I can t handle ADT drugs and want to remove testicles anybody done this

[lakeerie]

have had bracky HD plus radiation plus bone mets only 4 and received SBRT on them so should be cancer free except for possible microscopic cancer so have just tried Orgovyx and Xtandi but because of terrible headaches now want to remove testicles Sound familiar how was your outcome ??

[Vangogh1961]

Almost three years ago had the boys snipped. Couple days of pain, but back to work a few days later. I feel my hot flashes are less and I don't miss the shots. Fatigue is the same but daily exercise keeps that at bay.

[lakeerie in reply to Vangogh1961]

Thankyou so much that s what i want to hear dy you take any thing like bicalutimide or xtandi an androgen receptor blocker for the small amounts of testosterone made elsewhere in the body

[swwags]

Yes some of have. No more hot flashes for me.

[lakeerie in reply to swwags]

thankyou

[Derf4223]

Snipping ones "junk" won't eliminate testosterone enough. Sure, it would stop the need for Lupron. But an ARPI like Abiraterone/orgovyx works differently to reduce adrenal-related T production needed for best results. Most of the effects of Lupron are due to low T.

Also lakeerie you really should put some case details in your HU bio to avoid bad karma.

[addicted2cycling in reply to Derf4223]

Derf4223 wrote -- " ... Snipping ones "junk" won't eliminate testosterone enough ..."

10 years ago next Monday I saw my Urologist for biopsy/scans results and discussion of treatment plans. He said I needed ADT immediately and began telling me about the drugs used. I interrupted him and said I wanted a bilateral Orchiectomy NOW and no drugs.

10 years ago next TUESDAY I was surgically castrated. Currently *T* ≤ 2.5ng/dL = easy peasy with minimal side effects but I also eat well and exercise.

[anothercyclist in reply to addicted2cycling]

Listen to this guy. His experience with orchiectomy confirmed my choice to take the same route four years ago. To date I have had no follow up treatment or meds and no side effects other than occasional hot flashes. I may be starting abiraterone later this year but that is manageable. Orchiectomy was the best decision I could have made.

[lakeerie in reply to anothercyclist]

great news thankyou

[lakeerie in reply to Derf4223]

thankyou I can t tolerate any drugs get headaches am 75 and take no medication

[Aelement97]

I had my testicles removed (testicular cancer) about four decades ago and was on testosterone supplement.

When the prostate cancer appeared in 2010, I also had HD Brachytherapy. But continued on testosterone supplement.

Where the Pca kicked off again in 2016, I stopped taking the testosterone.

I felt tired, and had zero libido, but otherwise was perfectly okay.

I think the key thing is to get exercise, especially weight training.

Hope that helps.

Get in touch if I can help further. 😊

[lakeerie in reply to Aelement97]

great to hear thankyou

[Seasid]

Maybe you could be cured if not now then in the future. I was thinking like you but decided rather to continue on degarelix ADT injections. If it works don't change anything.

[lakeerie in reply to Seasid]

I can t tolerate the drugs and am 75 so don t care about no more testosterone thanks so much

[Seasid in reply to lakeerie]

Why don't you change Enzalutamide to Abiraterone plus prednisolone or maybe Nubeqa? And if not better than do the operation. Unfortunately every operation has some risk involved.

[lakeerie in reply to Seasid]

Thankyou for your concern but imust reduce drug intake as do not tolerate them I am 75 and take no other drugs thankyou

[Pinkyboy]

Funny you should ask! I had bilateral Orchiectomy yesterday. I was away from home less than four hours, the procedure went great, and I have found absolutely need at all for any post-surgery pain meds.

I had been on ADT for roughly two years, and since I may be around a few (!) more years, I just wanted the be done with the Lupron injections.

As strange as it seems, my total co-pay after insurance was $18 less than the co-pay for just one ADT injection. That was a nice surprise!

As an additional incentive, there appear to be statistical benefits; orcheiectomy over ADT.

jamanetwork.com/journals/ja...

[dhccpa in reply to Pinkyboy]

Maybe we can bill Medicare for t0% of the cost of each ADT saved going forward! Just a thought...

