My PSA went up to 40 and Doc put me on Casodex, PSA came down to 24. Two months later (still on Casodex) Psa went up to 56. Doc wants me on Orgovyx. Orgovyx has a list of side effects that seem worse than Lupron. DEATH by heart attack /stroke are disturbing. Orgovyx has ALL the other Lupron side effects like fatigue, exhaustion, hot flashes, bone pain, and on and on. Since Orgovyx is new, their history is not very long. Has anyone tried Orgovyx? If so, how are you doing. Or know anyone else who has done Orgovlyx? My limited knowledge says that ADT can cause heart problems just from lack of testosterone. I read that your heart has the highest number of testoterone receptors of any part of your body. In addition to that, it appears Orgovyx will cause "Q"wave problems that bring on heart attack.s and strokes. Anyone have heart problems from use of Lupron
ADT with Orgovyx: My PSA went up to 4... - Advanced Prostate...
ADT with Orgovyx
You are right that cardiac problems are associated with both GnRH agonists (like Lupron) and GnRH antagonists (like Orgovyx); however heart problems are much LESS with the antagonists. A good friend has been taking Orgovyx after he suffered a near fatal anaphylactic reaction to his second shot of Lupron.
You may be interested in this:
healthunlocked.com/advanced...
The gigantic sheet that comes with the bottle of Orgovyx says that it causes fatal and non-fatal heart attacks in 2.7% of patients. I saw somewhere that Lupron causes such things in LESS than 1% Murphy's law is always at work in my life. 2.7% sounds like a lot to me. Even worse, Orgovyx says that 12% get SERIOUS
adverse reactions. Fun things like kidney injury, lung cancer, hemorrhage, UTI and heart attack and stroke. I still have my prostate. I would think an RP might be better and then a systemic thing like Orgovyx if all the cancer is not killed. From Orgovyx literature, I get the idea that Orgovyx does not cure cancer. just tries to keep it in check?
You are misreading that sheet. Here is the actual data:
nejm.org/doi/10.1056/NEJMoa...
As you can see on Table 3, Major Adverse Myocardial Events (MACE) was suffered by 2.9% of those taking Orgovyx vs 6.2% of those taking Lupron/Eligard. The benefit of Orgovyx was even more pronounced among men who had a history of MACE: 3.6% of men taking Orgovyx vs 17.8% of those taking Lupron/Eligard.
As for serious adverse events, again, Orgovyx is better - 12.2% vs 15.3% for Lupron/Eligard.
At 88, it is reasonable to do what is called "watchful waiting." That means that you do nothing until pain, spinal compression, or other effects of the cancer make life difficult. At that point, you will want to take hormone therapy to help with the pain. This is a difficult decision. You may want to fill out the following questionnaire that will show you your odds of dying of something other than prostate cancer in the next 10 years:
webcore.mskcc.org/survey/su...
You cannot have an RP at your age. Your goal is not to cure your prostate cancer, but to die of something else first, while minimizing pain and suffering.
I echo what TA said and I'll add that 2.9% MACE for Orgovyx patients is about the same as people not taking any ADT. When I was on Lupron, I used to get heart surges during hot flashes. I could see the "s" lines during ECG. That does not happen on Lupron. Orgovyx does change my stool a lot but hopefully that doesnt cause any other issues. My PSA hasn't gone down as low as I did on Lupron but that might be due to time rather than the drug. There's no way to know for sure.
I took Relugolix for 1 year as part of the Phase II clinical trials. It did cause hot flashes, but otherwise I did well. When the trial ended I started Firmagon, then Eligard. After 2 years I asked if a vacation would be appropriate, so I have been been ADT-free for 1 year. If it beces necessary to restart, my preference will be Orgovyx for sure!
Is it more expensive?
I don't know. It was free in the trial.
Yes of course!
My husband is in on the trial also.
If you're on Medicare it may be because of the injection/Rx dichotomy.
I am about to start Lupron but would like to take Orgovyx instead because I have mild coronary artery disease and fight keeping my blood pressure down. My insurance won't cover it so it would $30,000 per year.
Please give me details on hot flashes. Years ago I took high doses of Niacin that caused severe burning sensations on the top of my ears and my face was flushed. It lasted for hours. How often did you get the hot flashes. How long did they last. How severe were they. Could you take anything to prevent them? Make them less severe? My other big concern was severe fatigue and exhaustion that some people get. Did you avoid that?
