Firmagon Injection gone bad!

[USAFproudmom]

Husband got his first hormone injection yesterday to begin treatment which will include 45 Radiation Therapy sessions. He got the first shot, everything seemed ok, got the second shot and BP dropped like a rock. Could not wake him up. They called 911 took him to the hospital. He is home and doing OK now. He has an unusual situation; had Carotid Body Tumors back in 2002-this is extremely rare and the surgery to remove them causes nerve damage to the nerves that control heart rate and blood pressure. We never know what drug or situation is going to affect him adversely and even most doctors don’t understand and won’t listen to us because of course , they know better (sarcasm). This is why we opted not to have surgery to remove prostate. Problem now is how do we treat the cancer? I hear there is an oral drug for hormone therapy but no way we can afford it?? We are scared and have a million other stressors in our lives right now. He also has kidney disease and only one kidney. Gleason 7 (4+3), negative bone scan PSA 5.2.

[Tall_Allen]

The other choices are Lupron (injections) or 150 mg Casodex (bicalutamide) pills. Bicalutamide costs $52/mo on GoodRx.

[Mike404]

Orgovyx is an oral med, similar to Firmagon. That might be an option. You can also get four months free while you try to get insurance approval. Check out the Myovant customer support program.

I also had low blood pressure, but from Cialis and Flomax. Is that part of the program?

For 4+3 the recommendation is six months ADT, however, it isn’t required. I’m not sure if these were one month shots, but that alone will help, even if you stopped now. The ADT will help kill the tumor and “mop up” any cells that escaped. But we’re talking about improvements in cure probability at the margins. The radiation is the main event.

[CAMPSOUPS]

You "hear" it is an expensive drug. Please check with your MO to submit for insurance pre-authorization of Orgovyx (an oral hormone drug) as insurance will cover in certain circumstances such as inability to tolerate the other standard hormone injectables.

[Cooolone]

Orgovyx is FDA approved, question is your copay and there's help with that, even from the drug maker itself. But it is the same drug basically that caused your issue. Or was it a reaction to an injection itself?

What to do, indeed... I find it interesting how Oncologist know what they know, and what they don't. We look at them and think they'll know this worldly knowledge of all things, and every single reaction or interaction of possible issues and co-morbidities... Unfortunately, that's not true. They know what's in their wheelhouse, and that's ok too. As long as they're honest about it. It is annoying as well, that other specialist, staying in THEIR wheelhouse, won't know anything about cancer... So there are gaps, and finding a particular oncologist who is familiar as an aside with another condition is possible, but very difficult. No real offer of help, just sounding out my thoughts and sympathies in your regard.

As noted above, there are other drugs, other options which preclude surgery. Finding the right mix which works for the multiple conditions bat once is the conundrum.

Best of luck and regards!

[PingPongGuy]

I had issues with my Firmagon injections, not as dramatic as your husband's, and I talked to my oncologist about switching to Orgovyx. At first, his office thought it would be too expensive, but I ended up getting it for a minimal co-pay. And I did four months (not six), and the results have been good, though it's only a year later.

[USAFproudmom]

Thank you all for your feedback. Urologist is switching him to Orgovyx and there is a program that will make it $10 copay. They just have to go through a special pharmacy and it will be shipped to us. They are taking care of setting it up for us.