Surgery, pelvic and prostate bed radiation. 2 years zytiga/lupron. PSA <0.04 for 2 years. Radiation oncologist agrees with 2 MO no scans till PSA rises. 2 MO say no more treatment unless PSA rises.What is best next treatment if needed? Nervous not being proactive.Both MOs agreed only 2 years lupron.
What's next?: Surgery, pelvic and... - Advanced Prostate...
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I may be wrong but I think your MO’s are implying that you’ll be on Lupron/Zytiga for two years and then you’ll come off the meds and see what happens - does your PSA rise again? When/if that happens then it’s decision time as to how to proceed. More scans will likely be performed. Depending on what they show going back on your previous ADT meds or changing your ADT meds would be likely options but there may be others depending on your situation at that time.
That's exactly right. Guess i didn't word it well. I've completed all of the treatment. No more anything unless PSA goes up.
Two years on Lupron is a very long time for one's body. If PSA is below 0.04, I see no reason for any more big pharma poison unless a significant rise is seen in PSA, like a doubling time within about 6 months. For some reason they like to get us hooked up on ADT and let it ride for many years. But constant ADT is believed to be a contributor to development of castrate resistant PC cells. There is no evidence that constant ADT is more effective than intermittent ADT and some growing body of evidence indicating that it may contribute to CR PC. I recommend followng adjunctive treatment involving Ivermectin, Mebendazole and other meds that are prescribed by various treatment centers like FLCCC's Leading Edge Clinic.
Metronidazole is Fen Ben? I'm in same situation and just got my first prescription of Ivermectin. You're ABSOLUTELY correct about intermittent ADT !
Yes. Mebendazole is the human version of fenben which was formulated for animals. Also, mebendazole comes in three polymorphs, A, B and C and C is believed to be the most effective anti-cancer form by far. I bought my initial batch from a shop in India but the doctor at Leading Edge Clinic noted that unless the source has had the mebendazole tested in a lab, it is unlikely that it contains the C variant. He placed an order for me with an apothecary in New York that has had the version they sell tested in an independent lab.
Check out the brand Fen Ben available on the website. I'd like to know your opinion
When I searched on Fen Ben all I found was info on fenbendazole which is the veterinary version of albendazole with the human formulation being mebendazole. The primary difference, as I understand it, is that the conditions under which the drugs are produced for human use have stricter quality controls than for animals. Also, there are three polymorphs of mebendazole, A, B, and C. I am told by Leading Edge Clinic experts that it is the C version that is needed to be most effective against cancer but it is very hard to know what polymorph is in any given supplier's product.
The standard is 18-24 months and has good results.Unless you are an MO what you say doesn't count.
There is a growing body of scientific evidence including meta analyses of multiple studies indicating that survival rates are no better for long term vs intermittent ADT.
ncbi.nlm.nih.gov/pmc/articl...
And long term is way more than 24 months. Plus When used with Nubeqa studies support continued use until Nubeq fails.
Do what you like. But ADT is poison to the body. It's just a slower death than untreated aggressive PC. Hormones are essential regulators of all organs and functions in our body. Any drug that shuts them off is poison to the body. If they can be used intermittently and the hideous side effects can be relieved (thus increasing QUALITY of life) without increasing time to death from PC and possibly extending the time when PC becomes castrate resistant, it is a greatly superior option for me.
Thanks for your permission to do as I like. So nice to hear.
Nine years into this journey that started with G9 aggressive pca. Radiation, that also, poison, HDR Brachy, that is also poison, then yes that horrible lupron poison for two years and then three with Nubeqa. Oh, Nubeqa is also a poison according to you. My QOL actually has been no big deal. Followed TA in his suggestions. But stop and think what my life would have been if none of those were done. FYI: I survived a different cancer for 40 years before pca!
Plese tke a very deep breath, relax and stop being so dramatic. it is not productive.
Dude. Read MY bio/posts. That’s FREAK OUT mode. For G-d’s sake, chill. Your PSA is 0.04!! They normally won’t do anything until your PSA is above 4.0. As long as Lupron continues to keep your PSA < 4.0, you’re good as gold. As your next treatment, they may put you back on Zytiga or another medication in the same class such as Xtandi, Erleada or Nubeqa. Please, please don’t be a worry wart. A positive attitude and a sense of humor as gotten me through 19 years with this disease.
That's quite the history you have. I wish you continued success in fighting this unpredictable cancer.
