My father died shortly after starting treatment with Orgovyx

jyeager31: I am really sorry about your Dad. There are no words that truly helps with the pain. I would add one more note to your last line regarding research. The decisions to be treated are complex and research does help. I have been to five top notch radiation oncologists each with MRI, Biopsy and history. Two suggested radiation and ADT and three suggested radiation only with two to three different types of radiation suggested intimating all outcomes are the same as are the side effects of each machine. Sometimes its your best guess as a patient and as a doctor.

I am very sorry for your loss. Thank you for posting. The treatment decision for PCa is daunting.

@jyeager31 : That is heartbreaking news. I'm very sorry for your loss.

The leuprolides (Lupron, Eligard etc) have a similar profile to Orgovix regarding side effects. Orgovix does have the benefit of rapid action both on and off as regards testosterone reduction and recovery because it is an oral rather than an injected medication.

I am also 3+4 and am undergoing Proton beam SBRT but I have refused ADT. After careful study I believe that the benefits accrued in the addition of ADT are insufficient when compared to what I believe are the underestimated dangers of side effects for patients; particularly those with pre-existing co-morbidities with unfavorable intermediate localized PCa. I made the final decision after reviewing the results of a PSMAPET scan showed negative metastasis.

I'll write more on this subject at the completion of my radiation therapy after observing my PSA. Perhaps others will take heed of your caution in their own cases to their benefit. Thank you for sharing your story.

I am 3+4 and have undergone SBRT with the ViewRay (MRI guided radiation) and have finished ADT using Orgovix almost 2 months ago. I chose Orgovix as it was touted as eaiser on your heart, faster acting, and allows testosterone to return faster. My side effects included: intense hot flashes/cold flashes, legs/feet/hands sore. which after 2 months have not stopped at all. I am very very tired of this situation and not sure I would have gone the ADT route had I known what I was to go through. Everyone experiences these therapies differently so you never know what awaites you. I got three Urlogy doctors and one Urlogy PA's opinions and all of them said to do the ADT as my genomic test showed that I was High Risk.

@stebro: My husband is also 3 + 4 and will be undergoing proton beam therapy (5 day course) His RO has advised him to accompany PBT with ADT (injection every 6 months for a total of 3 injections = 18 month ADT therapy) He does not want to do the ADT I am wondering how your therapy went w/o the ADT Are you pleased with your decision? After much research, we are inclined to agree with your opinion on the underestimated dangers of side effects of ADT.
Thankyou for any insight.

@jyeager31 Thankyou for sharing a very difficult and personal experience. I am so sorry for the loss of your dad. Your post is an important one for all of us on this dealing with prostate cancer.

I have not regretted my decision. I feel fine. In seven months, my psa has dropped from 13.85 to 2.7. It may drop further. I have another test scheduled in six months. If my PSA begins rising again, particularly if the rise is rapid, I may reconsider. My RO is comfortable with my progress. So far, so good ...

Good luck and God bless.

Sorry to hear...the decision on treatment is complex and involves a wide variety of factors, some clinical, some personal.

I am a study of one...I and my doctors know that as a high risk PCa (see my clinical history) that I have peaked behind the door of death by PCa, no thank you. So, this is kind of my guidance to my medical team - “ it is important to remember that not dying from prostate cancer is a good thing, however as long as treatment is not the cause of mortality…!”

I did develop AFib after an 18 month stint on Lupron. My cardiologist did not want to see any connection with the ADT, rather, he attributed it to my "moderate" drinking. I threw the BS penalty flag when he said I had to stop. Like your father, active, biking, playing basketball, hiking and skiing in the mountains, swimming, lifting weights...We had to do a cardio conversion, tried various medications, finally, did an ablation. Problem solved.

This go around, the 4th, I am on Orgovyx for six months in conjunction with SBRT to the single PLN identified in the Plarify scan. SES, hot flashes, fatigue, muscle and joint stiffness, albeit mild, usual genitalia shrinkage. I see my medical team, oncologist, radiologist, primary care and cardiologist every three months, no CV issues. Plan is 6-12 months, stop. As you can see from my clinical history, Orgovyx has done its job, T from 608 to undetectable. Hasn't changed my life in terms of playing basketball, biking...did a 50 mile gravel ride with my sister recently.

I would change nothing about my clinical treatment history, aggressive PCa requires aggressive treatment. Well, when I did SRT in March 2016 I wanted to add six months of ADT and extend the treatment field to the entire PLN system based on data emerging from clinical trials and what Mayo had on where recurrence was with BCR after prostate surgery. My medical team dismissed it, saying no long term data. When my PSA continued to climb after SRT, my radiologist looked at me and said, well, you were right...Since that momentous failure, I have made the decision on treatment and it has never been the "standard of care" which is population based and generally historical data driven.

I do believe that when going on treatment, one needs a medical team - urologist, radiologist, oncologist, primary care...and a cardiologist is part of that team given the SE profile of these drugs.

Kevin

If you do research, there are studies that show that for intermediate risk prostate cancer like 3-4 there is no or a very very slight advantage of BCR or Overall survival of having any ADT if you are over 70 years of age. As for AFIB I got it at 73 even though I exercise, and my heart and arteries are in great shape according to my cardiologist. I asked him how I got it and he said, "You got old".

This is an amazing post from you given the circumstances and delivered in a very balanced way.
Very informative and much appreciated.

Without input from individuals like you, it is so easy for large corporations to spin their own narrative to often desperate consumers.