Anyone have experience with Triple (Triplet) Therapy?

Hi Anne. I am a wife in a very similar situation. The details are in my bio. One thing I can say to you that might help is that it is all very shocking and frightening and confusing at first but those feelings can change as time goes on. I have found that learning as much as I can is super helpful because I can talk with the doctors comfortably, support my husband, and get better at accepting the reality of the situation. This forum is great for both learning and support. There are other partners and wives (and gentlemen) here who have been very generous sharing their knowledge with me. They will do the same for you.

@canadaanne Glad to hear he's on Orgovyx (Relugolix). It became available in Canada only in early 2024, and it was a huge quality-of-life improvement for me switching from an injectable (Firmagon in my case) to the daily pill.

In the U.S., Orgovyx is very expensive — around US $3,000/month — so insurers sometimes try to steer patients away from it unless the patients put up a fight. In Ontario, Orgovyx is priced competitively with Firmagon — about U.S. $215/month — so private insurers or the Ontario government have no issue paying for it.

Because Orgovyx is so new, though, it still doesn't get prescribed too often, just because it's not on Canadian oncologists' radar yet. I was lucky to have a very up-to-date Canadian oncologist, and it sounds like your husband has been too. Everything he's getting sounds like newest/best treatment.

@northoftheborder
$3000/mo for just the relugolux? Whoa!
All covered here and I was curious about it but hadn’t looked - just do thankful that treatment is available and that we don’t have to worry about paying for it.

@ucla2025 thank you. Sometimes I am still in the “shocking, frightening, and confusing” place, but learning more is helping me/us already.

@northoftheborder
$3000/mo for just the relugolux? Whoa!
All covered here and I was curious about it but hadn’t looked - just do thankful that treatment is available and that we don’t have to worry about paying for it.

@canadaanne
Great choice of drugs. I’ve been on Orgovyx (relugolix) and darolutamide for about three years. They work real well together and Darolutamide has the least side effects of any equivalent drugs. I was on one of the equivalent (ARPI) drugs, Zytiga, for 2 1/2 years and it has a lot of side effects.

You say you’re having a bone scan, but you should make sure that you have a DEXA Scan which is a bone density scan. Orgovyx (ADT) weakens and thins bones. The DEXA scan checks your bone density and gives you a good benchmark for what happens in the future if you’re on ADT for a while.

Some information on ADT drugs you may not be aware of

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I run on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

There are other solutions to hot flashes. If you’re husband has a lot of problems with them come back and ask we can let you know what they are.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium and vitamin D taken daily helps keep your bones strong. Ask your doctor about this.

Some people gain a lot of weight from ADT. I have never gained any weight while on ADT, And I’ve been on it for eight years. . I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times.

@jeffmarc To avoid any confusion for @canadaanne , I just want to note that a bone scan (for cancer lesions) and a DEXA (for bone density) are two different procedures that would be scheduled separately, possibly at different facilities.

The bone scan is the critical one right now, but I agree with Jeff that it's good to get a bone-density scan (DEXA) as well in the next few months, to establish a baseline.

@northoftheborder
Yes, the requisition is in for the bone density test is in, just no appointment for that yet.

Bone density test is coming up too.
Our oncologist seems to really be on top of things and others have said he is one of the top oncologists in the country.