Thanks! Try NOT to worry too much! I know this disease can get into your head. Two things which have helped me tremendously are: taking an antidepressant and I see a therapist weekly. Sometimes the body is working great. It’s the mind that may need a couple of tweaks! Enjoy life and keep us posted!
Thank you. You're very kind.
I like to call it "The Reboot" when my mind gets ahead of itself. Been fighting the beast for 14 years. A good attitude can only help and it is the one thing you have complete control of.
If you’re replying to me, you are replying to the wrong party. I’m pretty sure my attitude is great! I have you beat. I have been fighting this disease for 19 years. Just sayin’.
MJCA! I know! I was agreeing with you. I pray I will be in your position in 5 years.
Gotcha! Right now my position feels like I am between a rock and a hard place! I see my MO today. I will see what’s next in the play book!
Please report back.
Your PSA is not .004, it’s <.004, is that correct? Great! How long have you been off Lupron now and what is your testosterone? How much do you exercise and what kind? You’ve been on ADT for 2 years. Have there been and substantial changes in your body composition or other aspects of your health?
There’s definitely zero value in ‘worrying about not being proactive’, but at this point getting as strong and fit as possible should be at the top of that ‘proactive’ list.
Particularly if you’re invested in killing those circulating tumor cells you’re so keen to measure.
Thank you for your insightful reply. I had last lupron shot in May so it should be wearing off. I exercise almost every day. Aerobic for 30 mins to hour and resistance training. after. I've done so for decades. I was pretty strong till CT scan found an aortic root aneurysm. Not suppose to strain so now I do lighter weights and more reps. Will be checking testosterone next month. Yep. PSA < 0.04 for 2 years. What's your exercise regimen?
Great!
I lift 3-4x/wk, light to moderate aerobic training (zone 2) 45 min 4x/wk, intense intervals (max that can be sustained for 4min) 1x/wk plus walking, yoga/core/flexibility and balance work, odd jobs at home etc.
Also still a performing musician with some physical demands although with a lighter schedule as I age and am fortunate enough to travel more, be with friends and family etc.
Keep after it! I would try to ascertain the safe limits of that aneurysm ongoing. Again, maintaining your strength and fitness gives you the best possible chance at maintaining lifelong remission. Great luck to you!
You may be cured and require no further treatment. I know that waiting is hard.
I read guys on here getting yearly scans and being on Lupron for years. I'm sure our histories are different. I'll try to be more patient. No action unless PSA goes up. Thank you for being a source of knowledge and encouragement.
Many guys on here don't have your opportunity for curative therapy.
The question is : how high would you let your psa goes up? That is the heavy one to answer because every guys handle the rises in PSA different
Whenever my MO's agree to scanning. They say 0.2.
Yes. My husband has been on ADT for 7 years- and gets at least yearly scans- but he's only gotten below 1 PSA in the last year (although it continues to trend down) and has had a couple of spots re-light up. All to say- you need to look at people's profiles before comparing yourself.
Very well stated!
What's next for me has been is to not give this beast time and obscurity.
First, I rely on <0.010 post RP as best PSA indicator and have been testing bi-monthlyish for years. Understanding that prostate cancer can change and reduce or stops producing PSA completely, last year I began (annual) liquid blood biopsy testing because circulating tumor DNA can and does rise before PSA increases.
I also rely on annual imaging but know from my own experiences success with identifying mets varies between contrast agents and there is just no way to know which brand will work best for each man.
What is the name of the blood test you do for circulating tumor DNA so I can ask my mo to order it? Thanks
'my' hematologist uses the GUARDANT360 (they are contracted for this one). Another is FoundationOne Liquid Cdx. My current GUARDANT360 has identified TP53 R248Q alteration - last years was 'Not Detected'. I am told a TP 53 gene mutation can be coming from almost any type of cancer. As I have had two melanomas and now possible lesion on my liver not sure what this tells us - working on getting this sorted too.
Does your annual imaging include Bone and CT scans? I have had an undetectable PSA for almost 5 years and that is all I have been offered. I have inquired about PSMA or an Axumin scan and have been told with an undetectable PSA, most likely would be a waste of time.
No, not a 'less sensitive' bone scan/CT. The PSMA findings report on Head, Neck, Chest, Abdomen and Pelvis, Bones/joints, Soft tissues and my understanding is with a 'better sensitivity' than 'simpler' less expansive scans. The discussion to use several different imaging methods is compelling if we want the best chance to find mets as early as possible.
