I have been reading thru a lot of the past posts by Tall_Alan, RonOH, Learn-all, Nalakrats and many others and am astounded by the wealth of knowledge on this forum, as well as the diverse opinions.
I have been on Eligard for 50 days and am scheduled to start on Zytiga in 2 weeks after I recover from a recent oral surgery to extract an infected tooth.
The treatment that is planned for me is to start VMAT external beam radiation, 28 sessions to the prostate bed and 2 adjacent Lymph nodes that were found to show cancer in a PET F-18 axumin scan. They plan to start the radiation several weeks after I start on Zytega.
My history is listed below my question:
This seems to be the SOC for my condition. Having read about irreversible side effect from radiation I have been considering holding off on radiation to see how low my PSA goes once these 2 drugs are in full force.
One option is to see how long my PSA stays under 1 ( if it gets there ) and then put off radiation until PSA starts to rise. My thinking is that there are so many promising new therapies ( immuno, nano radiation, vaccines and others) that could come to market in the next year or two that would not have the risk of permanent side effects (especially erectile and incontinence, as I still have a very active sex life 50 days into Lupron). My research has led me to believe that some are able to remain on ADT alone for years without becoming resistant and maintaining a low PSA.
Alternatively I would start radiation once it gets under 1 since the cancer would be at its weakest at that point.
Would welcome any thoughts, ideas or opinions. and or references to studies, clinical and other that would support your opinions.
I am a risk taker by nature and am open to alternative ideas both drugs, and other therapies. My strategy is to live long enough to get the benefit of a CURE or at least permanent remission which I think could happen in the next 5-10 years based on all the new drugs/ therapies now under clinical trials.
I am used to making decisions without having all the information. A lot of similarities between trading and making PCa decisions. You do your research and make the best educated guess you can with the info you have.
I intend to have a Gene Map done at Foundation One as per Nalakrats suggestion and I would also like to find someone to monitor my Gut, Biome and other internal markers. Perhaps a Naturopath? Or Integrative Medicine doctor? Open to suggestions…
I am also open to finding a new more open minded Urologist and Medical Oncologist.
While I would like to find someone local, with telemedicine what it is now, I am also open to finding a superstar Oncologist in another city.
TIA
Scout
History:
Originally diagnosed in 2014
PSA 6, Gleason3+3=6 (rectal Biopsy using ultra sound - low tech 12 shots in the dark)
Had several MRIs and in office ultra sounds in Cali. with no change in PSA or tumor size for 4 years.
Moved towards a whole food plant based diet based on reading China Study and Blue Zones also started playing singles tennis competitively 3x/ week. over time I gave up red meat, dairy, wheat and sugar. Felt like a 17 year old and dated many single women (serially)... well mostly.
My life had never been better!
2019 PSA popped up to 8.5 had it retested a week later it was 7. My plan was to get radiation if PSA went above 10
My life got even better when I met the love of my life in Feb of 2020. She has jumped in with both feet and is determined to see me through this episode of my life where ever it may lead. I have shared all my research and info, both good and bad, with her. She has become my trusted confidant and attends all medical appointments with me. If you have a woman like this in your life you know how lucky we are.
Did nothing during Covid… had 2nd Moderna shot in April 2021.
Had PSA tested in May 2021...PSA 21.1
Urologist took a second PSA in June, it was 15.
Suggested that elevated PSA could be from inflammation so he put me on an antibiotic (Cipro) for 30 days, had both a bone and a soft tissue CT scan to look for Metastasis during that period, both came up negative. Now know they were not strong enough to give good info.
Retested PSA in July, came in at 12.
I thought I was good...Urologist wanted to send me for radiation. I insisted that we have a fused MRI so that he could target the node he said he could feel in a digital exam.
Biopsy took 16 samples, 4 to external nodule that was identified by digital exam. all 4 were 4+5=9, 2 of 2 to left mid were 4+3=7, 2 of 2 to left apex were 4+5 =9, 1 of 3 on right base were 4+5= 9. 9 of 16 samples were cancerous.
Based on this new info from MRI ( 2 enlarged lymph glans) I qualified for f-18 axumin PET scan, it showed PCa in prostate and 2 Lymph nodes adjacent to prostate and a questionable spot on femur that also lit up.
Urologist thought it was cancer Rad Oncologist and his team thought it was not.
Got a second opinion from He says he can see the same spot on femur on one of the MRIs I had done in 2015 and does not think it is cancer.
Oligometastatic stage VI A is the DX. Certainly better than spread to bones but it is out of the capsule and into blood system. My understanding is that it is the micromets and the re-emergence of the cancerous stem cells that are the problem longer term.
Started taking Eligard (6 month shot) Sept 2nd 2021 scheduled to start on Abiritirone in late Oct. after I have an Oral surgery for a tooth that shows bacterial infection in sinus.
