I've been on Orgovyx for 33 months for metastatic prostate cancer. Constipation is a known issue with Orgovyx and it has affected me to some degree most of the 33 months. Earlier this year it seem to get more chronic and intractable. I'm also currently using a 37.5mg weekly E2 patch, up from 0.025 twice weekly up until last week. In April my onco raised the possibility of having an orchiectomy and stopping the Orgovyx. At the time I thought that was a little extreme, but as the months have gone by the constipation seems only to have worsened. I'm otherwise satisfied with Orgovyx, but have a history of heart valve surgeries due to congenital defects, so it may be beneficial to stop it at this point due to risks of cardiac issues down the road.
I now have a referral to a surgeon for orchiectomy.
I've read where patients who have had this are satisfied. I'd be at a lower T level that my current level around 18. Will this increase brain fog? I exercise daily. Will the E2 help with brain fog at a lower T level? Dealing with the constipation and GI issues has me thinking a lot about going through with it and it should relieve my constipation.
Thoughts?
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I used them daily, senna, docusate, sometimes Miralax, plus major fiber in diet. Even enemas and gel suppositories haven't been much help. It's not that I can't go, it's that it is only partial emptying and lots of time trying.
My doctor suggested this approach because my QOL is very negatively impacted by the chronic constipation that is a known side effect of Orgovyx and told me an orchiectomy would basically provide a similar T level to what the Orgovyx is currently providing without the meds, Outside of the constipation/GI issues I've been pretty satisfied with Orgovyx because of a history of heart valve replacements, and I didn't want to go to an older ADT.
"Results: Bilateral orchidectomy and degarelix showed comparable results for PSA reduction, but there was a statistically significantly lower castrate level of testosterone in the bilateral orchidectomy group. Using the EROTC QLQC-30, bilateral orchidectomy was associated with better HRQoL, better global health status, and better functional status.
Conclusion: Bilateral orchidectomy resulted in lower castrate levels of testosterone, which may be associated with better disease control, together with better HRQoL and general health status compared to LHRH antagonist (degarelix). These results indicate that we should consider revisiting bilateral orchidectomy as a valuable and effective treatment option for ADT."
Retrospective studies like that are flawed by selection bias. Fortunately, a prospective randomized trial was done. It found:
"Significantly lower levels of testosterone within the castrate range were reached using the LHRH agonist triptorelin versus subcapsular orchiectomy. "
I’ve had orchiectomy and I’m very happy about my decision. I exercise daily, running and weight lifting. I follow a plant based diet plus fish. Very glad that I don’t need lupron four times a year.
A Whole Food Plant Based lifestyle will fix your problem. You will take a huge healthy shit every morning, your blood pressure will normalize and it will help any other metobolic problem that you may/could have. I take Orgavyx too and one day of street food and I can't poop for nothing.
For $1.47 at Walmart why not give this a try before Orchie. Buy the Freskaro Magnesium Citrate Oral Solution 10 oz, Lemon Flavor, shake it up, rub some on the inside of both wrists and elbows, back of the knees and on your earlobes. Give it 12 to 24 hours and see if things don't flow out better. After surgeries and antibiotics it usually works for me in 12 or less hours. NOTE: the more you put on for absorption, the quicker and liquidity it works. I'm not a Dr. so it'sjust a suggestion and GOOD LUCK if you do the Orchie.
you could get the orchiectomy then monitor T levels if it does not go down to the level you are at on ADT, which is unlikely but I suppose possible, then you could add back ADT leaving you no worse off, but potentially better off wrt. side effects?
I went the orchiectomy route in March, 2021 after a diagnosis of mPC with a PSA of 248 and Gleason scores of 9-10 on all cores. Since then I have had no follow up medications. Side effects have been minimal, primarily hot flashes (which seem to be more common in hot weather).
After a PSA nadir of 0.43 a year after surgery it began to rise slowly. Earlier this week I had my quarterly blood work and it had risen from 7 to 13.1. I see the oncologist next week and expect him to schedule a scan and probably begin abiraterone. (suggestions for my next step are welcome!)
