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My father died shortly after starting treatment with Orgovyx
Hi all - thanks for reading. My father had prostate cancer (gleason score 3+4). Doctors recommended orgovyx + radiation. He began orgovyx on October 27th and radiation shortly thereafter. On November 15th he was admitted to the hospital with pneumonia (or likely pneumonitis) and was also experiencing AFIB...both of these were way out of character for my dad. He was the most active 72 year old I know, still jogging, kayaking and hiking regularly. Outside of the prostate cancer (which had a great prognosis) he had few health issues. Anyway, within a few days his health deteriorated to the point where was admitted to the ICU and had to be placed on life support. He spent 2 weeks on a ventilator before dying of cardiac arrest on December 4th.
To me it just seems too coincidental that he started taking such a powerful drug and was dead within weeks. Looking at the FDA's adverse event database (FAERS) for orgovyx, both pneumonia and AFIB are listed as events others have experienced, albeit rare. There are however a shocking number of deaths (~10 or so per month) listed on FAERS for people taking orvoxyx, although details on these deaths are sparse. I was also able to dig up some research on pubmed.gov linking ADT therapies in general to pneumonia/pneumonitis as well as heart issues. Proper treatment for ADT-related pneumonitis involves steroids, as antibiotics have no effect as the "pneumonia" is not bacterial. Sadly my father was not started on steroids until too late as his doctors failed to see a link between the ADT therapy and whatever was going on inside of him.
Not sure exactly where I am going with this post....I guess I am curious as to whether anyone else has loved ones who may have experienced something similar. I'm just trying to make sense of a very difficult situation. Also - just worth noting - the benefit of orgovyx to my dad was small (3% chance of the cancer recurrence with orgovyx vs. 6% without it). I would encourage others to think about this relatively small benefit and carefully weigh it against all the side effects. My family did not properly assess these risks, and we are paying the ultimate price for it. I understand that these drugs save a lot of lives and that's why they get approved despite the side effects. But being on the losing end of that calculation feels pretty terrible. Definitely do your own research and make sure the benefits outweigh the costs for your personal situation.
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So sorry to hear about your dad. I'm 70, and had a single 4+3 and two 3+4 so was Intermediate Risk (IR), Unfavorable profile, no metastasis. I did SBRT but was on the fence about ADT. The three things that helped ME work the risk/reward equation in favor of ADT where: 1) My genomic profile came back High Risk, 2) While there are many studies that show little advantage of adding ADT to the treatment plan for Intermediate Risk PC patients in general, those studies don't differentiate between between IR Favorable and Unfavorable profiles so we don't really know what the beneficial differences are in that spectrum, especially in the extremes of that continuum, 3) Orgovyx is available and is a fast acting, daily oral medication with a much lower CV risk profile.
That said, I've finished my RT and have been taking Orgovyx for two months now and planning on 4 more months. Blood work indicated T was almost zero at the 15-day point so it's doing its job. Some hot-flashes, fatigue, aches, etc., but all manageable. I exercise daily and drink an occasional beer or glass of wine and eat healthy-- just like I did before PC diagnosis. As others have said, this is an individual decision and is best made by you with the expert advice of a solid medical team. Best wishes.
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3 ReactionsVery sorry for your loss. If you are up to it, (or if anyone knows where exactly to find this) can you please point me to the article that showed “3% chance of cancer recurrence with orgovyx vs 6% without”? I searched online but I can’t find it. Husband post prostatectomy. Oncologist prescribed 12 months orgovyx starting just before the radiation. Year of treatment now nearly completed with significant negative impact on quality of life (the word profound seems to fit) with this medicine. Urologist disagrees with oncologist (saying need another year of treatment).
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1 ReactionClarification too post: radiation & orgovyx for biochemical recurrence (prostate bed).
I think that the 3% vs 6% was the cardiovascular risk profile difference between Orgovyx and Eligard/Lupron.
Best wishes for successful tx.
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1 ReactionThis was something that my dad was told by his doctor. May have been specific to his situation. Not sure to honest. Best of luck to you .
Update: One year after Proton SBRT my PSA level is 0.63 from 13.4 pre-treatment. I have yet to discuss this latest test with my RO, but I remain satisfied with my progress and do not regret foregoing ADT.
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1 ReactionGlad to hear about your success without ADT. I just finished 28 SBRT treatments along with a 4 mth Eligard regime. I had a failed Hi-Fu at University of Chicago 2 years ago, so I decided to try Radiation . I reluctantly agreed to the ADT based on two different Dr's suggesting that Gleason 7, 4+3 ( Unfavorable) PSA 10, warrants it. I hate the side affects, they are life altering, chemically castrated, up at night 4-6 times consistently, hot flashes, fatigue and aches. I will never take another Eligard shot. I have no metastases, had no issues or side effects from SBRT, just wish I had done it your way as we seem to have the same numbers....Thanks for reading my rant
Can I ask what your Gleason score was? Age? Favorable or Unfavorable? Thanks...
jyeager31,
very sorry for your profound loss.
Thank you for the generousity of your warning. You'll never know the number of people made safer by your post.
Your analysis is always good for thought. A few days ago you posted a link to a boatload of clinical trials. As I was getting into them I lost the website would you repost it? Many of the studies were on people with nearly my pc profile.