[lakeerie in reply to Pinkyboy]

Thankyou so much you made my day good luck

[85745]

For me almond joy has nuts mounds don't. Don't like ADT but .....

[lakeerie in reply to 85745]

thankyou for the info

[Nusch]

I had my testicles removed, pls see my bio. Already have four children, so no wish for more. 😉. I feel much better and don‘t need to see my doctor for Lupron shots any more. Also stick to a plant based diet plus fish and lots of exercise, which compensates some of the side effects, too.

[lakeerie in reply to Nusch]

thanks so much glad to hear you are fine

[Atlpapa]

Your ADT of Orgovyx is stopping your testicles from producing testosterone, if you get the orchiectomy you will also stop producing testosterone. The Xtandi in your ADT is blocking any residual testosterone produced by your adrenal glad from being absorbed in any remaining cancer. A question is what is causing the bad reaction to ADT. If it is no testosterone then the orchiectomy won't help. If it is the Xtandi then maybe change that for a different secondary ADT med. Stop the Xtandi for a short while to see if the issue stops. For me I had mets to the bone so I knew I'd be on ADT for life so I had the orchiectomy a couple years ago so I didn't have to keep getting taking the Orgovyx. I'm still taking Erleada (and alternative to Xtandi). I have no more hot flashes.

[lakeerie in reply to Atlpapa]

thankyou my situation is similar but my body doesn t tolerate drugs and have to at least get off orgovyx etc may then try a simple drug like bicalutimrde as androgenblocker as you mention because tried xtandi but got terrible headaches

[swwags in reply to Atlpapa]

adrenal glands produce 5% of the body's testosterone. He can't tolerate the drugs. He's 75. He's asking for advice from those of us who've clipped their biscuits on our experience.

[cesanon]

Drugs you can reverse. This you can't.

[lakeerie in reply to cesanon]

cannot live with headaches and side effects from drugs there are testosterone replacement drugs but i am 75 and just need peace and quiet Thankyou so much

[Seasid in reply to lakeerie]

Maybe your headaches will stay if Enzalutamide is causing it. Try stopping it for a short time. Enzalutamide is crossing the blood brain barrier. Alternatively you could we already suggested change to Abiraterone plus prednisolone or maybe Nubeqa?

Unfortunately there is no guarantee that the ADT drug is causing the headache. If you radiated all your visible metastasis maybe you are even cured.

I just wish to save you from disappointment. Talk to your medical oncologist. Maybe he can help you. Enzalutamide can cause lots of side effects. I didn't have headache because of degarelix.

[lakeerie in reply to Seasid]

Thanks for your help I did stop xtandi 10 days ago and am now feeling much better and will see my MO in 2 weeks

[Seasid in reply to lakeerie]

That is one of the reason that I didn't jump to have Enzalutamide. Instead I am on Bicalutamide until it works, but I am in a totally different situation because I had early docetaxel chemotherapy 6 cycles. I hope that you can still get the early docetaxel chemotherapy if it is not too late now? I started chemotherapy about 45 days after starting degarelix ADT injections and when I was deeply castrated.

[lakeerie in reply to Seasid]

Thanks for that info I will discuss with my MO

[Seasid in reply to lakeerie]

I believe that your blood work recovered after the radiation? Otherwise it would be too much to have docetaxel chemotherapy because chemotherapy will further reduction your immunity and effect your bone marrow.

That was the reason that I had first early docetaxel chemotherapy 6 cycles and when my bone marrow recovered from the chemotherapy only than I decided to get the SBRT radiation.

Unfortunately bought of these radiation and chemotherapy effect negatively the immune system and we need it to fight prostate cancer.

I refused (I am not curable) to get the pelvic radiation because it would further kill the T-Lymphocytes.

[lakeerie in reply to Seasid]

sorry to hear your situation but you never know when new treatments will be found Have Faith and enjoy every day the best you can Live for you friends and family

[Seasid in reply to lakeerie]

Thanks for reminding me.

[petabyte]

A question for people who did choose orchiectomy. Did you get prosthetics implanted?

lakeerie Did you consider changing the ARPI? Darolutamide (Nubeqa) has fewer neurological side effects than Xtandi since it doesn't cross the blood brain barrier.

pubmed.ncbi.nlm.nih.gov/395...

