Born in 1947. As a1969 college graduation present, complements of a low draft number, I served a tour in Vietnam, on river patrol duty. I was surrounded by defoliated trees due to the use of Agent Orange and I imagine I drank a lot of AO contaminated water. Fast forward to 2012 to discover I had prostate cancer that had been missed for 5 years (despite annual PSA"s). I had a Gleason score of 4+5 and a PSA of 6. The surgeon said that the cancer had pierced the prostate capsule and proceeded to remove 22 lymph nodes--none of which were cancerous. I thought I had beat it until in 2020 my PSA started to inch up from its nadir point of 0. Mayo said not to worry. Then it reached 0.1 and Mayo again said to do nothing until it reached 0.2. It did and then, because at 0.2 it was able to be imaged I was officially diagnosed with oligometastatic cancer. Despite the fact that I should have understood I had a recurrence the minute my cancer inched up, I took Mayo literally and didn't understand that their advice was related to be able to vision it to diagnose it--not with regard to whether I had a recurrence. I wish I had started my metabolic approach to cancer a year earlier--the smaller the cancer the easier it might have been to block. However, I did my homework on the many ramifications of ADT, especially with a low PSA, and chose to approach the cancer metabolically, even though my doubling time was under 3 months. Focusing in on the mitochondria (powerhouses of the cell) and the fact that cancer cells often have malfunctioning mitochondria, I have been on a course of off label drugs and supplements to attack the many different pathways in the oxidative phosphorylation (energy yielding) of the cancer cells. (See Jane McClelland's How to Starve Cancer) Although I did succeed in slowing down the doubling time, I have not been able to consistently drive down the PSA---overall it has gone the other way after a little over two years my PSA is 2.5. Due for another PSMA at the end of July and will likely need to make some decisions predicated on this and previous scans. Would like to travel overseas for Lutetium 177 treatment (can't get it in the US because I have not failed on chemo or ADT). Looking for any insights you might care to share, from those of you who have travelled this path and beyond.
Prostatectomy 2012, Oligometastatic 2... - Advanced Prostate...
Prostatectomy 2012, Oligometastatic 2021. Metabolic approach ,no ADT, no chemo. Interested in Lutetium 177, Dr. Kwon Mayo patient
It's very sad that you followed some very bad advice from Dr. Kwon (who is not an oncologist) based on his inability to image your cancer. It is equally sad that you followed the "metabolic approach" of the quack Jane McClelland and have allowed your cancer to progress even further. I hope you will see a top-notch medical oncologist in the future.
I guess I am shocked about Dr Kwon. The posts by his patients in groups have always been so positive. His YouTube videos portray him as the doctor whose goal is to kill the cancer. He uses taxotere as well as ADT and radiation to aggressively fight pc. How could he have gone so wrong in this situation? What am I missing? Thanks so much.
He infamously said, "imaging is everything." So wrong! What he doesn't understand about imaging can fill volumes. The best PET scans cannot image anything smaller than 5 mm, and they have a sensitivity of only 40% - flipping a coin has better odds. I'm a big proponent of PSMA PET scans, but I know they are only showing the tip of the iceberg, and treating only what one can see is a BIG mistake.
I think he's a very nice guy - I liked him the one time I met him. Patients often rate doctors by how much they like them. Some doctors get a good rep among patients by marketing to them - youtube videos, patient conventions, etc. I don't really care how nice they are - I'm not marrying them. I also know if they are on the leading edge of their field by what they publish in the top peer-reviewed journals. I evaluate doctors on whether they know their shit. The best doctors have the admiration of their peers and present to them (not patients) at the important conventions.
Thank you so much for the information. I will be more careful about what information I trust in the future. I guess I also trusted him because I think he’s head of the Mayo Prostate Cancer area in Rochester. The Mayo is so respected. But I did hear that not all his fellow doctors agreed with him. “Let the Buyer Beware “.
McClellan’s book kept popping up in one group by someone who claimed to be a patient. It was the same verbiage each time. So I questioned him and advised he sounded more like a book promotion. I also reported it to the Administrator due to the concern. As far as I know the posts stopped. The situation just felt fishy.
Mayo Rochester has now brought in Oliver Sartor.
