Update on Xtandi and me

[ppulatie]

Hi all. Just thought I would drop a line to let people and especially newbies know that they can be hopeful for the future.

Just had latest PSA while on Xtandi for 21 months now. PSA value now at .21. Started at 8.5 in Nov 2019 when Casodex failed.

Been 5 years on this journey at Stage 4 with 3 bone mets. Currently using Lupron, Zometa and Xtandi. When first diagnosed, never thought I would make it this far.

Secret is to get a great team of docs that you can trust and will listen to you. After all, you know your body better than anyone else.

Looking forward to my next goal of 10 years so I watch all the next phases of Marvel movies. (Set goals and strive to reach them is a real bonus.

On that note, time to start dinner prep. Breaded fried chicken filets, mashed potatoes and gravy, and fried butternut squash.

Hang in there and enjoy life.

[Hidden]

Congrats on the great response to treatment! Hope it continues. The dinner menu sounds fantastic. By the way, since your PSA is so low, you can start bragging about your diet like others do in this forum.

[ppulatie in reply to Hidden]

Lol, am not worried about diet at all. Gotta have some vices since sex is out of the question. Oh, beer tonight with dinner also. 😃

[Kaliber in reply to ppulatie]

I like your style warrior… you can take a breath now, relax and concentrate on that bucket list ( food ? ) family and QOL … for guys like us , it doesn’t get any better than that does it.

Same here lupron xtandi zometa….. 34 months so far at psa <0.1 and looking for 34 more yayahahahaya. Starting psa 1400-1600.

Congratulations brother ❤️❤️❤️

[ppulatie in reply to Kaliber]

Was lucky with a starting PSA of 80.8. Was avid politics follower but it upset me too much. So I just said to heck with that and no longer pay attention. Did wonders for my mental attitude.

[Kaliber in reply to ppulatie]

Yea….. we’re …. All of us here …. way past the point in life where we should anguish over any of that kind of stuff. Even if you are healthy it can drive you nuts. I’m not saying it’s not important or being dismissive…. But we have loved ones, QOL and ourselves to think about now. We , all, can lay less important stuff aside and concentrate on “ today “ with our loved ones instead.

Like I said brother, I like your style.

💪💪💪👍👍👍❤️❤️❤️

[Magnus1964]

Now is the time for you to be thankful for all your many blessings.

[ppulatie in reply to Magnus1964]

Every day I wake up

[Boywonder56]

Dig that menu......keep on truckin

[ppulatie in reply to Boywonder56]

Food is about all the enjoyment now except when grandkids come to visit.

[Shooter1 in reply to ppulatie]

Grand kids are a kick... Youngest daughters son started his first day in school today... Eldest grandson up here just bought his first car... '86 Jeep. had death wobble. Jacked up front end and left wheel had 3 inches of slack in bearings... replacement on order.. right side only about 1/2 inch wobble. Showed him and a friend how to adjust them and it is fine now... Kids don't know as much about mechanics as we used to. Great to have a grandpa around to show them a thing or two....

[ppulatie in reply to Shooter1]

Mine are grown. 19 and 24. Waiting for great grandkids, but not too soon.

[Hidden in reply to ppulatie]

Got to see my granddaughter today. She's just barely over 1 now.

This morning she came over to me and put out her arms to be picked up. That really brightened my day up. She is so cute, so glad I made it to see her.

[ppulatie in reply to Hidden]

Sweet!

[GreenStreet]

Great post. Very encouraging. Bon appetit

[ppulatie in reply to GreenStreet]

Came out great! Next is spaghetti tonight.

[Haniff]

Great response 💪

Stay positive and enjoy life.

Haniff

[ppulatie in reply to Haniff]

Thanks! You too!

[larry_dammit]

5 year anniversary here as well , 4 3/4 years on Xtandi and ADT treatment. Loving every moment I have here on earth. Keep up the fight warrior 🙏🙏🙏

[ppulatie in reply to larry_dammit]

You too brother warrior!

[SeosamhM]

Congrats and great post ppulatie! We need positive stories like this!

I freely admit that I'm a child of the height of the comic book era (as I see it) in the 1980s (and collecting "vintage" 1970s comics) when many of these Marvel story lines were conceived. Seeing how the MCU story arc continues (into infinity, apparently) is a motivating factor to live!

“It’s not about how much we lost, it’s about how much we have left.” - Tony Stark aka Iron Man

'Nuff said and Excelsior! - Joe

[ppulatie in reply to SeosamhM]

My exposure was in the very early 60's. Wish I had all those vintage comics back. Would have some real money in the bank account now.

