Oygavyx Problem?

[NecessarilySo]

I have been on Orgavyx now for a few months and my MO discovered some irregularities with my EKG and bloodwork. I'm not sure the cause of the problem but Orgavyx literature warns against patients taking it with a long QT interval. My QT interval was 488ms (over 480 indicates problem) and my EKG showed a LBBB (Left Branch Bundle Block) which also indicates a problem. I have not been monitoring EKG much and was unaware of any signs of a problem. So I stopped Orgavyx per MO direction and will retake EKG after a week. Could be weight gain, (a few pounds), hypertension (160/100), and high glucose (107), are side effect of the Orgavyx. Any comments are welcome and thank you.

[tango65]

Prolongation of QT is a complication of ADT and it could be associated with other ADT meds besides Orgavyx.

healio.com/news/cardiology/....

accessdata.fda.gov/drugsatf...

[NecessarilySo in reply to tango65]

Hmmm. Increased risk of sudden death. I'll watch for that.😵 Thanks Tango.

[tango65 in reply to NecessarilySo]

You are welcome. Best of luck!

[MateoBeach in reply to NecessarilySo]

I have heard that a universal symptom among advanced cancer patients is a deep abiding desire not to be dead. 🤗

[Hidden in reply to MateoBeach]

Is that from the book "Tales from the Grave"?

[NecessarilySo in reply to MateoBeach]

Yes, Mateo. Also, conversely, an intense appreciation of life, I suppose. Also an acute awareness of time.

[Boonster]

Thanks so much for posting this, NecessailySo. My RO wanted me to try three months of Orgovyx, but drop it if and when I wanted to. After reading about the side effects, I elected not to take it at all. Good luck, and please keep us informed.

[MateoBeach in reply to Boonster]

Have you found an option with less side effects that you have chosen? I can’t think of any (that work) except for estradiol.

[NecessarilySo in reply to MateoBeach]

Will meet with MO later this week. Don't know what will be MO opinion, but first impression is take care of the immediate problem first. My PSA is stabilized at <0.1 for the past few months so I'm ok for a vacation. Perhaps that is my solution for now.

[Christopherg in reply to MateoBeach]

Can you advise what the benefits are for estradiol?

Thank you so much

Chris

[MateoBeach in reply to Christopherg]

For you, since you are on ADT per your profile, estradiol could be used topically (patch or gel) to protect bone mineralization/ strength and to help greatly with ADT SEs such as hot flushes, fatigue, mental fog and depression etc. There is no increased cardiovascular risk seen in trials vs Lupron ADT. One 0.40 md/day patch changed every 2-4 days is probably sufficient for this. (Vivelle or Dotti brands recommended.)Estradiol patches can also be used alone for ADT, without Lupron etc. In higher doses: 4 patches worn at once with one changed out each day. Gynecomastia can often occur with this and can be prevented with tamoxifen 10 mg.

[HopingForTheBest1]

I had read that Relugolix had possibly heart protective benefits. Clearly not your experience, unfortunately. Thanks for the warning.

[NecessarilySo in reply to HopingForTheBest1]

It seems to be just a few cases per 1000. Not a common thing I guess.

[Farmer3419]

My husband is due to start orgovyx this next week. They have scheduled him for an appointment with a cardiologist for a base line ekg since they said heart problems were a side effect. I thought orgovyx was better than other ADT meds but maybe not.

[NecessarilySo in reply to Farmer3419]

When you get EKG results look for long QT interval. If okay, then Orgavyx is probably good but keep an eye on it. I liked the pill form compared to the injection form of treatment. Also if things go haywire, it might lead to a pacemaker. It's not the end of the world. Some people live decades with them. Also watch high blood pressure. Also it might be the Xtandi giving me hypertension. This is all like a complex mystery.

[NecessarilySo]

I want to update on this just to let people know what I am finding out as time goes by. I have stopped Orgavyx for a few weeks now and the hypertension still remains but thanks to tango's post (first reply) I became aware that ALL hormone therapy drugs have side effect of increasing blood pressure. With that and the fact that stopping Orgavyx did not have much effect in reducing my hypertension, I stopped Xtandi also a few days ago and I am finding that my blood pressure seems to be reacting quite well in response to the elimination. It still is not totally conclusive but my blood pressure does seem to have dropped down to the area of 130-140 over 75-80. This is near normal levels, but I would have to add that it is under Lisiniprol medication which lowers the blood pressure for temporary periods. My problem with QT interval at this time is still unresolved but it is possible that it is due to Metroporol medication which I have been taking since 2008. The effect of Metroporol is to lower heart rate and that it does effectively, so it is somewhat of a guess that it is causing a longer than normal QT interval.

The other problem, LBBB, might be caused by the stent which was placed in 2008. This is at this point another guess on my part but it would make sense to me that a stent would cause a slight reduction in the size of the blood vessel in which it was placed, thereby causing a minor blockage.

So in general it is a bit premature but my guess is that the Xtandi was the primary cause of the hypertension, Orgavyx might have added a bit to it, and other heart drugs I have taken for a long time may cause the other abnormalities. Bottom line seems to be that I am fine, no more succeptible to sudden death than I have been for the past ten plus years.

Also, having temporarily stopped Orgavyx and Xtandi, I am okay with the cancer fight because of my low PSA at this time. Previous breaks in hormone therapy have not led to significant increases in PSA for six or more months, so that is what seems to be in store for me. My MO will probably strategize monitoring and a sort of see-saw pattern in which I alternate between hypertension control and PSA control.

[Kevinski65 in reply to NecessarilySo]

You were on a beta blocker I believe? Did you have neuropathy in your feet? How was your weight gain. I'm on Xtandi and lupron for 7.5 years. I was 2.5 on lupron alone. I also am on zometa, than gabapentin, 3 antidepressants ( desipramine, Wellbutrin and prozac) I have multi-nodular hyperthyroidism which I take tapazole and atenolol for , so I don't know what's causing my hypertension. If I take everything I don't have much hypertension. I was diagnosed in 2012 , stage 4, m1, psa 31 at diagnosis. Took a truck load of different supplements, and I'm like 9.5 years out. The fatigue, numb feet, memory loss, muscle loss and other common side effects prevail. I also now take celebrex. That's a lot of stuff whistling through my fatty liver. Lol

[NecessarilySo in reply to Kevinski65]

Yes, beta-blockers. Struggling with weight gain, hypertension. Hang in there. Try to ignore it all. Enjoy life.