Hot flashes were persistent and bothersome. I had about 20 per day and each one lasted about 10-15 minutes. I always had a fan handy and ran one all night, although the hot flashes were not bad at night. I took nothing to try to lessen the hot flashes because nothing was offered. I could live with the hot flashes, but the exhaustion and weakness were more bothersome to me. I was on ADT for 2 years and have been off for 1 year, and I have not returned to what I would call "normal".
It costs me $60 a month. Insurance covers the rest for me. It all depends on your insurance.
George, what insurance do you have that is covering Orgovyx?
I have Tricare. Another guy on this Site pays $50 but i don’t know his insurance company.
Thanks George!
I pay $50/mo. My insurance company is Capital Blue Cross.
On Lupron since 11/2018. No heart or lung or blood pressure issues. But it takes prayer and a crane to get the damn thing up!
Orgovyx has slightly lower side effect profile than Lupron as noted, other side effects are the same, but is especially helpful to those with heart health history, it also has a higher efficacy in controlling T levels...
Considering it's in pill form and therefore, if adverse reaction occurs, can be stopped and subsequently the drug be removed from the patient, I say it's quite superior to injectable androgen control.
Best Regards
Prior to starting Orgovyx I saw a Cardiologist to see if I had any heart issues that would prevent me from taking the drug. I did not but the Dr. wanted me to have an echo cardiogram.
I have been on Orgovyx for about 2 1/2 months. In twelve days it took my testosterone down to 16 and reduced my PSA by .4 points. I will see my Dr. on July 1 to see how my T and PSA are doing. Lack of libido, mild hot flashes and some joint pain (might be from activity and old age) have been my only side effects so far. I do exercise 3-4 times per week and have not noticed any decrease in strength and energy. I have been trying to get my Dr. to prescribe estrogen patches to counter the hot flashes and potential bone loss...no luck so far.About two years ago I had three Firmagon shots which were painful for several days. Hot flashes were much more pronounced and it left me with two jellybean size lump around my navel area.
A pill over the shot is my preference.
I've been taking Orgovyx since the end of March, 2021. The first dose was a "loading dose" where I had to take three doses at once to start. Then one pill a day after that. Within 48 hours of that first loading dose I had bradycardia (slowing heart rate). My MO had me stop Orgovyx for two days and then restart. All has been fine after that. My side effects have been minimal, the worst being constipation which I take care of with Colace and prune juice. I have minimal hot flashes - - just a sensation of heat passing across my face for a moment or two and these episodes are rare. I do have a bit of afternoon fatigue but a quick nap solves that issue. I still do one-hour workouts every other day but I make sure I do them in the morning when my energy is high.
Because I have pre-existing heart rhythm issues I get an electrocardiogram once a month while on Orgovyx to check for QT prolongation. So far, so good - - no heart rhythm issues other than what I already had.
Because of the statistically lower heart issues with Orgovyx I wanted to do an antagonist rather than an agonist (like Lupron). My MO agreed and wrote a solid justification to my prescription drug provider (CVS/Caremark). It took three attempts at approval but now all is well - - my copay is $75.00 per month. The Orgovyx is delivered to my home by courier each month.
I believe that my original instinct to go with Orgovyx rather than Lupron, or Eligard, or Zolodex was correct. Time, of course, will tell however. Seems like all of life is an experiment.
My husband has been on Orgovyx 120 mg at night for about 4 months. His ECG showed no prolonged QT waves. His PSA went from 113 to 4.9 in about 1.5 months. Yes he has hot flashes, lethargy, but he will be having surgery in a couple of months.
I’ve been taking it for 6 months and no issues
I'm on day 25 of Orgovyx and so far heaviness in the chest with anxiety is my major complaint, with brain fog and fatigue secondary. The only other side effect I have right now are heat flashes, but that's minor. I was leary too to take Orgovyx as my lead oncologist at Penn State Hershey Med Ctr recommends 18 months on it, however, I got a second opinion at Memorial Sloan in NYC and that doc said, for my condition 6 months is recommended and that 18 months would possibly bring on unwanted side effects and the benefit would not outweigh the negatives. I've decided to try it due to the fact that the combo of radiation and ADT increases my chance of a cure considerably. We may not be in the same boat. I'm experiencing a recurrence after RP and my PSA is still low 0.2 and my Gleason and pathology were favorable. I'll keep you posted. Oh, if you go on it, make sure you exercise, lift weights, keep up with potassium (bananas, Gatorade) and magnesium. Good luck!
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