I’ve been told that I will be on ATD meds for life, I’m 63 and have been taking Lupron and Zytiga for going on two years. I asked my MO about Orchiectomy and he said if I did it he would still recommend Lupron. Can you guys please share your thoughts and experiences?
Thank you in advance
Interesting question, eager to learn from experts here.
I assume you misunderstood. He means to continue with Zytiga. You can drop Lupron after Orchiectomy.
However, Zytiga monotherapy works almost as good as Zytiga+Lupron. So you could omit Lupron and continue with Zytiga without Orchiectomy. pubmed.ncbi.nlm.nih.gov/354...
What would be the advantage in taking Lupron?
To handle any testosterone produced by the adrenal glands.
That's what abiraterone does, not Lupron.
Maybe I got them mixed up. So, even with Orchiectomy I would still need abiraterone?
Yes.
i had orchiectomy and my testosterone is something like .1 ng per decilitre so i am not taking aberaterone . there is no testosterone from any source to reduce. i would imagine that if your testosterone is still significant than you may need to worry about other sources like the adrenals .
Bad choice to forgo abiraterone. It eliminates all androgens, not just testosterone. It also prevents the cancer from manufacturing its own testosterone in the nucleus, which does not necessarily show up in the serum. It prevents the androgen receptor from becoming self-activating in the nucleus. STAMPEDE proved that abi+castration improves survival and slows progression compared to castration alone, in spite of the fact that testosterone is negligible in both cases.
do you think i should bring this up with my appointment with Dr Aggerwal? My other MO discontinued it and I do not know if Aggerwal noticed?
Send an email.
Thank you Allen. I had been wondering about this. If you remember, castration was part of the surgery I had. My testosterone runs very low but is never 0. I had a second batch of radiation for metastasis and getting am having my PSA tested mid-February to see if I am once again undetectable. If not, this will be part of the discussion with my oncologist. He has mentioned Pluvicto.
Here is my question, ‘If’ I decided to have an orchiectomy, would it be necessary to continue on Lupron and Zytiga?
Zytiga only.
Why Z only?
My husband had an orchiectomy last August. He no longer takes Lupron. He still has to take Zytiga (abiraterone) and prednisone. The Zytiga eliminates the testosterone produced from the adrenals.
A few questions please, Was your MO ok with that decision? Was in difficult to find a surgeon to perform? Did insurance cover it? What was the main reason for doing it?
The MO was perfectly fine with the orchiectomy. My husband is treated at Mayo Clinic and one of their urologists did the orchiectomy. It was covered by Medicare. His main reason for doing it was to avoid the toxicity of Lupron, one less poison going into his body.
Unfortunately it’s a simple operation. One I know had it done awake and in the office. He did not recommend anyone else doing the same.
Lupron stops the testicals from producing testosterone, other secondary ADT drugs like Zytiga, Erleada, etc do additional things to fight your Pc. When you get the orchiectomy you eliminate the need for Lupron but not the others. I’m metastatic and on ADT for life so I had the orchiectomy to eliminate drugs to do that part and I’m happy with that decision
Was your MO on board? Did insure pay?
Insurance I meant to say
Yes my MO was on board but asked me a few times if I was sure because it is permanent. I asked him if he ever saw himself telling me that I will no longer need Lupron, he said no. Yes the insurance paid.
How did you feel after orchiectomy, ie fatigue and any other symptoms.
At the moment I am NMCR pc as Pc went upto 82 and testoerone was droping 2nd therapy added Xtandi and as bought psa down to 15 after 3 months snd stil dropping, Testosterone 00.02
l am having orchiectomy this week, dropping Adt but still taking Xtandi for pc.
I am also interested in the E2 patch if symptoms are no better.
Thanks
I still get some fatigue but I’m also anemic, but I feel like the hot flushes have decreased a lot. You’ll still have no testosterone so those side effects won’t really change. Good luck.
You PSA may rise a few years after an orchiectomy. At that time it is advisable to begin ADT treatment. My advice is start with casodex. Lupron is also a good option.
I am stage 4 and had an Orchiectomy a couple of years ago after 7 years on Lupron + casodex then Lupron + Xtandi. My MO immediately dropped Lupron. I still took Xtandi until it stopped working.
My testosterone had been running in the teens and after the Orchiectomy it dropped to 4. It has stayed there (I think, the hospital where I am treated now does their own lab work and can only detect testosterone above 12 -- this way they make more $$$ -- to h*ll with the patient) or at least below 12, even when I was taking no drugs whatsoever and my PSA skyrocketed.
I am now doing Pluvicto, nothing else and my testosterone is staying down while my PSA is going down dramatically.
If I may ask a few questions…. Was your MO on board with Orchiectomy? Who did your surgery? Why did you decide to do it?
If youre on lifelong ADT/Lupron, there would be no objection from your MO to get an orchiectomy. Is your insurance Medicare?
Blue cross
First let me say that every doctor was male and everyone sort of crossed their legs when I first mentioned it. My MO understood once I explained and did not object. My urologist was taken aback as was the urological surgeon but once they heard me out, that I wanted to stop the Lupron that was driving me crazy, they we OK with it. Not one of them encouraged me.
The surgery was done by a surgeon in the urology department. He was awful. He only met with me when we were introduced by my urologist and for a couple of minutes before the surgery. I was very upset that we had not discussed testicular prostheses nor the details of the TURP he would be performing at the same time. I went ahead as I didn't want to have to use a catheter to urinate. Then I was in agony from my kidney (!) afterward and he never came to see me, sent a junior surgeon who only could prescribe oxy and wouldn't remove the catheter that was the problem -- they had stuffed feet of it up inside my bladder so my kidney was working hard to get urine into it. When it was finally removed the pain went away and I was released a few hours later. Needless-to-say I have never seen that doctor again, after writing a letter explaining exactly why.
I decided to do it because I found my emotions going bananas. I would walk into a room and suddenly burst into tears, followed by laughter, then suddenly be mad at the air! All in the space of a few minutes. I was having almost constant hot flashes and it took all my concentration and stamina to get things done. I live alone so being able to take care of myself is paramount in my QOL. Having been offered an orchiectomy at the very beginning, by my urologist in FL, I knew about that option and, boy, am I glad I finally took it!
So for you, hot flashes are better, less confusion and emotional swings?
Thanks for your response! I’m glad it worked out!
Yes, better QOL. And now that I'm off ADT (enzalutamide/Xtandi) as well, I seldom get hot flashes and feel like my old self. Pluvicto working well may have a lot to do with the feeling well, though.
Great to hear, thanks
Did insurance cover it?
Yes, no problems with standard Medicare plus Supplemental through AARP United Health Care Plan F
lupron vacation
More Lupron, or not?
Lupron withdrawal?
Confused why one must continue Lupron since it shows it's not working?
Help.