Maybe discuss with your MO.

[lakeerie in reply to petabyte]

thankyou have tried numerous ones but unfortunately same intolerance

[addicted2cycling in reply to lakeerie]

Sorry about those headaches and SE's. BTW, will be 75 July 10 and managed 2 bike rides today of 22.22 miles each. As I mentioned, DIET + EXERCISE keeps me going even though there are many sluggish days.

[lakeerie in reply to addicted2cycling]

glad you are doing so well I am taking walks for exercize and fresh air thanks

[addicted2cycling in reply to lakeerie]

Actually your WALKING has greater benefits than cycling because it is weight bearing and better for bone density. keep on pounding the pavement 👍👍

[lakeerie in reply to addicted2cycling]

Thanks my dog is happy to walk too

[Pinkyboy in reply to petabyte]

No prosthetics… didn’t see the point! 😵‍💫

[DesertDaisy]

My husband had it done. Surgery was easy and very little pain afterwards. No regrets. He still has to take abiraterone and prednisone since he's metastatic, but at least was able to eliminate Lupron. He feels good.

[lakeerie in reply to DesertDaisy]

great to hear he is doing ok without the boys I plan on the same thankyou

[petercraig2]

Could seriously consider high dosage Estrogen patches or gel.

Have been doing that for nine years now and Testosterone is <.4 and and PSA are <.008 which is a low as blood labs can measure.

I have no night sweats, headaches and bones are very strong from scan last year. Nice thing about Estrogen patches/gel is I can increase/decrease dosage in order to maintain control of PSA/Testosterone and therefore PC.

Best of luck

[lakeerie in reply to petercraig2]

thankyou for that alternative will check out

[petercraig2 in reply to lakeerie]

Let me know if you would like details on this. I have detailed blood work data for nine years as well as authoritative clinical docs that convinced my Oncologist to agree to Estrogen therapy as a safe alternative.

[Ralumar9 in reply to petercraig2]

Thank you, Peter. My MO wants to put me on Orgovyx/Abiraterone. I am two years post EBRT/Brachy and have 4 mets. I could handle Lupron for only 9 months after the radiation. But am now metastatic and very interested in the estrogen patches. My MO just sorta blew me off when I brought up the estrogen patches. Would you please provide the clinical authoritative docs you referenced to lakeerie? Thanks again

[lakeerie in reply to petercraig2]

thanks but i have now decided to remove testicles I am trying to reduce my medications and might only need low dose of androgen receptor blocker for residual testosterone

[Miccoman]

Had mine removed 3 years ago as Lupron was driving me crazy. Should have done it back in 2014, when the urologist offered it. I am very pleased with the elimination of the side effects from the Lupron.

I am beyond Xtandi and such so can't speak to that. Doing Pluvicto right now.

[lakeerie in reply to Miccoman]

thankyou for your info everybody i have contacted agrees that testicle removable was a good move for them It may not work for everybody but i must reduce medications

[Shorter]

Xtandi made me deathly ill, but I had no problem with Lupron administered during and post salvation full pelvic radiation, my 2nd treatment. My Original prostate treatment was prostatectomy and the surgeon botched my surgery. I had reparative surgery in a large city in a different state, which included removal of my testicles. It was and has remained for me, a non-issue.

[lakeerie in reply to Shorter]

Sorry to hear about your situation I think i will have them removed as most guys also have had no problems and i must reduce my medications Thankyou

[j-o-h-n]

There's a train with several box cars attached that are filled to the brim with our member's testicles (otherwise called Balls).... Refer to the train schedule cause It runs daily and probably stops in your town for snipes....

The train is painted blue and is called the Blue Ball express. Be on the lookout for it.....You can also buy a "good riddance" lapel pin from the train conductor (aka as Doc) for a few extra bucks...

Good Luck, Good Health and Good Humor.

j-o-h-n

[lakeerie in reply to j-o-h-n]

Thanks I bought a ticket! take care

[j-o-h-n in reply to lakeerie]

Well good for you,!!! Just take it easy for a few days...

Good Luck, Good Health and Good Humor.

j-o-h-n