I do not agree with the statement "most likely would be a waste of time", nor what some say is a waste of money. "Clear" and NED investigative findings are very reassuring for me. I rely on <0.010 post RP, not "undetectable", and I push for my investigations because I do not want to be surprised with lots of larger easier to find mets.
As I share, over six yeas ago at 0.13, whilst Ga 68 PSMA was "clear" the Ferrotran nanoMRI identified five suspicious pelvic lymph nodes; six were confirmed cancerous by salvage lymph node surgery.
In coming weeks I will have results from upcoming liver MRI and possible biopsy of liver lesion identified on recent Pylarify PSMA, done at 0.033. My hope is the PSMA finding is a 'false positive' or a benign cyst - my intent is to rule out advancing cancer.
Why not take a QOL vacation from testosterone suppression for 2 years.
Use the time to do weights to do a little muscle building.
You can always back down if your PSA doubling rate starts to get out of control.
Sounds like we have similar profiles. My surgery and radiation were in 2013. I have never been placed on ADT. My PSA started rising. Scan showed 3 problem lymph nodes. They were radiated in April 2024. PSA has started to decrease. Now we wait and watch.
Don't worry about the "next" treatment. You're good!Great numbers. Live life!
take a vacation and enjoy yourself. You’ve been through a lot and deserve it!
Interesting discussion. Husband has been on doublet for six months and it’s working. His Mayo MO says we will see at two years and then a holiday if indicated. His Midwest MO says he feels he should stay on (given his age) and not risk a break. At the two year mark he will be 80. Well we have a ways to go to determine this and lots of new info coming out constantly.
PS. We are watching a Tucker Carlson interview with Calley and Casey Means (it’s on YouTube). Lots of incredible info about our diets!! Such as the two big tobacco companies bought all these food companies once cigarettes acknowledged to be bad. So they devoted same process to make their processed foods similarly addictive.
Eat healthy, exercise and enjoy the moment without the cloud of drugs, PSA test and PCa being forever on your mind.
I have done similar, but I had suspected bone met (did not see lymph or bone mets in your profile), so I went with triplet therapy (added Docetaxel). I decided to come off ADT at 24 months as I see no definitive data saying staying on treatment vs. intermittent while remaining in remission is better. I get PSA/Testosterone and other bloodwork checked every 3 months as well as a PET CT alternating between PSMA done locally in Atlanta and C11 Choline at Mayo.
I, like you always wonder if there is anything else I can do proactively. I've read the great info and discussions here in this group on liquid biopsies to look for telltale markers and plan to discuss that at my next quarterly visit. In the meantime all is well, and feeling a lot better at 3 years post Dx.
All the best!
Yes. I had two pelvic nodes and prostate bed 7 months after surgical removal. They followed STAMPEDE trial treatment. No scans or treatment unless PSA goes up.
In case you're not aware of the incredible success that Dr. Kathleen Ruddy, cancer surgeon, and others have been having using repurposed drugs. See:
Regarding your comment about having an aortic aneurism, I also have this( as well as MPCa ). My understanding is that aneurism is much more life threatening than MPCa. Control of blood pressure is critical, and I have 6 monthly ultrasound scans to check on the diameter of the aneurism.
Is yours abdominal? Mines aortic root so using CT scan but only yearly.
Mine is lower abdominal and I am on a monitoring program which will see intervention when diameter reaches 55 mm. Currently it is at 52 mm and increasing about 3 mm pa. Interventional involves a large stent inserted via a femoral artery and the diameter of these at the iliac crest are also monitored to see if they are large enough. Fortunately I have never smoked so these have not become restricted.
Having had two coronary artery stents I am relaxed about the aortic procedure.
How large is your aneurism ?
Tony
Only 4.5 but the location means open heart surgery and possible aortic valve replacement also. Nonsmoker, too. Quite a shock when found incidentally. Good luck!
I had pretty much the same as you except also a 5 day intense radiation to my sacrum because of a small lesion. That was over two years ago. After over two years of Lupron Abiraterone Prednisone, with PSA <.01 and clear PSMA PET scans, I’m going off all ADT until my PSA goes up. One year, five years, or ten years of life as a man again are worth it since my side effects have been severe and getting worse. Since I am also scheduled for IPP and AUS, I am looking forward to being a functional man who doesn’t have to wear pads. PC definitely builds character 😂
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