[E2-Guy]

Hi Pat, I was 61 when diagnosed and the doc that did the biopsy came into the examaning room a few days later to give me the 'good' news! He looked at me and said, "Ron, you have the real deal!" His reply when I asked him how much time does he think I still have was, "Five to ten." Well that was 17 years ago and here I am still finishing out condos in Thailand.

May you still be enjoying life at least 15 years from now! Ron

Working on a condo bathroom

[Woodstock82]

What side effects have you noticed from the Xtandi?

[ppulatie in reply to Woodstock82]

The normal. Brain fog. Hot flashes, tired continuously. Aches and pains occasionally. Could be worse though.

[catsup]

stay positive.going on my 7th year on Xtandi. Like some of you guys enjoying the grandkids,good food, wine and an occassionel glass of single malt. Stay safe you all!

[ppulatie in reply to catsup]

Most of the time I forget I have this dreaded disease. That is when you know you are doing well mentally.

[Jp2sea]

Yum. And congrats for the progress.

[Muffin2019]

Congrats, you give us all hope as do all the responses, the dinner sounds delicious and enjoy the beer, fight on warriors.

[ppulatie in reply to Muffin2019]

We get too caught up on the negative, so I just try to focus on the positive.

[Tjc1]

Good to hear !!! I have had grest lick with Xtandi. I was on lupron for 10 years before it failed and Xtandi for about 2 and a half years. Due to the covid i missed my lupron shot and figured i would see what happened. That was october, over a year ago. Im still below 50 in testosterone but its inching up and so is my PSA. But PSA is still under 1 like .56 . Oncologist wants me back on the lupron. Im thinking of castration though. Lupron side effects i believe are real. Im going to meet my urologist next month for a second opinion. Like you, i eat what i want but practice portion control and i have shed 30lbs being off the lupron. I live life as well as i can, lots of other factors to consider also. This time im not so anxious about the PSA spike.

[ppulatie in reply to Tjc1]

Lupron alone lasted about 2 years for me. With Casodex, another year. So now the Xtandi. Love that it is taking so long to work down to undetectable. More to look forward to with each blood test coming up.

Gonna keep up with Lupron. Even with the weight gain I experienced. Not gonna do a "New Coke."

[Survivor1965]

I’m on the same three drugs you are for 55 months now but dx’d in 2012. Gleason 9 4+5 bone and lymph mets, spine, ribs, femur, frontal bone. Today PSA undetectable and mets inactive. Living life and having fun. Had a $50,000 penile pump installed 3 yrs ago, it it a game changer and keeps my wife of 32 years happy. Don’t give up on sex.

[ppulatie in reply to Survivor1965]

We are proof that there is life after diagnosis of Stage 4. Keep up the good work!

[monte1111]

Great news. Except for the squash. I'm 48 months Xtandi plus 24 months chemo. (And Lupron, etc) Extensive bone mets stable as of July. Psa 0.1 What a wonderful world.

[ppulatie in reply to monte1111]

I always remind myself that 30 years ago, I would be "expired" by this time. Certainly a wonderful world.

[BonoVox1]

good to hear, I'm on Xtandi as well, if you want try adding 300 mg of ubiquinol twice daily, ALL people over 50 should be on this, I dont drink anymore but have a beer for me God bless.

[MateoBeach]

Mashed potatoes AND butternut squash? You are living the life. “How we spend our days is how we spend our lives.” What is on the menu for today? Cheers

[ppulatie in reply to MateoBeach]

Leftover spaghetti. Always tastes better the next day.

Butternut squash is from a neighbor whom I am helping on her lawsuit against a VA lender for violation of the Qualified Mortgage Rule. She only eats the blooms. Also get tons of cherry tomatoes from her and I give her peaches off my tree.

Today is see the oncologist day. She is very happy with my progress to date.

[KAgolf]

My kind of dinner!! AND CONGRATS on good response! hope for continued success

Is Zometa the only bone med. you have taken? did you consider Boniva or Prolia?

looking for best bone med to avoid bone loss and rebuild bone mass--my husband has osteoporosis in 1 hip and osteopenia in other hip--I know Lupron/Eligard can be bad for bones. NONE of the cancer docs even mentioned protecting the bones, so I mentioned to primary doc and he put hubby on Boniva.

would appreciate your input and all others too. At this point he is only on Eligard and no other meds besides Boniva for this. T2b N1 M0 and after proton the "suspicious" iliac nodes are no longer seen

THANKS--everyone here is so helpful

[ppulatie in reply to KAgolf]

Only tried Zometa for the bone mets. It has been working fine for 4 years now. Get it every 3 months along with Lupron. Only get a flu like symptom for a couple of days after taking it.