Every cancer is different. Prostate cancer preferentially metabolizes fats, not glucose, until late stage. And there are no trials that show that restricting glucose has any effect on even the cancers that do metabolize it. Rapidly replicating cancer cells will use any fuel - restrict one, they switch to another. I think Jane McClelland appeals to anti-vaxxer types who have no understanding of medical science.
Wow. Swell job trashing that doctor.
Any doctor who markets to patients using youtube videos is leaving themselves open, IMO. Kwon is excellent at genomics, which is really his field.
Any doctor who markets to patients using youtube videos is leaving themselves open, IMO. Kwon is excellent at genomics, which is really his field.
T_A, if we assume you are correct that Mayo/Kwon is giving out very bad advice to roman44 I am genuinely curious to know what your alternate treatment plan would be for him? This information would be very helpful to all those who have post RP recurrence especially those seeking treatment at the Mayo.
You had all your pelvic lymph nodes treated with a boost to the ones that are known to have cancer - that is what should always be done.
Yes but “boosting” met(s) means first identifying met(s) (e.g. PSMA imaging). Don’t forget about the fossa bed or the possibility the recurrence could (also) be located outside those two locales. Acquiring a positive PSMA scan (or biopsy) in order to target treatment seems like a reasonable and common oncological approach especially post RP recurrence. My first round of IMRT to the fossa was begun because the RO didn’t feel the need to wait longer for a positive PSMA to get started (mine was clear at .4). I understood the odds and decided to proceed. Was that bad advice and a bad call? Don't think so as speculation (after the fact) it was both in the fossa and lymph node. But hitting both simultaneously can have serious GI side effects (e.g. win the battle, lose the war). My 2nd RO (different CoE) said it is not uncommon to do fossa and pelvic in tandem. If I had lit up the lymph node @ .4 then I am sure my first RO would have recommended fossa+pelvic. When the PSA level becomes an absolute the good part is you get early warning. The bad part is you get early warning. All the best to you roman44 in your PCa fight. I personally don’t see that Mayo/Kwon gave you bad advice but it’s important that you are comfortable with your care team, their direction and knowledgeable in this disease as you will decide your treatment path. This site is a wealth of information to get and stay educated but you have to decide what resonates and toss the rest. It’s no substitute for medical professionals and nobody here has any skin in your game.
As I said, imaging is reasonable and should be done if PSA allows. What should not be done, which Kwon advocates in his videos, is treating only what one can see. It is also a bad idea to wait for PSA to rise just to find metastases. That is a self-fulfilling prophesy - wait long enough and you will find metastases - by waiting, you will allow the cancer to spread. The decision can be reasonably made based on risk factors. The SPPORT trial proved the benefit of treating both when PSA>0.35:
prostatecancer.news/2022/05...
I don't want to discount side effects of radiation, which can be serious. But most side effects are temporary and not serious, even when the pelvic LNs and fossa are done in tandem. In fact, in the SPPORT trial, toxicity was not worse for whole pelvic treatment than for prostate bed only.
Tall_Allen,
My journey has been detoured by, among other things, a concern about multiple myeloma that appears to have gone away, so I am currently back on track regarding seeking some radioligand treatment (Pluvicto or Actininum 225) outside of the US. I sincerely appreciate all those in this group that have weighed in on that and other options for me. I have asked my wife, who has a graduate degree in cell biology and who taught college level biology and anatomy and physiology for thirteen years to explain why we went down the path we did. HELLO from Roman's wife--here is what I have to say: First of all, Jim has had three wonderful years of feeling totally healthy and normal while trying to determine his best path forward. He is not suffering from brain fog, metabolic syndrome, weight gain, diabetes...... Jane McLelland's biochemical approach to killing cancer stem cells is to block the cancer cells biochemical pathways that are involved in glycolysis, oxidative phosphorylation and cell signaling among other things. She advocates the use of herbs and off label drugs because they primarily target the cancer cells which are metabolically in more disarray than healthy cells. She does not simply focus on glucose or glutamine---the two favorite foods of every cancer. She understands that prostate cancer especially likes to feed on fats. That being said, she also does not eschew conventional therapy. She advocates for the use of both conventional therapy and herbs