG believer in the value of PSMA PET scans.
What were your husband's initial diagnosis details? I think that would make a huge difference in this discussion.
The details are in her bio.
I didn't see those details. I'll look again but didn't see details of initial diagnosis- Gleason etc.
PSA 11, Gleason 3+4 & 4+3, 59yo, athletic. Discovered elevated PSA during an insurance exam. RP was the best option in 2001. After identifying lymph node mets, he was referred to a wonderful oncologist, Celestia Higano, MD who proposed iADT. The Lupron had many side effects, fatigue, hot flashes, ED (for anyone who is interested, the most important sex organ is between the ears, ED never affected our sex life) and eventually, atrial fibrillation requiring ablation. At the time, cardiac effects were not acknowledged as side effect of ADT. PSA after 9 months of Lupron & Casodex dropped to <0.001 and remained for 17 years. It rose very slowly, At this point, with widespread bony & lymph node mets, castrate resistant, failed Zofigo & probably limited success with Pluvicto (will know more about that in a couple of weeks), it seems likely that PCa will be his cause of death, but I wouldn’t trade the 20 years of relative normalcy for anything. I agree that not everyone would benefit from our approach, but for those who would, it’s worth considering. Good luck to you.
Thank you for your info........would you please tell us your dear Husband's age?
Good Luck, Good Health and Good Humor.
j-o-h-n
Currently 81.
Thank you........ may he make it for another 20 to 101.....
Good Luck, Good Health and Good Humor.
j-o-h-n
After an initial six month eligard shot I've both off ADT for six years. Very nice quality of life, no hot flashes. I was told that I needed 2 years of ADT off the bat for recommended radiation treatment. I chose HIFU instead. That surgeon saw no need for further ADT treatment until scans or tests indicated otherwise. Oh, and the other consideration? Why would I wait two years to see if the surgery had been effective?
I think your last line sums it up very well. We all have the same disease, but that is where the similarity ends. Age, Qol, prognosis, reaction to treatment, side effects etc. all play a part in the decision process. Some guys are interested in quality of life, others are more focused on quantity. Speaking for myself, the side effects of 3 years on ADT (and counting) hasn’t tempted me to roll the dice. It hasn’t been a big deal so far. Having said that, I’m pushing 73 so am naturally slowing down anyway. If I were 59 like your husband was, I might choose a different path. I’m glad things worked out so well for so long for your husband. Warmest regards.
Have you been monitoring tour bone density with DXA scans? I'd be interested in your results affter prolonged ADT. I am already on the high side of osteopenic, so bone loss is a HUGE concern with ADT....of course so is bone fracture caused by metastasis!! No win situation?
I have. They send me for one every year. I have osteopenia but no idea how long that has been because I never had a bone density scan until I was diagnosed. I’ve been told I’m small boned which I think makes the scans harder to interpret. My 10 year risk for a major fracture has remained steady at less than 10% but my lowest T score has declined a bit. I was worried until I read an article by an osteoporosis specialist in the U S. She had 300 of her patients do a scan and then walk around the room and be scanned again. Same machine, same tech some different results. Her bottom line was don’t sweat small changes. As for ADT or strong bones, sometimes your choice is the tiger or the lion. Your MO can talk to you about bone building drugs. My MO isn’t concerned at this point and I’m in no hurry to start on something else. If you keep doing the scans you probably want to go to the same lab and hopefully the same machine. Apparently positioning of the scan subject is really important too in order to get the best accuracy. In a perfect world, the same tech and same person reading the scan would probably be good too but I’ve never had that. Good luck!
My husband was 49 at diagnosis and has been on ADT for almost 7 years. Agree- each patient and disease is so unique. He has had great quality of life. He doesn't feel he's chosen treatment over quality of life. We feel fortunate that the studies just completed at his time of diagnosis showed the treatment at the beginning matters for long term results in his case. That's what makes it all tricky- individuals are different and their disease is the same. Working out with weights has helped my husband feel like he's taking care of his bones.
