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Endocrinology for ADT Side Effects
It's been 2 years since I completed a 4 months regimen of Orgovyx. I had been advised that Orgovyx was easier to recover from than other forms of ADT and 4 months was the minimum duration for use of the drug.
However, after two years my body now seems to be irreversibly rewired., symptoms still remain:
- Hot Flashes
- 10 lbs. visceral fat
- Less strength and energy
- Moderate ED
- Some breast tenderness
After the first year of symptoms, my medical team were in favor of ED drugs, then, Testosterone replacement. The ED drugs work OK for ED, but, the other symptoms remain, so I rarely take them. TGel had little to no effect on my symptoms and I've been weaning myself off of it and now only use 1 pump every other day. The urologist advises me that taking T supplements reduces your natural ability to produce T, so why take it? My T is around 400.
Hence, in the last visit with my primary RO, she referred me to Endocrinology who I'm now scheduled to see in a few months, first available. Needless to say, I'm not optimist given that the Drs., 6 or so that I consulted, don't seem to have a clue. Anyone have success with the Endo route?
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while Orgovyx and Nubeqa seem to be working very well for me- dramatic drop in PSA from 60 to < .02 in
3.5 months- I am faced with about 20 more months of ADT...I am tolerating the side effects ( was prescribed Erleada initially but could not tolerate the drug combo with Orgovyx) , mainly hot flashes...but am worried about long term persistant or damaging side effects...it is a bit like chemo. the first goal is survival but it prob comes with a price..body damage..some of which may be irreversable. My sex drive is also < .02 btw !
I do plan to discuss with my doctors..but since Orgovyx is fairly new, there is not a 10 yr study on side effects..or even 5 yr...is there ?
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2 ReactionsMust admit your situation is quite unusual. I have never heard of someone having hot flashes when their testosterone has reached 400. Usually, they go away when people hit around 200. I’ve been attending weekly advanced prostate cancer meetings for five years and have never heard of this.
While low testosterone can affect your desire for sex with a higher testosterone you shouldn’t have ED issues Unless something else is going on. Do you really have no desire as well is ED?
Hopefully the endocrinologist can come up with an answer. Definitely a strange situation.
I’ve been on ADT for eight years and of all the problems you have listed the only one I have is the ED issue.
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2 ReactionsI took Orgovyx for two years. Stopped taking it on 6/1/24. T went down to single digits, all the side effects, no libido at all and ED.
When I went off of it, it took about a year for my T to get back up to around 180, just below the low side of normal, we'll see if it's still climbing at my next test in March (Graduated to the 6 mos plan now).
It's just been the last 4-5 mos I've noticed,
-belly weight moving to muscle mass, pants fit better!
-Small gains in the strength dept.
-Less joint pain, a whole lot less hot flashes. I seem to get one at night, perhaps once a week.
-the "desire" is back but not the "ability", but, that's improving as well. (that wasn't a very scientific explanation!)
The urologist is starting to try to get me to consider T replacement therapy but I have problems with the idea. I know the science behind it. I just can't get over the idea that it might be like throwing lighter fluid on a fire that's almost out. LOL
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4 Reactions@jeffmarc Yeah, I must admit I feel 'special' having studied the matter for some time. The only thing I never lost was libido, but, that may be some form of 'muscle memory'. Hopefully, someone else on MCC is on the same path, but, it's doubtful. Endocrinology is just a stab in the dark and when I read what these people do, it's not about helping us, PCa folks.
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2 ReactionsI get this vague sense from urologists and oncologists that you can't give T supplements to prostate cancer patients no matter what their PSA, their Gleason, their PSMA shows because the cancer is always LURKING in the lymph nodes, the body, the ether, waiting to strike.
@mccannr
Actually, they use BAT to treat Advanced prostate cancer patients who’ve had their ARPI stopped working. Doesn’t work for everybody, but I can reset the body so that the ARPI works again. Some people will have quick PSA rises that can’t be helped. This uses monthly testosterone injections.
Here’s one place you can read about BAT treatments
https://pmc.ncbi.nlm.nih.gov/articles/PMC9313844/
They say it’s a new treatment, but it’s been around for at least 20 years. I was offered a few years ago if I had my ARPI fail.
Here’s another magazine that not only discusses BAT with Dr. Sartor, but also BRCA with PARP and advanced prostate cancer treatments
https://online.flippingbook.com/view/150884930/2-3/