and off label drugs. Ditto for me. Never forget that many prescription medicines are concentrated synthetic versions of the active ingredients in herbs. But she does question things like the standard use of high dose chemo as opposed to a combination of low dose chemo and off label drugs and herbs that would be more preserving of the health and the immune system of the cancer patient as well as attack both the rapidly dividing cancer cells as well as the more slowly dividing cancer stem cells. Romand and I question the risk benefit ratio of ADT use in oligometastatic cancers. You will see (Roman just replied to your post of a year ago about ADT) with a video and upcoming study that says for those with intermediate cancer risks, there is very little advantage to taking both ADT and radiation compared to radiation alone. The side effects of ADT are considerable and potentially significantly life altering--that is why we no fans of ADT use for those with low to intermediate cancer loads. It still makes sense if you are loaded up with cancer because it will take the volume of cancer down and may also in that case be palliative. Of course, eventually you will become castrate resistant--which occurs in 99% of those taking ADT--and now you have a nastier cancer than the one you started with. Keep in mind, ADT slows the cancer (by taking away the fatty hormone, testosterone--one of its food sources)--However, it does not kill the cancer. I would rather kill the cancer and do so with the least possible side effects. In addition to Jane's tips on fighting the cancer cell, she also points up things like the use of melatonin in combination with radiation lessens the side effects of radiation on the body's healthy cells. Her metabolic approach to cancer, which focuses on the mitochondria (where oxidation phosphorylation occurs) seems to sync with the biology and biochemistry that I know. The mitochondria of the cell regulate the cell cycle---which is what has gone haywire in cancer cells. Instead of the cell performing its very specialized function for the body, it gets stuck in the M (mitosis=cell division) phase of the cell cycle and all it does is divide and divide and divide--robbing the body of the essential function of the specialized cell. This loss of the essential function needed for the body is what eventually kills the body. Jane is the first to admit that rarely does her approach alone kill a cancer, especially metastatic cancer--but it can go a long way to target the cancer stem cells, which often are not the fast growing cancer cells which are the cancer cells targeted by conventional therapy. There are many many things that can cause one's cancer to progress further--not just opting out of ADT. Good interventional treatment and timely follow up are essential when battling cancer--which are not always delivered. Roman had a "biopsy" of the prostate fossa that did not bring back any prostate tissue--only muscle and musculofibrous tissue---yet the results were labelled "benign". The prostate tissue that produces PSA is epithelial tissue. If a biopsy does not bring back epithelial tissue--no determination regarding prostate cancer can be made. Unfortunately, when something is labelled "benign" everyone stops looking in that place. Eight months later, a thickening of the anterior rectal wall is first seen on the MRI and PSMA. Then a year later it is finally decided that the thickening of the anterior wall is a spread of the prostate cancer. It is very rare that prostate cancer moves to the rectum--it usually goes for the lymph nodes and the bones. However, if the biopsy that brought back the muscular and fibromuscuclar tissue was, in fact, tissue from the anterior portion of the wall of the rectum(they are in very close proximity to one another)--that would explain the involvement of the anterior wall of the rectum in what appears to be prostate cancer. Rather than move to a colostomy or risk the radiation creating a fistula between the rectum and the bladder we are now looking to Pluvicto or Actinium to check the cancer. We are also looking for any updated information regarding the various places and people to contact regarding radioligand therapy. Dr. Kwon has recommended Kezban Berberoğlu in Istanbul. All replies are appreciated.
I understand the desperation that leads patients to try any witches brew to gain control of a situation that is mostly out of one's control. There is also the temptation to believe that someone knows something that medical science doesn't. But it has nothing to do with medical science - it is pseudoscience:
prostatecancer.news/2021/07...
It is NOT mitochondria that needs to be fixed, and there is no proof that they can be fixed. All of the cellular machinery ios out of control, and the entire tumor tissue is involved.
Rectal wall involvement is considered Stage T4. It is very tricky because of the susceptibility of enteric tissue to radiation. It may be worthwhile to consider surgery with a temporary diverting colostomy.