I am currently trying intermittent hormone therapy (iADT). I was on Zoladex for 9 months after being diagnosed with recurrent PC in Dec 2022. I had a RP in 2016. I stopped the Zoladex injection in Dec 2023. I am taking a break until my PSA test in March. My QOL during this vacation is much better than before. The coming PSA test will tell whether intermittent therapy has had any benefit. I may extend the vacation if my PSA remains at the previous level of .02
Thank you for sharing your experience on iADT. According to Dr Scholz, you need to resume ADT only if your PSA rise to 2 or 3. You might consider getting a PSMA PET scan and if spots of met are found to radiate them.
I read TA‘s postings and watch PCRI and Dr. Scholz videos. I also read studies on my own and try to learn. From my point of view we aren’t controversial, PC is just so individual - you can read my bio, if you want. You never know, which surprise is waiting for you around the next corner. And regarding studies there’s one challenge: we don’t have long term studies based an PSMA Pet scans . And metastases are, according to my knowledge, one of the important trigger regarding iADT or cADT. Have the participants in the studies been free of metastases or didn’t we just not see them? Even with PSMA Pet scans we are closer but not 100%. So I decided, in an unanimous decison with all my doctors, to stay on ADT for 24 months and just got off recently. No glue, what future have as next surprise. To fight side effects of ADT I decided for plant based diet, daily running, weight lifting and gymnastics every second day and meditation. This package helped me a lot, not only to reduce common side effects but also long time side effect on cardiovascular system. I wish every warrior here a great weekend and a successful fight against our all enemy.
There is a movement by some very good doctors beyond Sholz to de-escalate ADT use to help patients QOL.
My .$02 centers around the use of ADT as part of curative therapy vs lifelong use of it for chronic disease. Cutting short prescribed courses as part of attempt to cure can lead to losing one’s best chance (always the first) at total eradication. A huge risk if it doesn’t work, since lifelong ADT will surely follow.
Yet for men already on it lifelong, carefully monitored breaks (holidays) can allow testosterone to return for significant durations, with return to ADT at agreed-upon points of PSA rise.
Yes survival numbers are less for intermittent therapy, but often by very small amounts. Plus the disease is so heterogeneous.
It’s not uncommon for some men to feel that life is simply not worth living on ADT. Therefore in many cases the patient may feel that despite the risks, their QOL is so much better overall on intermittent that the risks are QUITE worth it for them.
At best we may be talking apples and oranges. As Dr. Scholz and others have painstakingly point out repeatedly that because of the nature of prostate cancer, any study may not yield result for many years. At the same time, science is making rapid progress. That is why we should not dwelt on old studies. It will result in much confusion if not unnecessary anxiety, if used inappropriately.
For example, because of increased sensitive of scanning, the old definition of 'cure' and 'remission' may lead to much confusion. As Dr. Scholz says, it is nothing short of a revolution.
Even as we speak, radiotherapy has has gone from bad external beam, to implant to liquid injectable radiotherapy with hardly any side effect. But we are already going beyond that. We are now working on both detection and cure at the same time in the same radioactive medicine.
So you are perfectly right. At the end of the day, this is website for sharing experience ONLY. If there is any, NOT FOR BETTER UNDERSTANDING OF THE DISEASE OR THE TREATMENT. If in doubt, we should seek the second opinion of a well qualified professional. It might cost a few dollars. But as we like to say in NY, free advise is as good as it's cost. That is nothing.
Dont mind me. I am jut another layman trying to make some sense of the whole thing.
Wait a moment......you say " radiotherapy has has gone from bad external beam, to implant to liquid injectable radiotherapy with hardly any side effect " Are you saying that IGRT for initial PSA-detected PCa is now yesterday's treatment? And X has taken its place? Please educate us!!!! I may need some new Docs!!!
You now have more options. Some of the older studies which rely on fewer options may be subject to more professional intepretation.
so, what are the better alternatives to beam IMRT/IGRT prostate radiation for newly diagnosed men? You didn't answer my question with your reply?
I did not, nor should I. I was merely commenting on the possible pitfal of reading old study paper without the help of medical professionals. That is all.