The orchiectomy has worked out well for me. I have continued to work full time and continue bicycling for over 3.5 years now with very minimal problems.
"... orchiectomy route in March, 2021... PSA of 248 and Gleason scores of 9-10... PSA nadir of 0.43 a year after surgery it began to rise slowly... from 7 to 13.1. I see the oncologist next week and expect him to schedule a scan and probably begin abiraterone..."
Two years after radiation, my PSA rebounded to 3.78. A scan showed mets. Only then did I begin ADT with Orgovyx and abiraterone. Similarly, I think your scan will show that treatment with orchiectomy and no ADT has allowed mets that are producing the PSA.
You may be correct there. I fully expect mets to show up on the scan. But I am inclined to think that, based on the Gleason 9-10 scores, that would have happened regardless.
Studies have shown that the net results of of orchiectomy compared to hormone therapy are essentially comparable, perhaps slightly in favor of orchiectomy. (ncbi.nlm.nih.gov/pmc/articl...
I was told early on that chemo after the surgery might increase overall survival but not by a significant amount. The down side would have almost certainly have been that I would have had to retire three and a half years ago.
So, again, I am pleased with the results I have had to date and I hope that abiraterone can give me another three years or so.
Perhaps it's an interaction between Orgovyx and CBD. Drugs.com shows one. Cannabis has no interaction but CBD is showing as a major interaction resulting in an increase in side effects including constipation. Just a thought.
"... on Orgovyx for 33 months for metastatic prostate cancer... constipation seems only to have worsened... now have a referral to a surgeon for orchiectomy."
I have been fine on Orgovyx with a high-fiber diet and 2 tablespoons of Metamucil nightly. Changing from systemic Orgovyx to an orchiectomy will not control the cancer in the mets. So orchiectomy might lower the testosterone but not the PSA.
How much magnesium do you take? I believe that helps with constipation. I use it to prevent leg cramps in the morning before I get out of bed.
Estradiol is well known to reduce glucose and bad lipid levels, but the data is inconclusive about reducing brain fog.
How many E2 patches are you using now?
0.1 mg E2/24 hr strength?
Where do you apply the patches?
The PATCH Phase-III results will be published soon (this Fall). That will be very interesting!
I currently am taking Orgovyx now for 1 month, and I also use Estradiol gel from my local compounding pharmacy. My PSA and T are dropping rapidly. I apply the gel to my upper buttocks and to my scrotum (which absorbs E2 3-4 times more efficiently than the forearm).
I'm trying to reach E2 serum levels sufficiently high so that I can stop doing Orgovyx ADT (Ref: PATCH Study). I'm using E2 gel for eliminating hot flashes (which it has), eliminating osteoporosis (I will monitor this with DEXA scans), and lowering glucose levels (too soon to tell). I've had some breast growth and tenderness. I will be doing electron beam irradiation of my breasts soon. I just completed 5 sessions of SBRT. No side effects from that.
I have been taking Dutasteride, but my T is so low now that DHT is also quite low, so I may discontinue the Dutasteride. Initially, Dutasteride dropped my PSA from 10 to 2.4 over 5 months (on Dutasteride alone), and it also shrunk my prostate volume by 40%.
I also take methylphenidate for adult ADHD, which works great. I think that would help treat your brain fog, too.
I am in close contact with Professor Wassersug, and we regularly discuss the use, benefits, and effects of transdermal estradiol therapy for PCa.
If you increase your E2 levels to PATCH levels, you should be able to eliminate taking Orgovyx. It would be worth trying before doing the orchiectomy surgery.
At least, wait until the PATCH Phase-III results come out this Fall...
Taking 400mg of Magnesium Glycinate daily. I just went up to a 0.0375 weekly patch from 0.025 twice weekly patch. I put the new patch on my thigh or the side of my buttocks. The first one did not adhere as well to rear buttocks.
The hip is also a good place for the patches, in terms of absorption; same as the buttocks.
I take 1600 mg of magnesium "something" every evening to prevent leg cramps. You may want to try increasing your magnesium intake significantly to help prevent constipation.
