Please tell me everything re Orgovix - is this the latest and greatest
Hello! I am a caregiver for my 84 year old father. He is just starting this journey. His doc wants to put him on Orgovix and then start radiation. Should he add anything to this? Is this the best option?
My husband had prostate cancer 6 years ago, we when to Mayo clinic, had surgery and he is cured! I wish my dad could have the same surgery but I guess that is not an option. Thanks for any wisdom!
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Hi
We can tell you about Orgovyx but answers to your other questions require much more information about your dad's disease. (PSA, biopsy results, PSMA PET results, etc.)
Orgovyx (relugolix) is an ADT (androgen deprivation therapy) drug. Its function is to reduce the amount of testosterone available. PCa needs testosterone to grow and spread. Orgovyx deprives it of this. As an example, my T level was 450 ng/dL when I began Orgovyx. 30 days later it was 10 ng/dL. I'm sure it's close to zero by now. Side effects vary per individual. In my case, I have mild hot flashes and joint stiffness. That's it so far. Your dads could be more or less and there are ways to alleviate most of them. Best wishes to you and your dad. Make sure you care for yourself during this journey too.
Orgovyx side effects may be very difficult at that age. Some doctors feel that people in their 80s are over treated. Did your doctor discuss the major side effects of Orgovyx? How long did he tell you you needed He needed to be on it?
If he’s in great physical shape, no problem, but Orgovyx has many side effects, here are the major side effects that affect people. Not everyone gets all of them, but most people get most of them.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing
Many people get serious fatigue, It causes a beer belly Due to the muscle deterioration, but many muscles deteriorate quickly, and they must be exercised regularly to avoid loss.
A short amount of Orgovyx may makes sense, Maybe three months worth. You don’t want to have many of the side effects get to you..
Take a look at this video that discusses over treating of the elderly
I'm your dad's age and was diagnosed with an aggressive version of PC last year. It hasn't spread but there is a high risk it will if not treated. Surgery for men in their 80's is not a good idea because of the risks and healing complications.
I am on ADT and radiation which is the classic treatment path. As mjp0512 says, more needs to be known about the PSA, biopsy results, PSMA PET results, etc. From there you can assess the best way forward without over or under treating. It gets complex in the 80's because of quality of life, and individual health conditions.
Let's walk it back to the basics.
Most prostate cancer needs testosterone as a signal to reproduce, at least initially (sometimes it evolves to ability to reproduce without it; that's called "castrate-resistant prostate cancer").
Reducing testosterone, either through an orchiectomy (physical castration) or androgen-deprivation therapy (ADT, aka "chemical castration") is a first line of defense to slow or stop prostate cancer spread.
Low testosterone — however triggered — comes with a range of potential undesirable side-effects, including bone and muscle density loss, hot flushes, low energy, mood swings, weight gain, reduction in sex drive, gynocomastia (breast development), and elevated risks of diabetes, heart disease, and stroke. Many of these are similar to menopause symptoms in women, and not all of them will happen to every patient.
Traditionally, ADT has been administered by an injection every 1–3 months, which can sometimes cause short-term acute symptoms (swelling, rashes, muscle ache, flu-like symptoms) in addition to the longer-term, chronic testosterone-deprivation symptoms I listed above.
Orgovyx has all the same long-term chronic side-effects as the other ADT medications, but comes in a daily microdose as a pill, so it doesn't cause the acute symptoms that injections do, and leaves your body more quickly when you stop. And unlike some injectibles like Lupron, it starts working right away, without an initial testosterone surge that can temporarily accelerate cancer spread.
That's why Orgovyx is considered the "latest and greatest" as far as ADT is concerned, but ADT in general is not the only approach for treating prostate cancer. There are many other treatments they can add on top of it, depending on the patient's cancer status, age, health, genetic background, and (most importantly) personal choices.
I hope this helps to set some context.
https://www.ssa.gov/oact/STATS/table4c6.html
At 84 the average life expectancy is in the 5 year range. Unless there is a very strong longevity history in the family the health span/ quality of life with & without side effects need to be considered. The clinical context would be useful. You mention that you are taking care of him, That could be as little as food preparation to major illness management.
Depending on his numbers he might use Oorgovyx stand alone and intermittently without radiation or surgery.
My husband had a hormone injection about 10 weeks ago. As well, he takes abiraterone on a daily basis. The medical oncologist has him booked for another hormone injection (elgard, I think) in a couple of months. She has indicated that my husband will probably be hormone therapy for the rest of his life. I hate that idea. His libido is negligent, and the reason I worry about that is the prospect of atrophy. IF there is any chance that the testosterone comes back, atrophy could prevent sexual activity. And, of course, there are so many other side effects, muscle and bone loss, etc. I am hoping to hear that hormone therapy is not a lifetime prospect. My husband has metastasis in about 5 lymph nodes. ALSO, I asked the oncologist if we will get another PSMA in order to see what the result of radiation and hormone therapy has been. He said no PSMA until my husband has had hormone therapy for 2 years. I don't understand that. They didn't even provide the original PSMA for us; we found a private company and paid $3,200 for it. I am willing to pay again, in order to determine the results of the present treatment. Does anyone have comments or ideas on that?
When you have radiation, the cancer cells do not die right away. As a result, getting a PSA or even a PSMA pet test might be happening too soon, Before enough cells have died off.
Normally, they want to get you on hormone therapy immediately so it doesn’t have a chance of growing or spreading anywhere else while the cells that were radiated die. But then your PSA gets so low that the PS M-H pet can’t see anything.
You should be able to get a copy of the original PSMA pet test by requesting it. They are required to provide it to you. You could take it to a different doctor.
I’m not sure where you’re going for care, but it sounds like you need to get a second opinion. Going to a center of excellence or a Genito Urinary Oncologist, the ones that specialize in prostate cancer Would be the best thing for you to do.. If you can’t get the PSMA pet, they can. It would be very useful to have both pet tests so they can compare them to see what the changes have occurred.
Doing PSMA-PET scans too often won't help, unfortunately. If your husband's PSA goes low enough and stays there, then the cancer cells are dormant, whatever shows up on a scan.
It's generally believed that metastatic prostate cancer won't ever go away, though some researchers are debating that for oligometastatic (just a few metastases). The miracle is that they can often keep us alive indefinitely now, while in the recent past our outlook used to be a few years at best. I'm going to meet my first granchild in January, something I didn't think I'd survive long enough to see when I was first diagnosed in 2021 at age 56.
It is possible to have intimate relations on long-term hormone therapy — the desire can come back after a year or two, though your husband will need some assistance (mechanical or pharmaceutical) on the physical side if that includes penetrative sex.
Living without Testosterone (age 73) is quite an experience: Fatigue, hot flashes, weight gain, belly fat, hair below the neckline disappearing or becoming "peach fuzz," loss of libido and sexual function, diarrhea (probably mostly from radiation). Fortunately, some patients have few side effects while I am privileged to have the entire list. What's the trade? Testosterone 0 and PSA undetectable. I'm in my eighth month of Orgovyx and my specialists want me to take it for 24. Maybe. Exercise is the only action that seems to counteract a bit of the fatigue which is considerable.