Plan they have mapped out at is to take Lupron and Abiraterone for 2 years and radiate prostate bed and two lymph nodes for 28 sessions starting soon after starting Abiraterone.
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To be potentially curative, the radiation has to cover the entire pelvic lymph node area, which has recently been expanded. When cancer is detectable in one lymph node, there is much more in the drainage area that is undetectable.
2 years of abiraterone+ADT as adjuvant therapy will probably improve your chances at a
cure.
You may have already noticed the effect of Eligard on your libido, so your theory that you can avoid radiation-induced ED by staying on ADT permanently makes no sense to me.
Save tumor genomics for later when it may be more actionable, if you still need it. Microbiome analysis is in its infancy - there is nothing actionable yet.
Thanks Tall_Allen for the reply and the study you sighted. although it is for salvage radiation I would assume that the larger target field would also apply to my neo radiation as well. The RO that I am leaning towards said he would also target all of the lymph nodes in between the ones that indicated cancer (Perhaps because it is hard not to hit them). Your article gives me some new info that I can discuss with him when I meet with him next week.One of my concerns with expanding to more Lymphs is a concern about lymphoma in the future. they are a pretty essential part of our good health (drainage system for cellular debris) I am not sure how to think of the trade off... killing off lymphs vs. killing micromets that may or may not be present.
Re Libido - except for less desire on my part not much has changed after almost 50 days on Lupron we are still able to have sex 3-4 times /week. My partner does have to be more proactive in the beginning but once we get started it is still enjoyable. I attribute it to my daily exercice routine and a plant based diet that produces lots of NOxide. Cialis makes it better but it still works with out it. I have read that some are able to maintain sexual health in spite of Lupron and Zytiga, this is all new to me so not sure what to expect in the longer term.
I just started reading a new book by Bruce Mylrea and his wife Mindy "A Plant Powered Approach To Prostate Cancer" She has also written a book called "The Plant Powered Penis"
They claim it is still going strong 9 years into his PCa journey through surgery, radiation and two sessions on ADTs. Only anecdotal but it is a data point.
Sorry, I was confused by your writing about radiation to your "prostate bed" (the tissue surrounding your prostate). So you will be getting primary radiation to your prostate, not the prostate bed.
That is a good thing because ED is lower among previously potent men and incontinence is very rare.
The kind of radiation that has the best record of success in men with GS9 is brachy boost therapy:
However, it also carries high risk of urinary retention. Experimentally, some are trying replacing the brachytherapy boost with an SBRT boost, which is milder. In your area, Arica Hirsch at Advocate Lutheran General Hospital, Park Ridge, IL is running a trial of an SBRT boost. Her trial is for men who do not had positive pelvic lymph nodes, but she may be willing to treat you anyway. I suggest you contact her.
Radiation does NOT "kill off lymphs" (it only kills the cancer in them) and there are no reports of subsequent lymphoma.
I'm sure that if you think plant-based diets help your libido, it will. Libido is mostly in the mind. Nitric oxide is important in erectile function, but I have never heard of its place in libido.
Radiation does NOT "kill off lymphs" (it only kills the cancer in them) and there are no reports of subsequent lymphoma.Thanks as you can guess this is a learning process for me.
re libido I know mind set is important, I read some study that said 30% of patients on placebo experience cures or at least remission, sorry can't remember where or when I saw that.
Try to get a PSMA PET CT to be sure there is not distant mets. I would do whole pelvis radiation plus ADT and abiraterone for 2 years and consult if a brachytherapy boost is indicated in your situation.
Thanks Tango for your reply. PSMA PET CT is available to me at U of Chicago but I was advised by their Radiation Onc. that since I had 30 days of Lupron already in me that metastisies would not light up enough to be useful.I have been told by both ROs that I have consulted with that Brachy is not a good solution for me because of large size of prostate (158 grams) and location of tumors. Dr. Sholz in his book agrees with you that adding brachy will give the best results over time, I did ask them both.
Short time ADT increases PSMA expression in prostate cancer cells. Doctors in Germany put people in enzalutamide a month before doing Lu 177 PSMA treatment.
When I was diagnosed metastatic in 2016 by a Ga 68 PSMA PET/CT I started ADT. My PSA went down to 0.8, When I arranged to have treatment in Germany 4 months later, they asked for another PSMA PET/CT.
The PSMA PET/CT showed exactly the same mets that the one done 4 months before. It is incorrect that the metastases would not light up because you had 30 days of ADT.
Many studies have shown that a PSMA PET/CT may change the plan of treatment in around 50% of the patients in your condition. To me it is important to have a PSMA PET/CT before any treatment, particularly with a high risk cancer with Gleason 9.
"... In radiation therapy, the planned clinical radiation field changed in 87.8% of cases compared to CT due to additional information provided by PSMA PET...."