You are using very small estradiol patches. The PATCH study used 4 patches per week at a strength of 0.1 mg E2/24 hrs per patch. That is a total strength that is 2.7 x 4 = 11 times higher than what you are currently taking. I would suggest using the large, 0.1 mg E2 patches.
Your target serum E2 levels for symptom relief should be about 100 pg/ml, and it should be 300-400 pg/ml for replacing Orgovyx with E2 ADT.
My primary specified the 400mg dose. My onco thought I was getting too much and we did a blood test. At 400mg per day, I'm right in the middle of the range.
My husband had an orchiectomy a year ago and is very happy he did it. At the time he had the orchiectomy, he was taking both Eligard and abiraterone. The reason that he had the orchiectomy was to be able to eliminate the Eligard and have one less drug to take.
His testosterone is -2.5, so he has no testosterone. Just the past couple of months he has experienced brain fog, says he just doesn't feel right and has had depression along with it. Both times it has lasted about 5 days and then improved. We are assuming having no testoserone has caught up with him and causing the symptoms.
I am on Orgvyx also, I take raw probiotic supps, Tudca, eat fermented sauerkraut or kimchi every day with meal. Sometimes will use kefir( no sugar) evening take magnesium citrate . All work to keep me going.
I have a local farm store sells fresh kefir not sugar, Tudca helps and daily 1/2 cup ferment with evening meal . Daily ! mag citrate is a big help . Oh forgot to mention a slice of aloa vera leaf is really good, take that sometimes grocery store produce sect. or buy the juice.
You’re getting a kaleidoscope of remedies for your constipation, and testimonies of good results with orchiectomy.
However, keep an open mind that the constipation may not be from the Orgovyx at all. It may be a known side effect, but not a common one. Run down everything you’re taking-supplements etc. Surely you’re not taking opiates-now there’s one with causality!
How much do you exercise? Even being moderately sedentary is associated with constipation, especially when older. Are you sufficiently hydrated? Double check your diet. If it were me I’d first look to increasing exercise, water, dried fruit and all the rest you’re reading about here.
I have nothing against orchiectomy, but as a solution to constipation I am suspicious.
I ride an exercise bike daily plus walks and lifting weights. My doctor did caution me there was the possibility an orchie might not resolve the constipation, but was also the one who raised the possibility of an orchie.
One more here who's happy to have had an orchiectomy. I wish I had had it sooner.
As soon as all the Lupron got out of my system my mind started to clear.
At this point I'm beyond Xtandi or Abiraterone so I am not dealing with side effects from them. Just so happy to feel good and be able to think without effort. I am post Pluvicto and QOL is better than it has been in years. Hot flashes, yes. Lack of energy, yes. But I keep very active and life is good.
My testosterone is consistently "Under 12" (the local medical center uses their own test and that is as low as it goes).
I was plagued with constipation many years ago so I did the lemon juice/maple syrup cleanse. It really cleaned me out but constipation returned immediately even though I ate a diet high in fruits and veggies. I later found out how important gut flora is. I now take probiotics and raw unpasteurized sauerkraut. I get Cleveland brand at Walmart. Good BMs at least three times a day now. If you have never done the cleanse I suggest you google mucoid plaque and look at some of the pics. There are naysayers who say it is only the psyllium and bentonite clay formation. They are full of SHIT. I do these and I get stuff to pass like the pics and I do the cleanse monthly until it stops. My wife, daughter, and two friends did the cleanse and did not pass anything like the pics. Now if it is the clay and psyllium why didn’t they pass the same stuff I did? By the way, I now substitute diatomaceous earth for bentonite. DE is a silica so that eliminated the clay theory. God bless.
have a neighbor who chose to have the surgery and he is fine. Better than me and I have a T level of 150. He fought the drugs like you have and is glad he had it done. He’s a tough one. Had it done in the Dr. office while he was awake. Not me. Surgery yes awake no.
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MRI prior to HDR Brachy and HDR intensity.
PSA holding low!!
Introduction and asking for help interpreting latest scan results and thoughts on future treatment plan please.
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