1. < Prostate Cancer

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!)

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agustinferrari | @agustinferrari | Mar 23 7:02am

I have a similar set up as your husband, PSA 255 at 47 years old (im 50 now), with bone metastasis, no other metastasis, took the triplet therapy Docetaxel (6x) + Lupron every 4 month + NUBEQA (Darulatamide), results amazing last PSA 0.04

Currently fully working, living life at 110%, traveling, Boating (my passion) etc.

Diet its important, but, you will learn that nothing kills you, and nothing saves you (forget all those internet miracle non approved medicines / vitamins / pills ) if you want a steak every now and then, have it! For the most part (days) I satay close to mediterranean diet (Fish + Salad).....

Stay positive (not easy some times), forget that 4 years lifespan, there is people with 15+ years with stage 4 PC!

Time its is in our favor, new medicines, therapies coming out almost every year!

best

Agustin

REPLY
1 reply
heavyphil | @heavyphil | Mar 23 8:07am
In reply to @agustinferrari "I have a similar set up as your husband, PSA 255 at 47 years old (im..." + (show)
@agustinferrari

I have a similar set up as your husband, PSA 255 at 47 years old (im 50 now), with bone metastasis, no other metastasis, took the triplet therapy Docetaxel (6x) + Lupron every 4 month + NUBEQA (Darulatamide), results amazing last PSA 0.04

Currently fully working, living life at 110%, traveling, Boating (my passion) etc.

Diet its important, but, you will learn that nothing kills you, and nothing saves you (forget all those internet miracle non approved medicines / vitamins / pills ) if you want a steak every now and then, have it! For the most part (days) I satay close to mediterranean diet (Fish + Salad).....

Stay positive (not easy some times), forget that 4 years lifespan, there is people with 15+ years with stage 4 PC!

Time its is in our favor, new medicines, therapies coming out almost every year!

best

Agustin

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Well said, Agustin!

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northoftheborder | @northoftheborder | Mar 23 12:06pm
In reply to @jeffmarc "Not sure exactly what “supplements” he is taking but some herbal remedies contain small amounts of..." + (show)
@jeffmarc

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.

Jump to this post

I'll just add to that that PSA is just the smoke, not the fire, so to speak. It's not the actual problem. Suppressing the PSA alone does no good if the cancer is still there.

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surftohealth88 | @surftohealth88 | Mar 24 5:38pm
In reply to @beaquilter "Thanks, I do think we have a good team, but maybe that's just me. My husband..." + (show)
@beaquilter

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.

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I am so sorry to hear about your husband's struggle and you must be completely exhausted trying to manege his medical care as well as him grappling with process of acceptance of diagnosis :(. It is such a fine "dance" between trying to be supportive and optimistic and at the same time not downplaying situation. The good news is that he did agree to start treatment (even though with small tantrum) and that he is using supplements - he is slowly starting to accept new situation and is trying to do something about it but has hard time with feeling of "loss of control".
Second good thing is that he is open to complementary medicine and that he saw results of it working and maybe you can boost his confidence in healing by using that fact as a proof that things can change and can get better and that he should imagine how much faster he would conquer this condition if he used all that is available for him in conventional medicine, all of the new methods and medications !
Four weeks look like a "long time" but it is actually very short time for person to face stage 4 cancer out of the blue. He is doing much better than he did in the first post where he just wanted to die. He now started with ADT and maybe he will sulk for a while but he will come around, I am sure of it.
Does your medical center offer canceling for new cancer patients or something similar ?

Sending you healing vibes and hugs < 3

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