Fun with ADT and testosterone

Posted by jeff Marchi @jeffmarc, Jun 11 5:10pm

I know I’ve mentioned to people on here that I quit taking Orgovyx. I was on Lupron for seven years and then took Orgovyx for 8 months. I did this after discussing it with my oncologist. After all this time on ADT, it was unlikely that my testosterone was going to come back quickly if at all. She agreed but also added the sensitive testosterone test to my monthly tests.

It’s always been believed that it takes as long to get your testosterone back as you were on Lupron. Not sure that really is accurate..

First month i was undetectable second month testosterone hit five, third and fourth months it went up 80% each month. Last 2 months over 20% each month and it hit 49 on month 8. This is a lot faster than we were expecting it to come back. We know that PSA comes back much quicker when you’re on Orgovyx. Did that last eight months make that big difference and offset 7 years of Lupron.

I know other people in here have reported that their testicles had shrunk a lot on ADT, but I never noticed that. I wonder if that is a factor.

I emailed my oncologist about this, as we had been discussing the number in previous months. She responded to me that based on the Embark trial I really should not let it get above 50, so I’m back on Orgovyx. She has a huge client base, she’s the only GU oncologist in the whole Kaiser system and she’s in northern California. Within 42 minutes of sending the email to her about whether or not I should go back on Orgovyx she had communicated back with me twice and put in a prescription for orgovyx. People complain about non-responsive doctors, she is available almost all the time and extremely knowledgeable.

You never know how long it will take to get your testosterone back! SURPRISE!!!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

asolidrock | @asolidrock | Aug 10 12:12pm

I want to see an oncologist but can I make an appt without a referral

jeff Marchi | @jeffmarc | Aug 10 12:41pm

In reply to @asolidrock "Want I need a referral from a urologist to an oncologist?" + (show)

Your PCP can refer you, You could go to a center of excellence and ask for a second opinion for your treatment, and then stop working with the urologist.

Your case is already quite advanced, That is what you need to meet with doctors that are trained to work with advanced cases.

surftohealth88 | @surftohealth88 | Aug 10 12:53pm

In reply to @asolidrock "I want to see an oncologist but can I make an appt without a referral" + (show)

You can make an appointment without referral if your insurance allows it. Just find out what is the best cancer care center in your area and make an app. there. We live in the area with a couple of big university hospitals, so we transferred our care there.
Wishing you the best of luck with your future treatments < 3.

lag | @lag | Aug 10 1:31pm

In reply to @asolidrock "I'm seeing another urologist after Tuesday to get a second opinion." + (show)

You do NOT need a second opinion from another urologist. You need to see an oncologist right away, preferably a genitourinary oncologist. You can find one at a cancer center of excellence. Some do not require a referral, and the ones that do would take a referral from your primary care physician. No urologist is qualified to treat the current state of your prostate cancer.

asolidrock | @asolidrock | Aug 10 1:40pm

In reply to @jeffmarc "Your PCP can refer you, You could go to a center of excellence and ask for..." + (show)

You think they will be able to help thought i might be too far gone. When I see my urologist monday what kind of oncologist do I need. I thank everyone for their support and advice.

jeff Marchi | @jeffmarc | Aug 10 1:45pm

In reply to @asolidrock "You think they will be able to help thought i might be too far gone. When..." + (show)

One thing for sure, your urologist is out of his depth. If you’re too far gone, you are definitely too far gone for That doctor.

You could go to a center of excellence and ask for a second opinion for your treatment, and then stop working with the urologist. Unless you are in an HMO you Should be able to Get treatment at a center of excellence.

Of course, if you’re in Canada, this is a totally different situation.

Your case is already quite advanced, That is what you need to meet with doctors that are trained to work with advanced cases. A Genito Urinary Oncologist will know how to best handle your case.

asolidrock | @asolidrock | Aug 10 1:49pm

In reply to @jeffmarc "Your PCP can refer you, You could go to a center of excellence and ask for..." + (show)

The PCP at the urologist said as long as I took nubeqa and the injections I would ok and just go live my life. I was kinda encouraged when my PSA went from 53 to 19 after on injection. So where are you at with your prostrate cancer and what has helped you.

jeff Marchi | @jeffmarc | Aug 10 2:12pm

In reply to @asolidrock "The PCP at the urologist said as long as I took nubeqa and the injections I..." + (show)

In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1 year later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 20 months I’ve been undetectable. I became stage four about six years ago. I did not find out I was BRCA2 Until four years ago.

After I had radiation, it took 2 1/2 years before it came back. When it came back, I was switched from a urologist to a GU oncologist, who has guided my treatment since then.

I’ve had metastasis come up which I’ve had to zap with SBRT radiation. So I am stage four

You need to stop listening to those two doctors. They are not working in your best interest. If you have Metastasis that have not been treated, you need them treated not just sit around waiting till they get worse. Sure, the drugs will keep your PSA down But 19 is not an acceptable long-term number. Your PSA should be under 1. Your doctors are setting you up to die, Defeat them and get real treatment.

asolidrock | @asolidrock | Aug 10 2:17pm

In reply to @jeffmarc "In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they..." + (show)

Thank you so much I'm gonna contact my insurance to see if I need a referral Monday and if not when I see my urologist on Tuesday I'm gonna ask him to refer me to a GU oncologist. Thanks again