"Short time ADT increases PSMA expression in prostate cancer cells. Doctors in Germany put people in enzalutamide a month before doing Lu 177 PSMA treatment."
I found this Video of Dr. Kwon @Mayo in a reply to a post by Patrick by WSOPeddie a few years ago.
Thanks to all of you for your feedback, based on what I learned from this group I have a better understanding of what I need to do for a favorable outcome to the Oligometastatic disease I have been confronted with.
Plan is to get PSMA scan and use aggressive radiation, including SBRT if needed, as well as IMRT in conjunction with Eligard and Zytiga to attack the spots that show up when they are small and not to let them have a chance to grow or spread.
Counter attack when cancer is still weak with everything at my disposal.
Two papers, one from California the other from The Netherlands, have broken down the PSMA findings into categories. Don't recall the exact numbers now but somewhere between a quarter to a third of the tumors are unaffected by blind irradiation as they are either distant to the planned RT field or within but close or on organs to be spared. Numerous papers state that the probability for a positive PSMA detection at the lowest PSA range i.e. bellow 0.2, is 40 to 50%. Combine the two and you won't need your past floor experience for coming to the conclusion that there is a 10 -15% failure "margin" for skipping PSMA.
Maybe you can be eligible for clinical trial proteus. I was diagnosed in may 2020 with Gleason 8 , psa 20 and one lymph node involved. I went in this trial which was 6months of Eligard + apalutamide then prostatectomy then another 6months of Eligard and apalutamide. Pathological report involved the prostate +18 lymph nodes and came back as ypT0N0 and psa has been<0,006 since then. Of course my sexual life is an old souvenir but the results look promising. Maybe worth giving consideration.
Welcome aboard Scout! “ floor trader” private investor , wow ! I’m impressed . Some stress was involved Id assume ? I’m no doctor or expert but I’ve lived six yrs with APC . I would get the RT and follow the plan . Take naturalpathic treatments if you choose along with the conventional . We all get side effects to different degrees . Live healthy and work out daily if you’re able . An aggressive pc will kill you rapidly in great pain if it goes un checked . You have love . That’s a reason to endure . Good luck Sir !
Get a consult from Sartor at Tulane. He practices medicine like a trader.
He is also on the cutting edge of bipolar androgen therapy (BAT).
If you get your lymph nodes bathed in Radiation, make sure they do weekly tracking of your Cd4 T-cells. You have a finite number of them and they don't ever grow back.
Dr. Myers had about a thousand pca patients that got the lymph node radiation bath treatment, and inadvertently discovered it was associated with the killing off their Cd4 T-cells. These are sort of important. They are the generals of your T-cells and contain much of you immune system memory (which is probably why nature has seen no benefit to growing new ones)
Explore Sbrt radiation therapy from some one who specializes in it.
There is a statistical basis for choosing to hit the cancer hard with multiple treatments all at once instead of serially.
It decreases the likelihood of generating new variants. Some trials back this up, some don't. This is the one case I trust the statistics over the trials.
There is a good support group at Glenview hospital. Join it. Also at Glenview hospital there is a male advanced practice nurse who specializes in prostate cancer sexual functioning. He belongs to their urology department. He is booked 9 months out. Get on his appointment list.
He has a PhD and writes books on the subject. He may be the best on the subject in the Midwest.
Northwestern Memorial Hospital used to be for chit. Filled with cut and run urologists. Now they are tops in nation. Might be a good convenient place to get medical oncologist second opinions.
Listen to Tall Allen. Smartest best informed guy here. Better than most Docs. Though sometimes a bit rigid in my opinion. LoL
treatment that consists in periodical oscillation between castration levels and supraphysiological levels of testosterone in order to prevent the adaptation of prostate cancer cells to a low-androgen environment.
Sounds interesting do they start this up front or after finishing the 24 months on the dual ADT +Zytiga regimen?
How do they induce supraphysiological levels of testosterone?
Re : Cd4 T-cells If I track them how do I save them?
I will call Northwestern Mem. and get on his list.
The RO in that I have consulted with has SBRT at his disposal but has chosen VMAT IMRT 28 sessions, how would you use the SBRT? in conjunction with IMRT or in place of?
I like the idea of hitting it hard upfront. I saw a interview with the head on Oncology at Mayo and he was advocating adding Chemo ( Doxotyl??? I think) to the upfront ADT and Zytiga cocktail. no studies done but his intuition led him to believe it would work. Of course he would not have to deal with the side effects.
"bipolar androgen therapy (BAT)." is when Androgen Deprivation Therapy stops working.
Sartor was actually interested in trying straight testosterone.
These are at levels where you need to inject it with a needle.
"I like the idea of hitting it hard upfront. "
If you are fighting an adaptive self-replicating adversary, the hard cold math is hitting it hard, knocking it down, waiting until it gets up again, and repeating.