Thanks for the reply. I have a graduate degree in cell biology and when I was doing my thesis I published a note in the Journal of Cell Biology, so I am very aware of the world of scientific publication and pseudoscience. I normally would not go this deep into the scientific weeds on a forum like this, but I think, in this case--this one time, it is necessary. We are not trying to fix the mitochondria---we are trying to take advantage of the fact that the cancer cell mitochondria are not working properly. One of the reasons things are out of control is the fact that cancer cells often feed very inefficiently and solely via anaerobic glycolysis--this produces lots of lactic acid--lowering the pH and sending the whole cell out of control. If the mitochondria were doing their jobs, there would be no lactic acid production in cancer cells--they would very efficiently be taking the products of normal glycolysis through the oxidative phosphorylation process. The mitochondria, however are out of control. In addition to being the center for oxidative phosphorylation and the electron transport system, the mitochondria control the cell cycle---the cancer cell is stuck in the M phase of the cell cycle. The M phase has the highest energy requirement of all of the cell cycle. If you can interfere with the cancer cell's efforts at getting energy (glycolysis, oxidative phosphorylation) you can kill the cancer cells. By taking off label drugs and herbs (chemicals) that have been shown in the scientific literature (peer reviewed--all findable on Pub Med) to interfere with various pathways in glycolysis, oxidative phosphorylation and cell signaling we are trying to starve the cancer cells whose mitochondria are not working well. This will not affect normal cells, but it has worked in cancer cells. We have our own test results showing "kills"---a spike in the PSA, a concurrent spike in the alkaline phosphatase and the C-reactive protein and then the PSA falls along with the alkaline phosphatase and C-reactive protein levels for months. The problem is that it has not been sustainable. We have gotten three glorious years of zero side effects, but after three years and a very unfortunate biopsy that translocated the cancer from the prostate bed to the anterior of the rectum, it has become obvious that in order to get ahead of this type of cancer we know we ultimately need bigger guns (radiation, radioligand, possibly chemo)--but initially, we had a problem locating the cancer (that is why there was a biopsy). Without knowing where the cancer was, radiation seemed a bit risky--didn't know for sure where to aim the radiation. Chemo a bit drastic for what until recently was a relatively very slow moving oligometastatic cancer. We thought proton therapy to the prostate bed (fossa)to kill the rapid growing cancer cells along with a continued metabolic attack to starve the slower growing cancer stem cells was going to be our answer.
Now that we are faced with the rectal issue we have already discussed a colostomy with a GI surgeon (to avoid a possible fistula between the bladder and rectum that can happen with radiation). Wonder if proton radiation has better results? Ultimately we decided since the the PSMA showed a SUV max of 19 in the anterior rectal wall, we are going to try do radioligand treatment overseas. Wish we knew more about the options in Germany. We have been trying to get a response from the University of Heidelberg, but Mayo has taken two weeks to try to upload the images to their link and now has dumped 6 CD's in our lap and told us to overnight them to Germany. We are already scheduled to talk to Dr. Berberoğlu in Istanbul (Johns Hopkins affiliated) that does a lot of radioligand work with Mayo patients. Hard to leave Germany out of the equation, though, since radioligand therapy was pretty much their baby--but it has been a nightmare to get connected at the University of Heidelberg Hospital. I don't know much about other hospitals in Germany--would love to know if anyone has had experience with radioligand therapy (Pluvicto, Actinium 225) anywhere in Germany.
The only thing that matters is what occurs clinically. The rest are just hypotheses. Lab studies, even if peer-reviewed, are just so much nonsense for the patient. They are published for other researchers, not for patients. When patients base clinical decisions on such nonsense, they are practicing pseudoscience and may be harming themselves.
You overestimate the ability of any kind of scan to know where the cancer is. If you have metastases in bones, your cancer is systemic - it is everywhere. PET scans can only see tumors greater than 5 mm, but their are cancer cells in tissue reservoirs everywhere. Whether oligometastatic or polymetastatic, you need systemic therapy to address a systemic cancer.
Enteric tissue is sensitive to radiation, whether photons, protons, or radioisotopes. You gain nothing by choosing another form of radiation.
Most of the studies I have referenced in the matter of the efficacy of off label drugs and herbs are in vivo studies, not invitro studies. In vivo studies in mammals are very instructive for humans, who lead the mammalian animal classification. As far as clinical studies go--they do not all agree and many of the new ones coming out actually upend the gold standard wisdom of earlier clinical studies such as the study I sent you earlier on intermediate risk prostate cancer patients that effectively shows no real advantage to ADT and radiation for six months compared to radiation alone. Yet the side effects of ADT are HUGE. Quality of life is also HUGE when charting one's course when battling cancer--that too often seems to take a significant back seat in the quest to be a "winner" in the game of what is your PSA score.
