Advice : There are so many... - Advanced Prostate...

Advanced Prostate Cancer

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Oct18 profile image
29 Replies

There are so many knowledgeable people on here who know so much about treatment options that I would like some advice and feedback. I was dx October 2018 Gleason 9 Mets to hips 2 in ribs and 1 on lower spine. So far my treatment has been lupron, zytiga, and prednisone. I had scans and bloodwork today that I’ll get results Monday from Dr. The Dr’s plan is radiation to my prostate and possibly all other spots depending on what scans show, hopefully nothing new. I am being treated at Duke. I’ve read so many posts with info on other medications, chemo, etc... are there any questions I should/could have for my Dr on treatment options? I know diet won’t cure anything but I have chosen to eat a healthy vegan diet with lots of fruits and vegetables. I exercise 4 to 5 times a week. I’m 47 years old and PSA has gone from 43 in October to .19 in December (praying today’s results are even lower) sorry for the long winded message. I’m just a little anxious. Thanks in advance for any advice on treatment questions

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Oct18 profile image
Oct18
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29 Replies
Tall_Allen profile image
Tall_Allen

It sounds like a good plan. Is that Dr Armstrong?

Oct18 profile image
Oct18 in reply toTall_Allen

Thank you TA! Yes I’m seeing Dr Armstrong. I’ll have radiation locally under Dr Armstrong’s guidance I live about 1 1/2 hours from Duke and he knows my local oncologist who is less than a mile from my house.

Oct18 profile image
Oct18

Thank you! 53 is still young but your right, more young men seem to be getting this. October 18th ironically was my wedding date 1996 - (divorced 2009) and same date 2018 was told I have stage IV cancer......so yes, a date I can’t forget. Thanks for the words of encouragement. I’m a single parent of 3 and this forum can be therapeutic. I hate others have this and pray for everyone, but it’s comforting to hear from those fighting this.

in reply toOct18

Whoa , How old are yours kids? That must keep you active.. I think pc has been in men since the beginning . We’re just the new kids on the block. Just my sweet wife and i ,seems minute compared to raising up three. A cancer psychologist asked me at the end of a 40 minute question period “ Do you have a reason to live , and what is it?” I said my wife .. You have so many ... three that need you. in particular.. You will adjust and live along time to be with them . Many prayers to you and your children.. Scott🌵

Oct18 profile image
Oct18 in reply to

Yes, 3 that need me for many years. Daughter turning 16 next month and twin boys turning 11 in a few months. I feel I've been doing really well, but just like for most of us when we have the long Dr. visits and scans etc.... we get reminded of our fight.

in reply toOct18

That’s a full house of fun I assume.. 16 +2x11 + dad = full house .. You must get lots of love..... Single dad is admirable ..deadbeat dads abound... get in some cardio brother , we need to watch our heart health .. ..don’t let oct18 stay as a stigma rather a awakening to what’s important ... feeling well mentally spiritually and of course physically .. 16 and driving ,,hoho that’s fun.. take it easy papa.

Oct18 profile image
Oct18 in reply to

Lol, yes lots of love here and some craziness. I’m definately getting the cardio 4-5 times a week. I don’t let that date worry me. It’s just what came to mind when I needed a user name since it’s when I got “the news”. Prayers to you too. Having a supportive wife i’m sure is a big help to you.

in reply toOct18

My dog is lulu and I take tak-700 a defunct test adt drug .. Thus lulu700..My wife and I wed 4 yrs ago with tubes out of my kidneys and a foley for a yr and a half. What a honey moon! I had lived the bachelor life and was go go go for $$$ , never slowed down, until APC put me in my place.. You are so young , you will live along while... you ‘ve got a job to do . Love those kids .. This is a huge lesson for them at an early age. Teach them how to deal with adversity now. ... Peace to the captain of the ship.. ✌️

Oct18 profile image
Oct18

Thank you Nalakrats! I responded earlier but the message is gone now.

Shooter1 profile image
Shooter1

Just a little anxious. You must be remarkable...we all get that way or worse before every scan or test or treatment. Good luck. Drs sound on top of things.

Oct18 profile image
Oct18 in reply toShooter1

I won't know the results until Monday so I'm sure the anxiety will rise though I'll keep praying for peace.

Magnus1964 profile image
Magnus1964

All great advice, you might try adding Vitamin D3, 1000 i.u. daily. Prostate cancer patients tend to have low D levels.

Oct18 profile image
Oct18 in reply toMagnus1964

Yes, I've been taking Vitamin D3 for a few months since the Dr. recommended that. Thank you

Roberthale7318 profile image
Roberthale7318

Good morning !

I have been seeing Dr. Georgia at Duke since August 2018. You’re in the right place at the right time !

