My dad's cancer returned and now it’s stage 4 metastatic cancer

Hey @ihatecancer

It's a gut punch for certain. My father went through the same thing. I have the same cancer, luckily the treatment is much better than it was. I had the same treatment path as your father it seems.

I'd suggest maybe reading https://connect.mayoclinic.org/discussion/the-orgovyx-thread/

It's specific to Orgovyx (relugolix) but most ADT medicines have the same side effects. It's worked well for me. I'm about to go off of it for at least a while. So the "for life" hasn't really hit me yet. Given my family history, I may end up there as well.

It certainly does diminish your quality of life some, I won't overly sugarcoat it. My biggest side effect is really the hot flashes. Annoying and interferes with my sleep, which is not ideal. We try not to let it stop us. I work, workout aggressively, ride motorcycles, play with the grandkids. My feeling is though, if it will help me stick around to play with my grand young'ns, happy to put up with it. My goal is to dance at my granddaughters wedding. She's 8 LOL

It seems the best defense is activity. If your father is otherwise healthy, exercise seems to be the best medicine for combating the side effects. Walking, gardening, swimming etc.. all help. If he's young and healthy enough even light weight training can help combat some of the side effects.

When my father's cancer returned, he went on Lupron shots for years. The good news? he lived to be 92 and died of natural causes other than the cancer.

Best of luck to you and your family!

ihatecancer,
get second opinions. Phone consults are easy now because you have the tests already.
Your dad may be able to use bisphosphonates.
With aggressive cancers post bone cancer can be ADT resistant.
Make certain that this isn't a false positive. Even with the newer PSMA/PET false positives have been found. If the spect was discovered on a scan with the older agents. You might want to schedule with Pylarify. I'm wary of raising false hopes in this regard, so stay steady.
I hate cancer, but love that you are looking out for your dad.

Hi @web265

Thank you for your response. I’m sorry you also have to deal with this cancer. I’m happy to hear the positive news about your dad, living until 92, wow! Just shows you have some strong genes and I’m hopeful you will make it to your granddaughters wedding. 🙂

Six years ago my dad went on Lupron and I recall what he hated most was the hot flashes. That part was miserable for him. I see that your dad took Lupron. Was he also prescribed pills to take daily? It was information overload yesterday and I have to go back to see what the name of the pills are. But the direction it’s going is Lupron shots and these daily pills. Is the medication above what you take and if so are they pill you take daily? That’s great that you get to go off of it for a while! Sending you all the positive thoughts that you can stay off for as long as possible.

Besides this cancer, he is relatively healthy and 67 years old. He loves to garden but I am going to force him to start working out.

Thank you again for the response!

Hello 'IHATECANCER',
sounds like you and your dad are doing the right and best things. Best of luck throughout the ordeals.
I had prostatectomy 01/2022 but had a spot on a rib so two years of Lupron. Luckily, I got my last shot of Lupron 01/2024, two years worth. My PSA has been and is - and hope it stays - negligible. Hooray!!!
But now I'm waiting for the lousy hot flashes to subside. My oncologist says Lupron doesn't have a "Half-life" so there's no fixed time for the side effects will subside. I'm trying to wait patiently (or not).
And he said it takes time and the older you are the longer it tends to take. I'm 77 so your dad has a 10-year advantage on me; I hope he can follow the same course of "just" a couple years of shots.
Also, I started taking paroxetine a ways back, and still do. It helps reduce the flashes intensity and lower their frequency.
And encourage him to keep active! Muscle loss is another of (my) side effects. So fitness class, lawn, volunteering, and spoiling grandkids (5, 8, 19, and 21) are priorities for me.
Good luck and my/our prayers. Tell him we're all brothers in this constant fight and join us in praising the Good Lord for the skills and tech our doctors can provide.
And you are the "good kid" to stick by him and help him in this battle.

(And my GrandDaughter's wedding? - the young one is now only 5. Great idea so I'm going for it!!!)
Blessings,
Bob

That's exactly my situation — I was diagnosed with oligometastatic prostate cancer to my spine at age 56, 2½ years ago, and am on ADT indefinitely — and I feel that I'm living a pretty-great life.

The side-effects can be occasionally annoying, but the extra years are priceless.

(In my case, though, it wasn't just a speck — it was a big lesion that compressed my spinal cord and left me paraplegic for many months, so there was no doubt about the scan.)

I'm stage 4 metastasized in the bone, been on firmagon for the past year. I haven't given thought to how long I have to stay on it. With the other meds I take I'm never sure what med gives me what side effect. I put up with the side effects because the alternative seems worse. Your dad has been at this longer then myself, definitely wears on us. I hope all works out, we all have to try to get on as best we can. Relay as many stories of encouragement you read on here to him, this site has been blessing to me. Best to all.

Hey @ihatecancer
I'm fairly certain my father was simply on Lupron later in life, I'm not aware of any pills. Now the standard of care is often what is called "doublet" or even "triplet" therapies where two to three meds are often taken to get a better result.

The orgovyx is what I take daily, 120 mg pills. The belief is that this may be better in my situation because it delivers a more even dose everyday. It's fairly new so they are still learning about it. As I understand it, patients are also believed to recover testosterone levels faster when they stop taking it. Starting with my next blood test (a few weeks) and after I stop the drug, we'll start monitoring testosterone levels to see how / if it returns.

If your Dad is 67 and not working out, it might be better to start with walking and maybe swimming if you have access to a pool.....

Lupron therapy definitely does what is intended to do . A form of ‘chemical castrastion ‘ eliminates testosterone which feeds or fertilizes cancer cells . That being said muscle loss definitely so exercise is extremely important. Impotence may or may not happen but I believe it does in most cases I am waiting to hear from men who have finished the shots if they regain muscle and sexual potency doctors and nurses seem to not have the answers but hopefull this is after proton therapy did its job very minascule psa readings .I believe that prostate cancer should be given the same media treatment as breast cancer as it truly can devastate men and there quality of life and relationships thanks for this forum I hope it helps.

Zolodex works well sopping testosterone the fertilizer for PC

I can't really add anything different than what others have said.

It is likely with spread to the spine that your father may be in continuous ADT.

With modern PSMA imaging and the advances in radiation planning and delivery, SBRT may be able to treat his spinal mets.

Likely his medical team will want him on ADT and an ARI. For the ADT, lots of choices, Orgovyx is one. There are still the side effects, hot flashes, muscle and joint stiffness, fatigue, genitalia shrinkage, loss of libido...though those on this forum and others say they are "less severe." I just completed 12 months, combined with SBRT to the single PLN identified in the PLarify scan, my sensing is yes, less severe, but that's a qualitative, not quantitative judgement. Hot flashes suck.

Still, while on treatment I changed nothing, most days went to the gym, took vacations to Oregon, the Great Sand Hill Crane Migration in Nebraska, went skiing with friends in Colorado, celebrated birthdays, anniversaries, rode with my sister in the Garmin Unbound 50, a 50+ mile gravel bike ride in the Flint Hills of Kansas near Emporia,

My medical team can and does a lot for me, what they cannot do which are useful in mitigating the side effects of treatment:

Exercise
Diet
Managing Stress.

Kevin