As for what kind of treatment you should have, you should definitely consult your medical team. Sorry but they are the experts. They are licensed to practise medicine. That is just common sense. Of course, at the end of the day, it is your wellbeing at risk, You and you alone is responsible for that, and those unlicensed individuals giving professional opinion.
Dont mind me. I am just another layman trying to make some sense of the whole thing.
I quote what you said " Even as we speak, radiotherapy has has gone from bad external beam, to implant to liquid injectable radiotherapy with hardly any side effect. " I am simply asking you to name those treatments that have now replaced " bad external beam" ????? Iwould like to know so I can search for Docs who provide those superior treatments!!!
We are talking at cross purposes. I was just giving you an example of how science had progressed so that dwelling on some studies years ago may not be beneficial. Let me say it again. I am not a medical professional. I DO NOT MAKE RECOMMENDATIONS with regard to treatment, doctors or anything that is beyond my training and knowledge. That is about everything involving prostate or any cancer, or for that matter any illness.
Let me make it clear. What you need is expert medical advise. You should ask you primary care or GP.
Dont mind me. I am another layman trying to make some sense of the whole business.
So, in the future, please don't make such plainly -understood but false statements about PCa treatments. Maybe you can explain why you made such a bogus statement??????
Sorry I have no idea what you are talking about. I have said all I can say. May be you want a fight with a medical professional or your own doctor that is your business. I have neither the time nor the interest in your war. As always, please read my disclaimer below before making any wild accusations.
Dont mind me. I am just another layman trying to make some sense of the whole thing.
Ah, for the THIRD time, here is what you declared in a previous reply....quoting YOU......
" Even as we speak, radiotherapy has has gone from bad external beam, to implant to liquid injectable radiotherapy with hardly any side effect. "
I asked you for the source of your statement, and you will not provide any source for what seems to most of us here a BOGUS declaration...... I don't wish to fight with anyone, but will call out statements that are VERY fact-challenged IMO.
You are being reported for harrassment. You can go to any doctor and ask about old radiotherapy that destroys other tissues. That is why they had Spaceoar, then proton etc.I call it bad radio.That is my privilege. Others do too. I can call any treatment that has bad side effect bad. Chemo, surgery. That is subjective. You are making an issue out of nothing, without any ground whatever. As far as I am concerned I have no wish to waste any more of my time on you or your narrow minded aggressive and unpleasant posts. Good day.
Dont mind me. I am just another layman trying to make some sense of the whole thing.
See how easy that was....finally actually clarifying what the h...... you were talking about !!! Hopefully whoever you tattled to will read the full exhange , and see that all I did was continue to ask you to clarify waht you menat by that "bad radio" comment!!!!
Have a good day sir!!!
Did he mention the name of the study, and/or provide a link?
Yes, the study cited by Dr Scholz was published in the prestigious New England Journal of Medicine. Watch the video I referred to in my original post.
Here is a study re ADT duration with RT. I think Scholz has discussed that topic either on your referenced video, or a separate video.
urotoday.com/conference-hig...
Using an endpoint of overall survival yields different duration than other endpoints cited in the article/study. I believe study included maybe as many as 10,000 men who had undergone RT for intermediate and high risk PCA. What I found fantasizing was something that interests many Docs....the benefit of the 1st 12 months of RT when compared to the marginal benefit as the duration is expended! At least to me, this was unsurprising!
The highly esteemed Dr. Kishan was a principal contributor to this study.
Dr. Zaorsky concluded his presentation with the following take home messages:
The optimal ADT duration in regards to overall survival is ~19 months when accounting for the majority of non-compliance data available with long-term ADT
Optimal duration for cancer-specific endpoints (BCR, PCSM) is likely indefinite
Longer durations of ADT appear to worsen other-cause mortality
This analysis does not account for quality of life or baseline comorbidity status in determining optimal duration
The absolute incremental benefit varies by baseline risk
Optimal risk models should be utilized to better estimate absolute risk and potential benefit of various durations of ADT (STAR-CAP, Clinico-Genomic Risk Groups, ArteraAI, etc.)
Based on my best estimate of benefit vs. risk of other issues associated with ADT use. I decided on 22 months post RT and 7 months pre RT (which lasted one month) based on a prostate that was 5x normal at time of DX.