Do you think you need to tell a cell biologist that if you have metastasis that the all of the cancer is not visionable? My graduate work involved transmission electron microscopy--I have a very good understanding what can or can't be seen regarding cells relative to today's scans. Metastatic cancer certainly requires very different and deft handling compared to a simple localized cancer. But there are clinical studies that have shown treating oligmetastatic cancer equivalently to a metastatic cancer with a heavy tumor burden can have a very high cost in the matter of quality of life, with no advantage to the the OS. Why do you assume that most patients are so ignorant and everything you do not understand is "psuedoscience"? What are your credentials in the biological sciences? Why are you not pointing out specifics with regard to the "psuedoscience" of mitochondrial disfunction in cancer. That sort of argument would interest me.
As for your reference to radiation to enteric tissue , can I quote you that "proton therapy is equivalent to x-ray (photon) in the matter of the control of the radiation once it has passed through the target tissue?" We would like to find a modality that has a better chance at not involving the bladder and the potential fistula between the rectum and bladder. I don't believe the only measure of the use of radiation is whether a tissue is sensitive to the radiation. I would imagine that Dr. Carl Rossi of the UC San Diego Health Cancer Network and pioneer of proton radiation therapy at Loma Linda might not agree with your assessment that there effectively is no difference in the modality chosen. Although, it is a refrain I hear from many centers that have lots of x-ray(photon)- radiation equipment and who are also breathelessly trying to increase their proton radiation capacity, such as Mayo Clinic in Rochester. People understand x-rays, but unfortunately most don't know that photon therapy is simply x-ray radiation rebranded. Why do you think the matter of x-ray radiation has been "rebranded" to "photon" --sounds very close to proton, doesn't it?
In vivo or in vitro doesn't matter- they are both lab studies that constitute a very low level of evidence that patients should ignore. You do not seem to understand the importance of levels of evidence or GRADE:
You may want to look at the links in this article:
prostatecancer.news/2022/07...
Everything works in mice (lucky mice!) and it almost never works in humans. Mouse studies are just a screening test for researchers to determine what is NOT worth testing further. For every 10,000 compounds screened->250 (2.5%) are entered into a preclinical study -> 5 (2%) are tested in clinical trials -> 1 gets FDA approval
Here are the characteristics of pseudoscience, which it seems like you have fallen prey to:
prostatecancer.news/2021/07...
To your points:
•"But there are clinical studies that have shown treating oligmetastatic cancer equivalently to a metastatic cancer with a heavy tumor burden can have a very high cost in the matter of quality of life, with no advantage to the the OS. " Nonsense. Show me one!
• "can I quote you that "proton therapy is equivalent to x-ray (photon) in the matter of the control of the radiation once it has passed through the target tissue?" I didn't say that so you can't quote that I did.
There has never been a randomized comparison between protons and photons but the side effects seem to be similar in monadic comparisons:
prostatecancer.news/2016/08...
prostatecancer.news/2016/08...
Once again, some engage in pseudoscience by believing that the theoretical framework of the Bragg Peak applies to toxicity in actual clinical experience. So far, the best data is it makes no difference.
You neglected to enlighten us on your academic training in the biological sciences. However, based on the telling of 'your science" you have metastatic prostate cancer all figured out. Next you will tell us that after more than 80 years of chemical castration of men with all of its serious sequelae and that predicably leads to both castrate resistance and a more seriously deadly cancer---you have the cure! Why should anyone question "your science" that points to more than 8 decades of such success?
"There has never been a randomized comparison between protons and photons but the side effects seem to be similar in monadic comparisons:" Maybe you should simply talk to those who have had proton therapy about their side effects and do the same for those who have had x-ray therapy for the same procedure--you might not find them to be so "similar" . If they were the same---why is Mayo Clinic Rochester not only running their proton therapy unit almost 24/7, but they are increasing their proton therapy offering with a 100 million dollar expansion? What are the chances that large institutions would spend millions upon millions on newer technology only to get "similar" results to the older technology? It is obvious from your posts that is your job to parrot the status quo and question nothing.
We are not retired, we are self employed, and as the week fast approaches, we have no time or interest in continuing this or any conversation with you in the future.
That being said, we appreciate the encouragement, and the insights we gain from being a part of this overall wonderful group. Thank you again to the many who kindly responded to our initial post. Your thoughtfulness is humbling.
