Xtandi is Working: Hello Warriors... - Advanced Prostate...

Advanced Prostate Cancer

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Xtandi is Working

Nicnatno profile image
Nicnatno
β€’49 Replies

Hello Warriors, since taking Xtandi 3 months ago, my PSA is now undetectable. it was up to 6.5 which my Onc recommended doing Xofigo. Now my Onc wants to hold off on it. my body has adjusted to it with less fatigue. Life is good. wishing everone a great summer. Keep fighting

Nick

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Nicnatno
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49 Replies
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Tall_Allen profile image
Tall_Allen

Great response, Nick!

Nicnatno profile image
Nicnatnoβ€’ in reply toTall_Allen

Thank you TA. it was scary after a couple of days with blood in my urine. That all disappeared after drinking lots of water.

β€’ in reply toNicnatno

Oh yah!

Woohoo! Glad to hear. It's an amazing thing when your PSA comes back undetectable. Mine did initially and then went up to .79 and I thought OK, that was nice while it lasted. Then it went back to undetectable again.

We started around the same time, but you got quite a while longer before you had to go on second-line ADT.

Hope things continue to go well for you.

Nicnatno profile image
Nicnatnoβ€’ in reply to

Thank you Gregg. Hope you're doing well

monte1111 profile image
monte1111

Sounds great! Started about same time? March 2017. Extensive bone mets plus lymph node mets. Xtandi 36 months August. Bone scan a week ago shows cancer stable. Psa <0.1, keep fighting Nicnatyes.

Nicnatno profile image
Nicnatnoβ€’ in reply tomonte1111

That's great. so you haven't had docetaxel?

monte1111 profile image
monte1111β€’ in reply toNicnatno

Started with 8 cycles docetaxel. (brought psa from 59.9 to about 7.0) Then, Xtandi took it from there to <0.1 as of today. And Lupron from day one.

Fight11 profile image
Fight11β€’ in reply tomonte1111

Are you castrate resistant

monte1111 profile image
monte1111β€’ in reply toFight11

No. Not yet. Believe I was put on Xtandi before it was approved for metastatic hormone sensitive prostate cancer.

β€’ in reply tomonte1111

πŸ’ͺ

j-o-h-n profile image
j-o-h-nβ€’ in reply tomonte1111

Congrats on results...... Aim High.... Shoot Low....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/23/2020 4:53 PM DST

Magnus1964 profile image
Magnus1964

Awesome, have a great summer.

Nicnatno profile image
Nicnatnoβ€’ in reply toMagnus1964

Thank you Magnus. I'm trying to mirror your success.

Kaliber profile image
Kaliber

Good for you brother ... keep it going. πŸ’ͺπŸ’ͺπŸ’ͺπŸ‘πŸ‘πŸ‘

tallguy2 profile image
tallguy2

Nice! Congratulations!

Chubby42 profile image
Chubby42

Nice one m8

2dee profile image
2dee

I'm almost having similar experience. PSA had begun ramping up to 9.1 after reaching a nadir of 1.2 from 1300+ on Lupron.

2 mos 1wk now back down to 1.1 and possibly lower yet on added Xtandi?

Now long past my "use by" date in 2018. SOC with a couple personal tweaks working for me.

2Dee

Nicnatno profile image
Nicnatnoβ€’ in reply to2dee

That's awesome

β€’ in reply to2dee

πŸ˜‚

bellyhappy58 profile image
bellyhappy58

Congratulation...I am hearten by this email as I have just started Xtandi yesterday...

Nicnatno profile image
Nicnatnoβ€’ in reply tobellyhappy58

Bellyhappy, fatigue will be your #1 nemesis. I walk every day early in the morning to combat it and it helps tremendously.

Nick

Ramp7 profile image
Ramp7β€’ in reply toNicnatno

That is the regime I employ. I'm not on Xtandi, yet. Lupron and Zytiga for me. The more active I can be, the better I feel. Although when energy ebbs a quick nap can turn it around. Great news, all the best

Nicnatno profile image
Nicnatnoβ€’ in reply toRamp7

Thankyou Ramp. How long have you been on Zytiga?

Nick

Ramp7 profile image
Ramp7β€’ in reply toNicnatno

Lupron 6 months, Zytiga 3 months. Just finished my walk by the reservoir. Of course with Mans Best Friend, loves walks too, Hot and sticky in Connecticut right now.