Only in hind site will I know if I made the right decision. My MO and RO were OK with me quitting earlier.
I am very encouraged by studies that show a PSA that is undetectable <0.01 and a Testosterone less than <7, one year after RT, show a good prognosis for 10-15 years of life. Mine were and are both. My 1st vacation starts this month.
Experiment of one.
Yes, unfortunately we /Docs never know the actual impact of any certain protocol vs some other optional protocol not followed? I'm almost as concerned about the negative impact of the treatment as I am about PCa death....just me. I'm already high side osteopenic, have had several undiagnosed fainting episodes, VERY troublesome gas buildup which may make accurate RT very difficult, it seems that the gas buildup causes delay in urinating, etc. Both PSMA PETS negative .
I will schedule another consult with a 2nd Kaiser RO , solely to address my concerns. Kaiser does not use fiducials with CBCT for the 28 session RT protocol....only when SBRT is used. Anyway, I ended up with a catheter after my 18 core biopsy, so inserting fiducials seemed risky too????
That is great to see your results Scout!!!! Have missed your more frequent posts during past times!!!
What have been your most troublesome SEs since your RT and ADT?
Thanks for the kind words Maley. By far it was the emotional swings and emotional sensitivity, neither of which I have experienced as an adult prior to ADT. Fortunately I have an understanding partner who was easily able to recognize when I became "hormonal" as she had a rough time during menopause. I feel very fortunate that my response to the drugs was as mild and successful as it was. I choose to end ADT because I was concerned that the emotional swings if continued could damage my most important relationships.
Yes, I remeber presentation from a U Michigan prof/RO/brachy specialist. A 78 yr old man and wife of 50 years came in for followup after successful RT /IGRT + ADT. They concluded the vist, and the Doc was so pleased with the good results for this man.The husband left the room before the wife, She looked at the Docs and said something like " Doc, we didn't discuss one problem. For me, this has been terrible. For 50 years, my husband has been the most wonderful, caring, attentive man. Now, since this treatment, he is a different man I don't know!! No more kisses, touches, friendly chatter, etc. For 40 years he and his buddies have gone to AZ evry winter for an annual winter golfing spree. This year, he skipped it. I don't know what to do? "
The Doc said he was startled by the depth of this woman's despair and how ADT had almost destroyed that marriage. He used this story as a way to motivate other Docs who were in attendance that day to offer brachy boost with SHORT ADT and not just IGRT with LONG ADT ....not just for the apparent better PCa results, but just as importantly, for a reduction in the damage caused by ADT.
I hope your T is recovering quickly !!! Did you discuss or use the "patch" with the hope of mitigating the impact of ADT? Did your adt use result in a reduction in bone density per DXA scans? I know you maintained a vogorous workout schedule thruout the ordeal, right? I've got the walking down, but procrastinate on the rsistance exercise !!!
I did have a DEXA scan when I started ADT have not had a follow up. My guess any bone loss is minimal due to resistance training, I am the same weight as when I was DX 175# and 6' tall so relatively fit for a 76 year old.
Lucky you....midriff bulge still a problem for me.....I'll start the resistance exercise tomorrow????????? Long talk with Kaiser RO advice nurse today.....one high risk 4+5 guy here in Portland was sent to Kaiser brachy guy in NoCal for his brachy boost.....apparently Kaiser believes, overall, that the increased risk of urinary problems with brachy isn't worth any potential benefit generally....yet for at leastthis one guy, he was offered the NoCal brachy option....guess they didn't want to cover the bill for some non-Kaiser brachy Doc here in Portland? One specific study is usually cited as the justification for doing brachy boost......but I did find other studies where there was no such conclusion.
was the DEXA scan result "normal" density?
normal/ slight osteopenia
thank you.....I was high end osteopenia.....many hip fractures in my family!!!! SO a real concern when contemplatingADT.