"
"What are the chances that large institutions would spend millions upon millions on newer technology only to get "similar" results to the older technology? "
They follow several proton facilities constructed in the last 20 years that spent tens of millions of dollars on proton facilities and treat PCa patients without proof of any extra benefits. If you imagine they must have proof, show it. It's the same reason Mayo continues to hawk their expensive C-11 Choline scans well after PSMA PET scans has obviated their need. They want to make their money back!
"Maybe you should simply talk to those who have had proton therapy about their side effects and do the same for those who have had x-ray therapy for the same procedure--you might not find them to be so "similar" . "
I just showed you the experience of over a thousand PCa patients treated with protons monadically compared to similar patients treated with X-rays. Since you don't understand the value of actually observing patients in clinical studies, I guess you consider your imagination a superior source of information. (BTW- there is a legitimate use for protons in certain pediatric cancers.) Tellingly, you haven't put forth even a single clinical study.
"However, based on the telling of 'your science" you have metastatic prostate cancer all figured out. Next you will tell us that after more than 80 years of chemical castration of men with all of its serious sequelae and that predicably leads to both castrate resistance and a more seriously deadly cancer---you have the cure! Why should anyone question "your science" that points to more than 8 decades of such success?"
When patients resort to such stupid straw man arguments, it proves they have nothing useful to contribute.
Welcome Home Brother!
Same age, and by 1969 I had already bee back from ‘Nam for a coupla years (Recon Rat, 1st ID ‘66-‘67). Also bathed in AO many times!
I would be VERY interested in the outcome if your PSMA test. The LU177 also if you do it. Let us know how you make out!
My PSA bumped up to 0.74 Post RP years ago, on my last test, but I have just been watching it. My QOL is more important to me. Test again next month. We’ll see.
This is a long strange trip.
Good luck, and shoot low - they’re riding Shetlands!
Welcome Home! Tay Ninh/Nui Ba Dein Mountain '69. Combat Engineer. Opened up access to jungles/villages for you grunts and mechanized units. Sorry for spreading so much orange around, just a way of life for a year. At the time, it was the least of our worries, no? Mortars and evening base camp penetrations were the prevalent fun and games. Glad we're here to talk about our cancers. Keep up the good fight.
I was a regular of Doc Eugene Kwan for many years. He got me down the path of at least beating back the beast. However, as TA points out, he's a hammer and everything looks like a nail.
I have a great MO here in Tallahassee. Also a wonderful RO. Also, Dr. Paul Okunieff, who coined the term "Ogliometastatic" is a great go-to guy when things get out of wack. He's at Shands teaching hospital in Gainesville Fl. My PC went to the brain, very rare, but after a craniotomy & 3 SAS treatments for f/u tumors, I'm ready for duty. PSA currently undetectable and QOL great, even though I'm on Lupron & Erleada. To offset side effects, exercise is the key. Lots and lots of exercise. For brain clarity, I microdose magic mushrooms, 4 days on/3 off for 4 weeks. Then 2 weeks vacation. As a result, my brain function and QOL is as high as it's been for 15 years fighting stage 4 mets.
For the guys who served, I hope your VA is taking good care of you and picking up the tab on everything. Hooah!
consider metastasis directed radiotherapy
Addition of Metastasis-Directed Therapy to Intermittent Hormone Therapy for Oligometastatic Prostate Cancer: The EXTEND Phase 2 Randomized Clinical Trial. JAMA Oncol. 2023;9(6):825–834. doi:10.1001/jamaoncol.2023.0161
“Conclusions and Relevance In this randomized clinical trial, PFS and eugonadal PFS were significantly improved with combination treatment compared with hormone treatment only in men with oligometastatic prostate cancer. Combination of MDT with intermittent hormone therapy may allow for excellent disease control while facilitating prolonged eugonadal testosterone intervals.”
I have restarted my prostate cancer journey and am on adt since June and just started abiraterone with methylprednisolone. PSA down from 70 to 10 in less than a month. Am attempting metabolic adjustments vegetarian low carb. Considering Rick Simpson oil. Vit c infusions. Watched videos on starving cancer. Take metformin. Is Pluvicto a successful treatment? Does not seem to be a cure from what I read. Side effects are severe?
Metformin?
I started Metformin 10 years before PCa DX.