Nicnatno profile image
Nicnatnoβ€’ in reply toNicnatno

It's been excessive heat here in the Philadelphia area which is why I do my walks at 5:30 am. Take good care of yourself.

Nick

β€’ in reply tobellyhappy58

πŸ™May it work well for you .

TheBrain56 profile image
TheBrain56

Great news .... I’m in Australia and started the Xtandi journey about 5 weeks ago after my PSA had progressively risen from <0.5 to 6.3 across 09/19 to 06/20.

My Oncologist put me on Xtandi (with my 3 monthly Zoladex injections continuing) and the PSA dropped to 1.96 after 2 weeks and remained the same after another 2 weeks. Only issue is lethargy (can’t do a damn thing before I’m exhausted) but I’ll take that πŸ‘πŸ‘πŸ‘πŸ˜ŠπŸ˜Š

Nicnatno profile image
Nicnatnoβ€’ in reply toTheBrain56

It took 4-5 weeks for my body to adjust to the main side effect and that's fatigue. I walk 2 1/2 miles every morning and it helps.

Lettuce231 profile image
Lettuce231

Like everyone here, I am extremely happy for you, long may it continue πŸ‘πŸ»πŸ˜„.

Phil

Nicnatno profile image
Nicnatnoβ€’ in reply toLettuce231

Thank you Phil. Hope you're doing well also.

Nick

Great news! What did you take before, did you have chemo?

β€’ in reply to

I've seen your posts, so you had first chemo with lupron, than provenge, and than xtandi, right? Keeping lupron always.

Nicnatno profile image
Nicnatnoβ€’ in reply to

Correct. When my PSA shot up to 6.5, my Onc suggested I do Xofigo also but after taking Xtandi these past 3 months, he said yesterday to hold off on it.

Nick

Fight11 profile image
Fight11

Nic are you prostate resistant

Nicnatno profile image
Nicnatnoβ€’ in reply toFight11

Yes, this is why my Onc put me on Xtandi. So far so good. I hope to get years out of it.

That is great news Nicnatno. Are you on Lupron also?

My PSA is beginning to rise on Lupron - 1.8. Are additional side effects when you add Xtandi???

Appreciate your input.

Nicnatno profile image
Nicnatno

Hello tceinvestments, after 48 hours of taking Xtandi, I started to pee blood. The triage nurse told me to drink lots of water. After 3 days, everything was clear. The only other s/e was heavy fatigue which I combat through walking early in the am.

Nick

Cactus-Jack profile image
Cactus-Jack

Great news.

I’ve been on Xtandi since 2018, preceded by Provenge in β€˜18 and Lupron in 2013. PSA undetectable since. Praying it stays that way for a while.

Good luck in your journey.

Jack

β€’ in reply toCactus-Jack

πŸ™

Great news ! Rock that xtandi nick .. Lets ride this horse til we can’t no more . Peace friend✌️

Nicnatno profile image
Nicnatnoβ€’ in reply to

Thank you Scott. Feeling good brother. Hope you and the Mrs are well.

β€’ in reply toNicnatno

Thanks Nick we are AOK! Feeling good is everything! Good day πŸ€™πŸ½

j-o-h-n profile image
j-o-h-nβ€’ in reply toNicnatno

Good deal Nico..... Keep walking.... and keep posting.... have a nice summer of house arrest....

Fucking Pca and Fucking Virus....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/23/2020 5:00 PM DST

Nicnatno profile image
Nicnatnoβ€’ in reply toj-o-h-n

Salamat Kuya John. Kamusta si Ate?

j-o-h-n profile image
j-o-h-nβ€’ in reply toNicnatno

You're welcome.... I'm okay and so is Ate.... We are both under house arrest also... and a couple of months ago we decided to hide all sharp implements and silverware. (was a good idea), I have to apologize that I forgot that you're Pinoy... I can't blame it on the ADT more on old age.....

Manatiling maayos at manatiling nakikipag-ugnay…. (from google translate).

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/23/2020 10:29 PM DST

Nicnatno profile image
Nicnatnoβ€’ in reply toj-o-h-n

LMAO

Shooter1 profile image
Shooter1

On Xtandi--side affects kicked my as$. cut to 80 mg and holding at 0.1 PSA LAST 2 YEARS.

.

RonnyBaby profile image
RonnyBaby

It encouraging to see some positive results - God knows how difficult it can as we watch and wait for trends and results that offer hope.

May the good news keep coming ....

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