The PCRI video just discusses iADT, and mentions a new study in the NEJM. I could only find this study there, from ten years ago, which is not encouraging:
"Intermittent versus Continuous Androgen Deprivation in Prostate Cancer: ... we cannot rule out a 20% greater risk of death with intermittent therapy than with continuous therapy, but too few events occurred to rule out significant inferiority of intermittent therapy. Intermittent therapy resulted in small improvements in quality of life." nejm.org/doi/full/10.1056/N...
My MO has had me on intermittent therapy for the past 3 years and fully supports it. He has showed me “written” studies that show the outcome is no worse than continuous ADT, With the caveat that one needs to strictly adhere to the protocol. Meaning go back on treatment when PSA returns to the pre-acknowledged level….in my case, 2.0. This usually gives me 3-4 months off. Although last vacation lasted 5 months.
I believe everyone needs to do their own research and closely work with your MO.
Has your T recovered sufficiently during vacations, and thus substantial side effect reduction?
it has every time I go on vaca…I’m guessing I just got lucky otherwise I likely wouldn’t be getting any benefit.
Some people look at a half a glass of water and say it's half full, others say it's half empty. George Carlin's quote was: "I see a glass that's twice as big as it needs to be".
Good Luck, Good Health and Good Humor.
j-o-h-n
If a YouTube video is transcribed into a blog or a blog is AI TTS onto YouTube, is the validity, or lack thereof, of the information impacted? Given that the death rate from this disease is rising, as is the number of men on ADT, and now we have increasing calls for active surveillance as well as ADT vacations, the biggest challenge with this beast may be how each of us navigate all the disparate information to make our decisions.
when I looked up the age-adjusted death rate, it has fallen from much higher numbers 10-15 yrs ago !!! Perhaps a slight uptick recently ?, but overall 19ish for a number of years now. There is debate about the reasons for this.....not unanimous that early detection is the main reason?
And, whatever decisions are made, unlikely a man will ever actually know the "rightness" of that decision for his case.
The video refers to the EMBARK trial with Enzalutamide. This is the article in the New England Journal of Medicine, published last year: nejm.org/doi/full/10.1056/N...
An overview can be found here: urotoday.com/video-lectures...
The trial used intermittent ADT.
Wow this has stirred up a hornet's nest. I completely hold with Tall_Allen.
It's super important to distinguish between intermittent ADT on one hand, for people who have non-metastatic prostate cancer - I didn't bother to watch the video but I think that is what we're dealing with here - and on the other hand sophisticated intermittent ADT for the purpose of retarding prostate cancer evolution to resistance.
This forum is for people where the cancer has metastasized beyond the prostate. Tell me I'm wrong but I think the topic here does not apply to situations of metastasis.
Note Added Later: In fact this whole discussion belongs on the other prostate cancer forum. Time and again I see people thinking that metastatic prostate cancer and non-metastastic prostate cancer are the same thing. In terms of therapy and life expectancy they are not. And all this discussion here is irrelevant and misleading for those facing metastatic prostate cancer. The discussion legitimizes an irrelevant train of thought that is a waste of time, confusing and leading in bad directions.
I'm metastatic. I'm 2 months into my first "vacation". I have found this thread particularly useful. If it wasn't on this forum I would not have seen it. 🤷
Pay attention to what Tall Allen said. I'm sure you're enjoying your vacation but you don't know what's happening under the hood. But if we were cruel we could make a pretty good bet.
In my comment above I referenced as sort of intermittent therapy for the purpose of pushing off therapy resistance. This is a completely different thing than what all these people are talking about here. You need to know the difference. And then ask yourself is that the reason why you are doing intermittent.
An illuminating video. Thanks for the reference. I'd already planned to talk to my RO about IHT on Monday. She was the person who suggested a shorter-term ADT option to begin with. I am a Gleason 7, 4+3 unfavorable with mets to nearby LNs, PSA 16 as of Feb 12th. I'll see how the PSA is in 6-9 months.
Intermittent lupron therapy
New to hormone therapy
Intermittent Androgen Deprivation Therapy
Addition of Metastasis-Directed Therapy to Intermittent Hormone Therapy for Oligometastatic PC. The EXTEND Phase 2 Randomized Clinical Trial
going off hormone therapy