Removed Prostate, 4 years later recurrence, while still on Metformin, still taking today.
So, no, Metformin does not help, nor prevent!!!
I don't think that there is anything, other than a pre-emptive prostate removal, that would prevent prostate cancer. Since starting on metformin my PSA has stopped advancing and the last reading it retreated a bit. I only look to adjuvant treatment to restrain the disease, not cure it. I am satisfied with that.
Hi Roman44,
Unfortunately some of us unable or refuse to comprehend that there is no right or wrong approach how you personally chose to deal with your particular cancer. As long as you are capable and willing to take responsibilities for your choices and able to never regret them and never blame someone else, then your choices are always (!) the best 😉
It will always be a personal decision and willingness or not to take risk that only can be made individually based on your personal circumstances and views about QOL vs quantity that one is looking for during his experiences with PC.
I did myself tried... no treatment, alternative, metabolic, off label treatments... you name it approaches and still do some of it, however I wasn't able to stop or reverse cancer from growing... but was able to slow down PSADT significantly, however since June 2020 with my no treatments at all approaches my PSADT is 3.5 weeks and slow it down to 3 months with metabolic, of label, alternative and supplements approaches unfortunately not good enough on a "long" run😅. As a result it is necessary for me to include some heavy things like ADT, Lu-177, and external radiation into the mix... but on my own terms. If you have time and interest - you may read my profile.
Some of us unfortunately maybe stack with SOC because of financial constrains or insurances... in such situations it is much harder to deviate from SOC protocols.
I'm not judging anyone choosing completely SOC, completely alternative, complimentary or whatever treatment person chose... we all have different personal circumstances and views after all and have freedom of choice.
I'm not a doctor, but I can tell you that in your situation I would consider Lu-177 as well.
I have done myself 5 infusions. Three in 2022 and two in 2023. In 2023 I did two infusions and SBRT to femur lesion in between.
If money is not the issue, I can highly recommend Minute Medical Prof. Hartenbach in Vienna Austria, 20k Euro per infusion... his protocol 3 infusions 4 weeks apart each... after infusion you go to hotel and if you want can travel home next day... or decide to spend 3 months in Europe for whole period of treatment.
Very important to do both PET/CT scans FDG and PSMA to check for discordance... if there is discordance, then Lu-177 will be not a good option for you. Hartenbach (and almost all clinics/hospitals in Europe share his opinions) does not think it is important, but my opinion it i extremely important and I think in Australia no one will do Lu-177 to you without FDG and PSMA PET/CTs. As cancer in case of discordance might repopulate very fast and even speed it up it grows.
If I were in your place. I would do both PSMA PET/CTs, then if they show one-three significant lesions than can be irradiated and they are concordant FDG and PSMA lesions... or no FDG avid lesions at all, then I would do first Lu-177 infusion, then SBRT to visible lesion/s then second Lu-177... or SBRT between 2nd and 3rd infusions (if you can't organize it between 1st and 2nd infusions). I would also do a 4 month of Orgovyx during these approach starting two weeks before first Lu-177 infusion.
If scans come up with some FDG+/PSMA- lesion/s ... I would personally do SBRT to them with 4 months of Orgovyx and no Lu-177 and see if it kick cancer significantly back and give some good QOL time.
You can also find many places in Germany to do Lu-177 that will cost you around 10k-15k Euro per infusion and you will need to spend 48 hours after infusion in hospital... approach there will not be as personalized and as fast as in Austria and they generally do infusions 6-8 weeks apart, but it is a good option as well.
Here you will find good reviews about Lu-177 in Finland (prices and protocol aprox. same as in Austria), much cheaper prices and good reviews on this forum are from India, protocol as far as I recall to do it ever 8 weeks. Also some reviews about Lu-177 from Azerbaidjan, Thailand, Australia, just search this forum for info.
All above opinions are mine and what I would personaly do in your situation (I have no double blind studies to back up my choices and honestly don't care to do so), I'm not a doctor and you can take or not my opinions into consideration, but I recommend you do further research and reading and consult with couple of doctors to make a final choice that you will own without regrets no matter what.
Good luck with your choices and their results!
Is you cancer in soft tissue or bone. PC comes in many flavors but chemo was very effective and eradicated my soft tissue cancer in 2015. Bone is a different story. My psa is 1.6 but still active. Targeted treatments have helped but my second set of lu177 is shrinking my leisions.
