Got some answers for stage 4 prostate cancer

Jeffmarc is the man to talk to, he ll show up soon. A veteran prostate cancer patient of 14 years.

Thank you for the update, and best wishes from everyone here.

Just a thought, from a layperson with no expert knowledge. It might be worth asking them about the modern ARSIs (the -lutamides). I've been on Apalutamide + ADT since 2021 for my stage 4, and I've seen no progression yet. The TITAN study using Apalutamide + ADT as a first-line treatment for metastatic castrate-sensitive prostate cancer (mCSPC) failed to reach median overall survival in its 52.5 month run (over half of participants — some of whom had already had metastatic cancer for a while — were still alive after 4 1/2 years, which is a very promising result).

Zytiga (+ Prednisone to deal with the side-effects) is still a helpful and very common treatment, but it's a bit on the old side by prostate-cancer standards. It could be that it's the best treatment for your husband's case (and I know some oncologists still prefer to stick to the older, pre-TITAN approach of starting on Zytiga first and progressing to the -lutamides only after the metastatic cancer develops castrate resistance), but also, it's something that doctors and insurers sometimes default to just because it's much less expensive (it's out of patent), so it doesn't hurt to ask *why* they chose it at the next appointment, just to make sure.

I also insisted on strong treatment up front. I don't know what would have happened if I hadn't, but I ended up with 60 gy of radiation to my prostate (close to the maximum) and 20 gy to my spine after the tumour was surgically debulked, and the oncologists now think that might have made a big difference for my prognosis. If your husband wants to fight (a hard choice, I know) it's important to tell the oncology team, over and over if needed, that he wants to "throw the kitchen sink" at it. You're both active partners in this, and it's OK to push for what you want. But if not, that's OK too, of course.

I am new here, also representing my husband. I am still learning about this disease and can not be of much help but I just want to send you best wishes for future treatments and may they be outstandingly successful and bring PC completely under control, /\. I think that perhaps your husband is still in the phase of disbelief and shock and I am sure that fighter in him will be soon awaken. In the meantime maybe you can buy this book , I found it very useful and even inspirational since it gives ideas of how to help combating cancer with vitamins, supplements and nutrition. It is written by doctors and it has chapters that cover cancer prevention as well as what to do during cancer treatments and after. The title of the book is: "How to Prevent and Treat Cancer with Natural Medicine". Sending virtual hug < 3

Degarelix is The worst way to get ADT. The doctor has to give you a shot in the stomach every month. I think they do this because they make the most money off of it. You can get a Lupron Shot every three months or six months and not have to go back so often. It would be even preferable to get Orgovyx, A pill you take once a day.

You say your Gleason Score is all fives. The Gleason score consist of two number, If both are fives, then you have a Gleason of 10 the highest. Is that what it shows for you just two fives or is it five and four

You need to get genetic testing to find out if I could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you. The link for the free test is

Prostatecancerpromise.org

Don’t check the box that you want to have your doctor involved or it will greatly delay the test. Certain genetic problems like BRCA2 Have drugs that are specifically helpful for those people.

Don’t believe the numbers they give you for longevity, They are wrong so often it’s incredible. Most doctors won’t even give you that guess.

It does sound like you’re getting the right treatment to start with. Too bad you didn’t start this as a new conversation because more people would probably see it and reply to it.

Hey Jeff,
It is a new conversation here (at least I posted it as a new post, but maybe I did it wrong)
I've posted a few weeks ago and I think you replied too, anyways.
Yes the Gleason GROUPS were mostly 5s, the scores were 8-10, mostly 8 and 9s and groups 5, a few were 4s.
The ADT shot is just a one time BOOST, then he'll switch over to a pill.
The doctor did mention price and cost with something but I don't remember what it was and changed his mind on certain things too, first he said most likely NO radiation, then did a prostate exam and said it was very abnormal, large and hard so probably radiation would get involved months down the road.

PSA came back in the evening and it has gone down a bit, from 251 to 198 BUT some liver enzyme is 300 where normal is 40 I think, I'll have to look at the chart today. He's taking Ivermectin and Fenbentosol and have read it helps PSA but can spike liver enzymes because dead cancer cells goes thru the liver and then it goes into overtime in a way.....I think Milk Thistle helps?
It was just something he tried after the first PSA result and waiting 5 weeks to see oncologist.

The doctor did say that with my husband's situation they used to say "months left" now they say years, that 50% make it 4 years now, of course it depends on a lot of factors.
He's rather "young" statistically, he's fit and eats right- now SUPER healthy, and doesn't have any other comorbidities.....

My husband’s PC was diagnosed in 1993, prostatectomy done. Thirty years later, he is still with us, but now at the end of the battle. Every day, every treatment was worth it, injections, radiation, prescription drugs, etc. PC is treatable for many years, so don’t ever give up! We didn’t, and I’m glad.

Agreed about Firmagon/Degarelix. It doesn't affect survival prospects (Orgovyx/Relugolix works the same way), but those big monthly Firmagon injections come with very uncomfortable acute side-effects in addition to the normal chronic ones. I noticed a big improvement in my quality of life when I switched to Orgovyx a year ago.

The tricky thing about Lupron (the other alternative Jeff mentioned) is that it causes an initial testosterone flare-up before it starts going down, and the OP's husband's medical team might have considered that risky for his situation — just a guess.

In the U.S., Firmagon is much less expensive than Orgovyx (just like Zytiga is much less expensive than modern ARSI treatments), so again, it would be good just to confirm — politely and constructively — that cost isn't the main reason they're putting her husband on the Firmagon injections.

Hey bea, for what it’s worth, please exercise caution with unproven treatments like Ivermectin, etc.
I’m not saying that I myself wouldn’t give it a shot AFTER conventional treatment shows no positive effect, but ADT can spike your liver enzymes as well and with the Ivermectin, he could possibly cause liver complications - the LAST thing he needs!
At least tell your doctors he is taking it and listen to what they recommend. Best,
Phil

The doctors sequence of giving you Degarelix first and then moving onto the pill is a little strange. What puzzles me is that if he’s going to the pill (Orgovyx) It doesn’t have the flare problem so he could start off with that right away. So many people in here have been getting those Degarelix Injections for a very long time, This is the first time I’ve heard of it only being done once. If he didn’t give you that first, he would have to give you biclutamide Pills for two weeks before Lupron.

As for Gleason scores, The highest number is the only one that counts as far as treatment goes. If his highest combo is 4+5, then he’s a Gleason nine, If it’s 2 fives then he’s a Gleason 10. Having a lower score on some cores isn’t relevant.

As for future radiation. The consensus among doctors these days is that the prostate should be removed for people that have had initial spread to other parts of the body. They want to eliminate the prostate as a cause of future cancer spread. When I say removed, I mean either by radiation or surgery, but it’s usually makes more sense to do radiation when it’s already spread.

While his PSA is high ADT, plus Zytiga, Plus chemo is probably going to bring him down to an undetectable PSA. There’s no telling how long this will last, But no doctor can give you a definitive date. Development of new drugs has been pretty rapid, So by the time these drugs stop working for him, there may be new things out to extend his life. The rest of us out here are hoping for exactly that happening.

"The doctors sequence of giving you Degarelix first and then moving onto the pill is a little strange. "

Yes, it does sound strange. Perhaps the doctors want to get started right away, without pausing to wait for insurance approval for Orgovyx (???)

As I understand, in the U.S. Orgovyx is considerably more expensive than Firmagon, so maybe it requires special approval from the OP's insurer? Just guessing -- I don't know a lot about U.S. health insurance.