Got some answers for stage 4 prostate cancer

Posted by beaquilter @beaquilter, Mar 17 2:17pm

We had our first Urology Oncologist appointment today at UNC.
Finally have a "plan" after the PSA test started it all 5 weeks ago!
PSA was 251, CT scan showed it spread to lymph nodes, Biopsy showed gleason groups of mostly 5s, PSMA PET scan showed in lungs and bones and lymph nodes near lungs as well.
My husband is 55 and in otherwise good shape, eats right, exercises etc.... has always done that, though now he's super strict about it! No sugar, no carbs, he's thinking about cutting out fish and going completely vegan! (He only ate salmon this last month and an AWESOME "salad" with cilantro, bean sprouts and other things. He's also taking supplements now.
So here's the plan:
ADT injection (Degarelix) soon, either this week or next.
ADT pills (Zytiga with Prednisone)
Later Chemo, 6 sessions 3 weeks apart.
Radiation is maybe later, they are not sure yet, they want him to start with these things first and see how it changes levels.
They did say that what used to be "months left" is now years, that about 50% make it 4 years.
Emotionally we're kinda numb, my husband says he feels apathetic.
He was against the hormones a month ago when it was all new to us, but now we know there's really no other way, Pluvicto will only come into the picture if the cancer is testosterone resistant, so they're guessing 18-24months, but will keep testing everything often.

I'm hoping the ADT injection will make him feel better (pee less often) and no side effects or minimal. Then it'll give him the mental energy to fight! Physically he's in good shape, but mentally he wants to give up already and die.
We have a good church support and friends who are praying for us and checking in, and telling him to fight for himself, for me and for our 4 kids (ages 9-22!)

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

kujhawk1978 | @kujhawk1978 | Mar 19 1:56pm

So, off to a good start with triplet therapy.

If no financial toxicity involved with Orgovyx, would definitely discuss with my medical team. Advantages:

it doesn't have the flare that Lupron does
faster to castration
higher sustained castration rates
quicker recovery when stopping though with his clinical data, not sure intermittent therapy is in the cards
No visits to the doctors office to get the shot(s).

Same side effects though, no T is exactly that.
It does have a lower CV side effect profile

@northoftheborder is right about the lutamides...

@jeffmarc is right about life expectancy, the advances brought about by medical research make those guestimates out of date. More and more I see where in situations such as his, taking out the mother ship (prostate) is part of reducing the tumor burden.

I'm with @heavyphil on the out of the box treatments, he is not there, trust the science.

In my experience, best ways to mitigate the side effects:

Exercise
Diet
Managing stress

all in moderation...

Thought for the day…”Diligent monitoring and proactive treatments have served me very well. When your cancer advances after your original treatment, it's a lifelong hobby.”

Kevin

ecurb | @ecurb | Mar 19 3:53pm

In reply to @kujhawk1978 "So, off to a good start with triplet therapy. If no financial toxicity involved with Orgovyx,..." + (show)

You can keep your hobby, I want to dis own my PCa hobby

kujhawk1978 | @kujhawk1978 | Mar 19 4:27pm

In reply to @ecurb "You can keep your hobby, I want to dis own my PCa hobby" + (show)

Trust me, I would prefer another hobby!

paul28 | @paul28 | Mar 21 4:44am

In reply to @jeffmarc "Degarelix is The worst way to get ADT. The doctor has to give you a shot..." + (show)

My only experience with ADT is with ORGOVYX, one a day pill, take it as you wish, with or without food, its all good.
I could not imagine ADT by any other method, means, as compared to all the others.
I am tolerating ORGOVYX really well now that the hot flashes have become seldom.
PAUL

graybeard46 | @graybeard46 | Mar 22 8:05am

In reply to @paul28 "My only experience with ADT is with ORGOVYX, one a day pill, take it as you..." + (show)

You’re strong wife to be able to even send the post you did , our prayers are with you and family, these sad stories are getting too common.

thmssllvn | @thmssllvn | Mar 22 9:48am

I just started ORGOVYX for less than week. Although moderate ethanol consumption may be tolerated I plan to avoid it. I may have seen a comment here that HOT FLASHES may be related to ETHANOL consumption? Someone had noted that the liver function tests ['LFTs'] can be elevated with ORGOVYX. As ETHANOL is is denatured in the liver it seems reasonable to avoid it considering its known ill effects save relaxation and sociability.

proftom2 | @proftom2 | Mar 22 11:44am

I am five years in on my Advanced Prostate Cancer Journey. Year one was horrible, painful, misery beyond belief. Much thanks to an oncologist who broke the news to me “That I can’t ever be cured, I can only be treated.” That was it, I wanted out, must have Google searched death with dignity every hour after that moment for a year. Thank goodness for ease dropping.

The oncology unit at my local hospital is very ease dropping friendly. I overheard my oncologist talking to a friend on her cellphone about her dad’s prostate cancer and why she sent him to the big university hospital because they’re the best. Took me about an hour to call that university hospital and arranged and consultation. Within minutes of that consultation, I changed my care team to them. Smart move.

My new oncologist focused my cancer journey on three cancer topics (1) Quality of Life, (2) Survivorship, and (3) Wellness. My last four years have been a treasure. These three cancer topics give me meaning, purpose, and Joy. Amazing how good this life can be.

beaquilter | @beaquilter | Mar 22 4:21pm

In reply to @proftom2 "I am five years in on my Advanced Prostate Cancer Journey. Year one was horrible, painful,..." + (show)

Thanks,
I do think we have a good team, but maybe that's just me.
My husband finally reluctantly yesterday got his first ADT shot (Firmagon)
He had hurt his leg at the gym earlier in the week, so he had almost limped in there, today he's miserable and in pain, both in leg and stomach.
He won't take anything.
He almost didn't take the ADT at all because he was afraid of the side effects and permanent damage it could possibly do.
He's been assured that this lasts for a month and he's also had a month to mentally prepare for it.
He had wanted to postpone it because his supplements got his PSA down from 250 to 200 in a month, but the hospital told him that stage 4 in the bones and lungs so much, he's at risk of fracture and they told about what could happen with that and it would delay treatment (put the fear of God in us) he just didn't care! He wants to do his own thing, and I plead with him that he doesn't have that kind of time to "play" with supplements! It would be different if it was early stages......
Hopefully his mood and attitude will change.

jeffMar | @jeffmarc | Mar 22 5:10pm

In reply to @beaquilter "Thanks, I do think we have a good team, but maybe that's just me. My husband..." + (show)

Not sure exactly what “supplements” he is taking but some herbal remedies contain small amounts of substances similar to hormones which may artificially reduce your PSA levels, making PSA tests unreliable.

gbrickler | @gbrickler | Mar 23 12:21am

No giving up! We all can beat this. I have a similar case to his. Diagnosed 2 years ago (after 8 months of missed diagnosis by a major California University Medical Center-don’t get me started!). Gleeson 9, metastasis to lymph nodes and bones. Immediately started chemo (6 sessions 3 weeks apart) and ADT with Lupron and Yonsa. Side effects, yes but drive through them with nutrition, exercise and most importantly family support and prayers. Sounds like he has all of these. My 6 months scans showed regression of the metastases, 12 month more improvement, 18 and 24 month lesions gone. So he can beat this. Side effects are better than the alternative without treatment. Greet every day with joy, get out and exercise, smell the roses and celebrate life. Praying for you.