For what its worth my world famous surgeon denied reoccurance until I hit .4
When the PSA value rises after surgery the guidelines recommend to wait up to 0.2 ng/ml and then radiate the prostate. So far Dr. Kwon followed the standard route. However, as imaging revealed mets outside the prostate, it did not make sense to radiate the prostate only.
The metabolic approach can be tried in combination with ADT. How much it helps has not been determined yet. Metformin is a drug that will attack these pathways to some extend. Please do not rely on that and forgo ADT, this will make you die quicker.
To fight your mets you could take part in the PSMAddition trial by Novartis. This offers Lu177 therapy if you have not started with ADT yet.
ascopubs.org/doi/abs/10.120...
This trial is available all over the US. Klick on "Show 188 study locations" here:
Well first of all......Thank you for taking a hit for us in 1969 and serving our country in a war that wasn't a war....I fortunately got out in 1966 and missed all that shit. My only comment is that you should forget about could have and should have. Just concentrate on beating those little M.F. cancer cells now. And of course we hope you're getting the best service at the V.A. that money can buy. Keep posting with us..... lot of info here...
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 07/09/2023 6:32 PM DST
Hi Roman44
I would recommend you to contact Docrates in Finland for a second opinion. This can be done online by video link. First you will have to upload highlights of your medical records and PSMA scans. As mentioned earlier by “CurrentSeo” in his post to you it is important to do both PET/CT scans FDG and PSMA to check for discordance if possible. If you decide to go there I can recommend the Clarion hotel nearby. It offers a discount to patients being treated at Docrates,
My Lu177 experience:
in 2020 while being on ADT Bicalutamide my PSA started climbing and I was placed on another ADT (Triptorelin)
But my PSA kept climbing and I was told my cancer had become resistant to ADT. A PSMA pet performed by my Danish doctors revealed a 32mm metastasis (soft tissue) overlapping a previous radiated area by 1 square cm. Also some small spots on part of my bladder was detected.
Due to this overlap my local doctor said the 32 mm metastasis could not be removed. My PSA was now 1.1. and rising. Only medical treatment available was Xtandi and second line chemo.
I had a second opinion at Docrates and they came up with a plan to shrink the metastasis by 4x Lu177 treatments so the overlapping part of the previous radiated area was as reduced and then do a follow up treatment with 30 days of direct radiation to the metastasis and surrounding area.
Currently my PSA is <0,05 and has been since I ended treatment in Finland may 2021.
Metastasis and small spots on bladder are gone.
My only medical treatment is still ADT (Triptorelin) My local Danish doctors are taking about trying to place me on a ADT pause in may 2024 to see what happens. But I am a little nervous and concerned if this is a good idea.
Would be nice to regain some of my former strength and libido though
In regards to PC and Agent Orange the government and the VA have finally accepted responsibility and are actively treating and compensating those exposed. Still does not justify its use but at least it helps the vets effected.
I thought cluster bombs had disappeared too. Just read this AM that we are shipping them to be used in Europe. I guess history repeats and repeats.
Military service and exposure to all kinds of hazards is unfortunately part of the job and you really have no choice. For years my fighter buddies had a huge rate of PC. Well it was finally confirmed that the electronic systems aboard 60 and 70 vintage fighters was causing it. Sure hope for those currently flying the new fighters that the government and aircraft designers are smarter.
"Well it was finally confirmed that the electronic systems aboard 60 and 70 vintage fighters was causing it." Sorry, I don't believe this claim. Citations please. I've heard that high levels of microwave energy, as present in radars and such, can damage one's eyes. Pulling G's can wreck your back. I am skeptical that the environment in a fighter jet or other aircraft can cause or aggravate prostate cancer. Prove me wrong.
airforcetimes.com/news/your...
If you look further you will also find this is an issue with the Navy/Marine Jocs. If you have never been strapped into a fighter, let me just say you become part of the plane and you are enveloped in all the electronic releases that includes radar, electronic jamming counter measures and all the other electronic/fire control systems in fighters. There is no way to not be exposed to it.
OK, I read that. I still don't see a definitive link to elevated cancer incidence and "electronic systems". Maybe as a retired electronics engineer I am inclined to reject that.
Do check this youtube.com/watch?v=IVcQBY0...
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