Added Xtandi to Orgovyx. PSA falling, but Test. Still rising.

[Startech]

Hello everyone. Mo says continue orgovix because I'm still considered castrated under 50. This last month has been kind of tough, as I think I'm experiencing PRES posterior reversible encelophalopathy syndrome. I messaged my MO some of the symptoms like blurred vision dizziness confusion light-headedness lethargy and his response was sorry you're not feeling well, you need to consider adding zometa. He's really a nice doctor so it shouldn't be too hard to fire him. What's the general consensus if my Test. continues to rise?

[Tall_Allen]

How high is your T?

[Startech in reply to Tall_Allen]

My T was 18.5 Jan 3, and 21.5 Feb 3.

[Tall_Allen in reply to Startech]

That's terrific!

[Startech in reply to Tall_Allen]

Thanks TA!

[kainasar]

Maybe the MO thinks you have hypercalcemia. That can interfere with brain functions.

[janebob99]

Zometa is for fighting osteoporosis. If you use transdermal estradiol, you will very likely grow bone and prevent osteoporosis. My bone mineral density increased by 10% over a 8 month period on estradiol (N=1). Data from the PATCH trial supports this result, as well.

[Startech in reply to janebob99]

Thank you, I'm not on Zometa. The side effects of long bone breaks and osteonecrosis doesn't make sense to me. So I added vitamin d and K2 and maybe I'm overdoing it. I see you're somewhat of an expert on e2. I haven't really looked into it yet but so far it looks pretty appealing. Except for the boobs part...

[janebob99]

Google "Patch" and "bone mineral density" or "bone", and you will find papers on how well estradiol fights osteoporosis. What was your last DEXA scan data, and date?

Since your testosterone has been castrated on Orgovyx, your estradiol is close to zero. That's why you likely will have hot flashes and osteoporosis. At the least, you need to supplement E2 to bring your E2 levels back to the high end of normal, and preferably 2-3 times the high end of normal.

[Startech in reply to janebob99]

Okay I found my report. It was done June 1st 2023. It states I have osteoporosis, but to me the scores indicate osteopenia. The worst being T score -2.5 in my neck.What's everyone doing about boob enlargement and I was going to look into replacing xtandy and Orgovyx? Thank you for your help.

[garyjp9 in reply to janebob99]

So if we assume a "normal" E2 range of 10-40 for a man, are you saying that it would be OK to continue supplementing E2 up to a level of 80-120?

[janebob99 in reply to garyjp9]

yes. The average E2 level of 750+ men in the PATCH study was 230 pg/ml. Now, that was for doing high-dose estradiol ADT (eADT). The range of measured values covered was 90-580 pg/ml, which had an excellent safety profile despite some very high values.

A medium-dose target level of 80-120 is much lower than the PATCH study, but it still may be sufficient for eliminating hot flashes and osteoporosis, while having a lower level of gynecomastia and mastalgia than observed in the PATCH trial..

[janebob99]

Thanks. Yes, it sounds like you have osteoporosis. Supplemental Estradiol will prevent any more bone loss, and you may find that your BMD increases. That's what happened to me (10% increased in BMD over 8 months on estradiol).

Some people get prophylactic breast irradiation (1-2 session), which prevent breast enlargement. Tamoxifen is also used, but some people believe that tamoxifen would interfere with the ability of estradiol to lower testosterone as a replacement for Lupron ADT. I wanted to do RT of my breasts, but the machine was scheduled too far out to make a difference. I'm used to my larger breasts now and it's no big deal. My wife doesn't care what my chest looks like, too.

[Seasid in reply to janebob99]

You could get a breast surgery. That is the only sure way.

[Startech in reply to janebob99]

Hey Janebob, I saw that you got your PCP to prescribe the e2 patches as your onco refused. Have you told your onco that you went around him and are on the e2 patches? Can you give me a link to what you showed your PCP? Thanks.

[janebob99 in reply to Startech]

Yes, my MO is fully OK with me doing supplemental estradiol, even through she wouldn't prescribe it early on. She originally said that she "didn't know anything about it", so she couldn't prescribe it. Now, she is much more informed about it and has agreed to monitor my PSA and T every month, instead of every 3 months. She doesn't monitor the E2 level because she doesn't know what to do with the numbers.

If you send me an email request to [e-mail], I will send you the best, most recent publications ( .pdfs) to show your doctor(s) about transdermal estradiol.

I'm actually using E2 gel, not patches, because I had a hard time getting the prescription for patches filled in a timely manner. I get my E2 gel from my local compounding pharmacy, and I get a high concentration of E2 (1% E2). The commercially available gels for women are much lower concentrations: 0.06% for Estrogel.com; and 0.1% for divigel.com. Use of a high concentration (1%) compounded gel allows the cost to be as low as $1 per day.

Approximately 10-15% of men suffer from dermatitis from the adhesive used in patches, also.

Bob

[Seasid]

I hope that you are now relaxed about your great testosterone levels. (Otherwise because you are also on xtandi even higher testosterone levels would not have any negative impact on your situation.)

[Startech in reply to Seasid]

Thanks, I just had more blood work done yesterday and my PSA is continuing to fall as my testosterone rises. I'm making an appointment with my onco about adding e2.