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Support for wives with the Orgovyx tornado: Needing an olive branch
This spring, my husband will have been taking Orgovyx for 2 years. He was diagnosed a few months after a forced retirement, we sold our beautiful lake home to move closer to kids (a few states down), living in RV during our house build. (a few stressers)
We rented a furnished apartment close to the proton center for the treatments. We highly recommend proton! That had minimal side effects. The house was done a day before Thanksgiving and on Dec. 3 he needed colon surgery. The medical stuff for him has calmed down now BUT, the orgovyx. Lord, help us!
He is a completely different person. Easily angered, moody, depressed, has a give-up attitude. UGGGG
Has anyone had longer term orgovyx usage and can offer a positive outcome?
I'm absolutely exhausted, loosing hope. Any support groups for wives?
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So, a consideration...
@jeffmarc says ADT causes....
Inquiring minds want to know as I say, is it the zeroing out of testosterone, or zeroing out of estrogen in our system!!
Interesting article...
https://pmc.ncbi.nlm.nih.gov/articles/PMC11177789/
Perhaps consider discussing a different treatment path, estrogen vice ADT if he's having difficulty.
The PATCH trial in England is what is generally used as a basis for it. There was an article in the New England Journal on it, I can attach the paper if interested.
There are also other treatment option such as ARI monotherapy, see the EMBARK trial.
Point is, there are other treatment paths which may achieve similar outcomes but with lesser side effect profiles.
https://estradiolinitiative.org/
Of course, getting your medical team to open their minds to it may present challenges...
Kevin
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2 Reactions@kujhawk1978
I think that this is great idea - why not try different "ADT" all together now that we have options ? Luckily Estrogen is now becoming more and more used after that study came out : ))). My husband has very little SAa from Orgovyx and Nubeqa but we are considering Estrogen patch to prevent bone loss since he will be on ADT for 18 mos.
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1 Reaction@kujhawk1978
Just adding estradiol to ADT greatly improves the side effects.
While the embark trial did find that Enzalutamide worked well, it showed ADT plus Enzalutamide worked best. Should also be true of estrodiol and Enzalutamide too.
Of course, you can always use an estrodiol patch along with ADT to get some relief from the hot flashes, Bone weakening and some of the other side effects.
@jeffmarc
The question of what works "best" may be a function of the patient's perspective.
As I've said before, caution on applying the results of clinical trials to one's own particular clinical data and as important, preferences on any tradeoff between outcomes such as PFS, RPFS.
Correct, in the EMBARK trial the combination of ADT + ARI was "superior" to ARI monotherapy.
The question is, is that superiority enough to overcome differences in side effects profiles?
Sometimes the decision is " good enough...!"
Example, my last treatment decision.
The clinical data indicated several possibilities, each "correct."
24 months systemic therapy + ARI, EMBARK
Six months systemic therapy + SBRT, SPORT
MDT only.
After much discussion with my radiologist and oncologist, I decided on SBRT + 12 months ADT, Orgovyx.
We would not add an ARI unless PSA did not drop to undetectable in the first three months.
At 12 months we would decide whether to come off treatment or continue.
That decision is nowhere to be found in any clinical trial or guidelines.
It's what I call a hybrid decision, combining various clinical trials, the guidelines, then deciding what to do based on my clinical data and balancing outcomes and side effects profiles.
We are at 29 months PFS.
My objective was 3-5 years PFS, minimize the side effects.
Did I make the right decision? We will never know. Did I make a good enough decision, yes...
So, my point is. the side effects of his treatment, ADT. Orgovyx, as his wife posted. are "intolerable."
He has other choices that may offer an acceptable PFS while lessening the side effects, aka, the quality of life.
For too long, in the 12+ years I've been doing this, the prevailing adage has been the side effects of systemic therapy are a result of castration, wiping out T. Now, we know that is not the whole story, ergo,,there are choices.
Kevin