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ADT doing its job - the good and the bad

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Posted 9/25/2021 8:15 PM (GMT -5)
I now have 3 data points on ADT (Orgovyx/ Relugolix) - May = pretreatment; July = 5 weeks ADT; September = 14 weeks ADT & Completion of 5 weeks PBT.

Testosterone
May 734
July 6.1
Sept 3

PSA
May 6.6
July 0.8
Sep 0.1

The bad news - despite my walking and other exercise I lost 4 pounds of muscle and replaced it with 4 pounds of fat.

Only 10 more weeks to go, hopefully I can start building back after that!
Posted 9/25/2021 9:26 PM (GMT -5)
On my second ADT go round. First time, gained weight. This time lost weight. Difference is a low carb diet. For me, exercise alone would not do the trick. Not fun, but works. Best eishes.
Posted 9/26/2021 7:44 AM (GMT -5)
Vynbal,
Don't forget about the Ugly aspects of ADT, but no need to go into that. 😉

As Newspaper lover says, not fun, but it works.

Good luck ahead!
Posted 9/26/2021 12:51 PM (GMT -5)
Enlighten me...I know there are machines that m can tell one if they lost 4 lbs...tell me the machine that can tell how the weight is distributed id est...fat vs muscle...curious minds want to know...those not curious are an answer to themselves...Perhaps that statemen( yours not my previous statement re,the curious) was hapless rhetoric fueled by frustration...which would be quite understandable...yes that must be it...keep moving regardless...
Posted 9/26/2021 2:24 PM (GMT -5)
That's quite the drop in your T considering your pre-treatment level. ADT also reduced my testosterone to essentially zero, but I was going from a starting point of 360. I wonder if in your case it leads to a more profound difference in how you felt before and how you feel now. Good luck--it's a slog, but you can make it.
Posted 9/26/2021 3:12 PM (GMT -5)
Logos:
There are a number of ways to measure body fat and most of them involve some kind of "machine." It's hard to argue that a measuring tape is a machine but a skin-fold caliper is sorta-kinda a machine. There are scales that measure the electrical resistance between you left foot and your right foot. They aren't very accurate but they are clearly machnes. A MRI machine can give you a very accurate body fat percentage figure and there are devices for weighing you underwater that are also very accurate.
Posted 9/26/2021 4:07 PM (GMT -5)
The weight information was from my annual physical last week, the doctor has a fancy scale like this https://consumer.inbodyusa.com/products/h20n and I received a full page analysis of weight, skeletal muscle mass, body fat mass, and all sorts of other stuff.

The muscle/fat changes were from my last physical, and don't capture the fact that I had put on 15 pounds during after lockdowns and before my PCa diagnosis. I started working to take off that weight after my diagnosis, taking off 5 pounds before going on ADT and while on ADT I have taken off 11 more pounds, which I owe to my walking and intermittent fasting.

Even though the Orgovyx has been quite efficient in blocking my testosterone production, I have had very few side effects and feel pretty good.
Posted 9/27/2021 10:41 AM (GMT -5)
Pda...your informative posts are always appreciated... however this one...I believe...misses the point...I was not positing the availability of machines.....I am aware of those you mentioned...my point was the threader,,,and what he used,,,its fairly obvious to most that none of the machines mentioned are as precise as he indicated...threfore I will stick with my analysis....the last one...as the most feasible(Occam's razor)...thanks for your support...logo
Posted 9/27/2021 12:43 PM (GMT -5)
For clarity the above was edited to provide such...oops not above but the original post I made on the subject
Posted 9/27/2021 12:53 PM (GMT -5)
I will quit this one while I am still behind ...Boink
Posted 9/28/2021 6:54 PM (GMT -5)

Hello, VYNBAL ----

Your initial post here is vital, because you are a trailblazer here, documenting your journey with this new form of ADT ---- ORGOVYX / RELUGOLIX.

I've been on ADT since my diagnosis in 2013 ---- so I am following all your posts.

It's a paradigm shift in ADT --- going from LUPRON, FIRMAGON, or ZOLODEX injections in the doctor's office ---- to a daily medication form of ADT, taken at home.

It's tremendous --- seeing your "data points" --- illustrating your PSA scores in free fall ... a downward spiral ... spiraling downward to the DECIMAL range.

Your treatment story is important here ... it's documenting your experiences with a new medication.

You've got many readers following your story --- I'm just one of those readers.

Above all else --- stunning & inspiring results, VYNBAL !

Here's to continued treatment SUCCESS ~~~

CYCLONE ••• # Iowa State University
Posted 9/28/2021 8:04 PM (GMT -5)
Thanks Cyclone. And I must say I am impressed and inspired with how you keep up with everyone's story and spout encouragement in an everflowing stream!

I was first made aware of Orgovyx by the RO that I chose not to use (I liked the RO, but the treatment he offered was not the best for me). The RO that I did use and the MO that came with him were familiar and comfortable w/Lupron and wanted to use that. I must admit my initial objections to Lupron were based on the injection discomfort I read about from many writers here on HW. I had asked about Orgovyx, but initially I received a lot of pushback from the docs.