Doing otherwise gives it too many chances to experiment and adapt. Like Covid did evolving into the Delta Variant.
Sort of the exact opposite of what the Dummy class in the US insists on doing with Covid.
ThanksYour profile does not have a history of what your experience with PCa has been. I would be interested in hearing what you have done and where you are at now.
If I understood your question (if it was a question or instead asking for opinions) - you want to minimize treatment now in order to take advantage of better/curative treatments you feel are down the road a bit. And you'd like to continue to be capable of some sex at the same time. To do this you're inclined to pass on radiation treatment at this time because you feel the side effects might include an inability to have sex.
Did I get this right?
My answer to the question (believing it is a question) is a question back: Is there anything aside from the sex issue that makes you want to delay having radiation? There are obviously side-effects from radiation, but lack of ED isn't one that seems to be all that common. ED is much more likely to be caused by ADT, but in your case, it seems you're one of the few lucky men who haven't experienced this while on ADT.
As others have said - hitting it as hard as you can - as soon as you can - seems the answer to me. The miracle cure treatments that are just down the road have been just down the road for a long time. Some evolved into a reasonable treatment, but none that might be described as a miracle. As they say "Past performance shouldn't be construed as an indicator of future success.." (or failure.)
Unless there is something about the radiation treatments (SBRT or Brachy) that really counterindicates its use at this time, if I was in your situation, I'd go for it. Several studies have shown the seemly odd effect of remote metastases shrinking or disappearing when the primary tumor in the prostate is treated. Why? Dunno if anyone has figured that out yet, but enough studies have shown this effect for me to believe it's a real thing. For sure it should help reduce the number of seed cells circulating in your bloodstream, and that should lessen the chance of future metastases starting up.
Thanks Don you did get it right.My main concern is loosing ability to have sex, one of the studies I read (might have been sent to me by RO at U of Chicago when I asked about ED) was that 30% loose function after radiation and at 2 years up to 50% are unable to have an erection. These seem to be permanent where as ADT and Zytiga are reversavble if one is lucky enough to have them work and you are able to discontinue them. I am of course concerned about incontinence as well.
I was also concerned about damage to adjacent organs and death of Lymph nodes but TA disabused me of the second idea.
Several studies have shown the seemly odd effect of remote metastases shrinking or disappearing when the primary tumor in the prostate is treated.
thanks, that is very encouraging
based on the info I have gotten as feedback on here I am now planning to get the radiation
AbstractIt is well known that tumor cells migrate from the primary lesion to distant sites to form metastases and that these lesions limit patient outcome in a majority of cases. However the extent to which radiation influences this process and to which migration in turn alters radiation response remains controversial. There are preclinical and clinical reports showing that focal radiotherapy can both increase the development of distant metastasis, as well as that it can induce the regression of established metastases through the abscopal effect. More recently, preclinical studies have suggested that radiation can attract migrating tumor cells and may thereby facilitate tumor recurrence. In this review, we summarize these phenomena and their potential mechanisms of action, and evaluate their significance for modern radiation therapy strategies.
Several studies have shown the seemly odd effect of remote metastases shrinking or disappearing when the primary tumor in the prostate is treated. Which studies have shown that remote metastases will shrink when the primary tumor is treated? Do you have that studies?
If you extrapolate the results from the RCTs that proved that radiation plus hormone therapy prolongs survival in men with skeletal metastases to your case; regional lymph node metastatic prostate cancer, it points towards that radiation in addition to the hormone therapy prolongs the time to recurrence by a couple of years. You need to weigh more life years against the affected quality of life.
LOL... Right on Johnguilty as charged, Peter Pan complex in full bloom
“A risk taker by nature” I like it , I was the same .. although I never had a t check prior to dx I think I and you were probably high testosterone guys until this. “Floor trader” of yah! Risk and reward. I respect your experience there. Take care Sir! You’ve got to fight for your life now. You can put this beast away for many yrs. but not without pain . Good luck in all you do !
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) and then put off radiation until PSA starts to rise. My thinking is that there are so many promising new therapies ( immuno, nano radiation, vaccines and others) that could come to market in the next year or two that would not have the risk of permanent side effects (especially erectile and incontinence, as I still have a very active sex life 50 days into Lupron). My research has led me to believe that some are able to remain on ADT alone for years without becoming resistant and maintaining a low PSA.
Should I start ADT ?
To Do Radiation or Not do Radiation?
Proton Therapy Had PT Therapy 15 years (2009) ago 5 year follow Up No Cancer Just Diagnosed with Mets in Bone/Pelvic Lymph Nodes in 2024
Additional PC treatment 
Crossroads - ADT or wait for psma pet/LU 177? Meeting with oncologist to discuss tomorrow 