Oct18 profile image
Oct18 in reply toRoberthale7318

Glad to hear. I'm very thankful to live so close to Duke.

NPfisherman profile image
NPfisherman

Hang tough, young man....You're strategy sounds much like mine...I eat wild caught salmon and organic chicken though, and lots of veggies especially tomatoes and broccoli, and get to the gym about 3-4x a week...your PSA is coming down...that's great...

Are you sleeping ok? That was a challenge initially for me...I take melatonin for sleep.... I am on Zytiga, Lupron, and prednisone also... You have years and the science is coming...enjoy the heck out of those kids... have some fun...

All the best,

Don Pescado

Oct18 profile image
Oct18 in reply toNPfisherman

Thank you so much! I know I may eventually get back to chicken but for now I feel good going vegan. Thankfully I have no problem going to sleep. If I could just not get up a couple of times at night to use the bathroom that would be better. I go to the gym four to five times a week too. I used to complain about working out, now it’s like my drug....it helps me feel better.

NPfisherman profile image
NPfisherman in reply toOct18

Zytiga may be the culprit for the nocturia--peeing at night....same here--get up 2x a night... over time, it has gotten easier to get up, go, and go back to sleep... You have a great game plan....enjoy the day...

All the best,

Fish

Oct18 profile image
Oct18 in reply toNPfisherman

Same here, sleepwalk to the bathroom.......and I just got my results from my bloodwork from yesterday.... .02 PSA so very happy and thankful to God for that!!

NPfisherman profile image
NPfisherman in reply toOct18

Fabulous news...congratulations...a great day for you, indeed...

Fish

Oct18 profile image
Oct18 in reply toNPfisherman

Thank you, and thanks to all for the advice!!

in reply toOct18

Ooohhh yahhh! Keep rolling low numbers ... 😎☝️

MelaniePaul profile image
MelaniePaul

From what others have said here, I take it that you are in good hands at Duke. I think what I would say to you is take a lot of time in the meeting, slow it down so that you can explore everything, and ask Dr. Armstrong to give you all the options he sees for you and the next steps to take from where you are now. Good luck and post what he says, okay?

Oct18 profile image
Oct18 in reply toMelaniePaul

Will do, thank you!

Oct18 profile image
Oct18 in reply toMelaniePaul

I met with my Dr. at Duke on Monday to go the over the results of my scans and bloodwork. Again my PSA is .02 which I'm very thankful for. Five or so mets showing up on the CT scan that I'll meet with the radiologist tomorrow to discuss radiation to the prostate and possibly all mets showing (only 1 more met showing than my scans 6 months ago). My liver enzymes are pretty high so I have to stop taking Zytiga for 2 weeks and have blood checked then to see if that helps. If so I'll start back on a lower dose and will keep monitoring my liver. As far as why chemo has not been suggested yet for me, the explanation I got was that Zytiga provides the same benefits for me as chemo would and it is less toxic. I feel very good in the care of Duke and Dr. Armstrong. He also encouraged me to continue exercising and eating healthy. Not necessarily vegan, that is just my choice. I was back at the gym on Tuesday and thankful to God, I feel prayers are being answered.

Lagovista2018 profile image
Lagovista2018

It looks like things are going good. My husband was dx at 45 with Gleason of 9 Mets to lower back. He’s on chemo now just finished his 5th round they have him on carboplatin and etoposide for 3 days every three weeks. The carboplatin and etoposide the first day and they etoposide the next two days. He’s on Trelstar and casodex for hormones other than nausea and fatigue he’s doing good. Still goes to work every day. He has one more round of chemo then they will radiate his prostate and he will be on immunotherapy. We absolutely love his oncologist here in San Antonio and his oncologist at MD Anderson. We’re also a little anxious because he gets a CT scan after his last treatment in April so far we have gotten great results and his cancer has gone down. I know this disease is not curable but we’re optimistic that we can control it for many many years

Oct18 profile image
Oct18

Yes, many years....while hoping for a cure. I wonder why some have chemo and for others like myself, it has not been brought up. Maybe it's for down the road for me or I'm not a candidate , not that I'm looking forward to it. Good luck and prayers for your husband.

j-o-h-n profile image
j-o-h-n

Well October 18th We mentioned here that a Pee cup or an empty Gatoraid bottle near your bed would help. Just relieve yourself right away and jump back into bed and hopefully back to sleep. I don't know if your Doc can give a prescription for Flomax to control the urge. As far as your children are concerned your doing a bang up job raising them. I will give you two stars ⭐⭐ (I'm the only one who is eligible for three).

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/29/2019 5:30 PM EDT

Oct18 profile image
Oct18

I was just prescribed oxybutynin for the frequent urination. We’ll see what that does over the next few weeks. Thanks for the two stars, lol

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