Turns out my secret weapon was my Brugada Syndrome, which makes some drugs potentially dangerous for me (possibly fatally so). The fact that Orgovyx was a daily pill meant that if it started showing an adverse interaction, I could just stop it - not so with the month-long injection. That was the logic to convince my cardiologist and MO to start w/Orgovyx. The first month I had weekly EKGs and then biweekly EKGs. While there was a noticeable change, it was not a dangerous indication, and so here I am.

Extrapolating from these few doctors, I think many are reluctant to switch over to Orgovyx because (1) they are accustomed to Lupron - its tried and true (2) A daily pill relies on patient compliance, and Docs just don't trust us.

My experience has been about as positive as it could be on ADT - I don't know if I would have had more SE on Lupron or Eligard. I would encourage any guys out there dissatisfied with their first-line ADT drugs to ask their doc about switching to Orgovyx when its time for their next injection.
Posted 10/26/2021 1:15 PM (GMT -5)
Just had my MO follow-up. PSA < 0.1 (no T test done). When I first met with the MO, he chose to treat my PCa as UIR, rather than the HR that would be indicated by my T3a staging. Thus the plan was for 6 mos of ADT (Orgovyx), along with PBT. Since then, my Decipher test came back with a not-very-helpful rating of 0.54. So since Decipher was not low-risk, and I have been tolerating the ADT fairly well, I was worried that perhaps we should be taking the T3a into account and treating more aggressively - perhaps a year of ADT.

So when I asked the MO about the NCCN guidelines & T3a, he said those are just guidelines and he does not pay much attention to them - using his judgement instead. So he saw no reason to change the plan, so I picked up my last bottle of Orgovyx and went home.

33 days of ADT remaining!!
Posted 10/26/2021 3:32 PM (GMT -5)
Thanks for the update Vynbal.
I like that the Dr trusts his judgement. I think it means if necessary, he's willing to think outside the box.
I get that you might be nervous about going off ADT, but trust the Docs judgement and just keep a close eye on things. Focus on the silver lining of going off ADT, which is that you are actually going off ADT. ;-}
Posted 11/28/2021 8:58 PM (GMT -5)
Last night was my last dose of Orgovyx! My RO check-in is tomorrow and blood tests last week show undetectable levels of both Testosterone (<3) and PSA (<0.1).
In the HERO trial, 54% of men had recovered to normal T levels within 90 days. I'm hoping to be there!
Posted 11/28/2021 9:50 PM (GMT -5)

U-N-D-E-T-E-C-T-A-B-L-E range for PSA, Vynbal ---- great news that you have shared!

Always thankful for a treatment success story !

Here's to new vistas and horizons, Vynbal!

Giving thanks for your GOOD NEWS ~~~

CYCLONE --- # Iowa State University
Posted 1/17/2022 3:34 PM (GMT -5)
It is now 6 weeks after completing 6 months of Orgovyx. Had some bloodwork done for PCP to check if lipids/sugar etc had recovered from ADT. Numbers are pretty close to my last physical before my PCa diagnosis. Also had PSA & T tested.
PSA = 0.2
T = 634
I should be delighted, but although my Testosterone has recovered, I am still having some fatigue, low libido, and ED. Maybe I just need more time.
Posted 1/17/2022 3:40 PM (GMT -5)
I am thankful it is doing it's job...
0.01 Oct. <0.010 and T <.07
Posted 1/17/2022 4:12 PM (GMT -5)
That’s an astonishingly fast T recovery. I guess going off the oral medication means one is really off it.

Considering how high your T is, the 0.2 PSA seems good enough for a radiation guy.
Posted 1/22/2022 10:27 AM (GMT -5)
I am 6 weeks on Orgovyx alone and waiting for followup lab results done yesterday and initiation of pelvic SRT in 2 weeks. First week on Orgovyx and I thought that side effects were minimal. Then it hit. Night by night I was unable to sleep and drenched in sweats. Hot flashes during the day were frequent but tolerable. Does this stuff go away? How have you adjusted when taking ADT long term. Any other medication help these symptoms? Seeing RO this week to do planning session and discuss duration of ADT. Thanks
Posted 1/22/2022 11:01 AM (GMT -5)
Dr.V, I am on my third month of Orgovyx. I can relate to the hot flashes during the day and at night. I have found that at night the cooler the house the better. Over the last couple of weeks the daytime hot flashes have improved and the nighttime ones have disappeared. The weight gain has leveled off. On a side note, every time I eat spicy food I get a hot flash. To me, they are not that bad. exercise helps a bunch. My best to you.
Jack
Posted 1/22/2022 12:06 PM (GMT -5)
Thanks Jack. Actually spicy food and a beer for dinner may play a part - no more. My lab just came back on Orgovyx for 6 weeks. PSA drop from .247 to .024 and Testosterone 829 to 0. Makes me sweat to think of that rapid drop.
Posted 1/22/2022 12:37 PM (GMT -5)
Dr V,
I guess it varies from guy to guy. I don't really remember what the flashes were like early on. After 3 years of ADT I do have them daily, but not very often. Maybe once or twice during the day and always one during the early evening. Mine are of short duration.
Posted 1/23/2022 8:06 AM (GMT -5)
Just had my blood test after 3 months... I get one every three months....
Still UNDECTABLE
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