New to this site: 22 year surviver now... - Advanced Prostate...

Advanced Prostate Cancer

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Ptclassics profile image
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22 year surviver now worried Psa 70 and rising on Xtandi I think it is time fr chemotherapy. Mestatic in lymph nodes and bone meds think I am getting close to the end will the chemo help

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Ptclassics
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14 Replies

Yes the chemo will help, a lot. you still have options. Many times chemo will allow a drug you previously failed work again. No more of that "think I am getting close to the end" talk. You need to buckle down and fight harder. Chemo took the cancer in my lymph nodes and ran it out of town. It also wrecked havoc on my four mets.

Turn the page, another chapter awaits.

vandy69 profile image
vandy69

Good Thursday Morning Ptclassics,

First let me congratulate you on your 22 years! I have been in this battle for almost six years (please see bio for complete treatment history).

After an MRI in 9/17 revealed mets had moved into my liver, I had 6 cycles of Docetaxel/Carboplatin chemo. Brought PSA down from 10.8 to .4 and liver mets smaller.

During my current chemo break, we decided to rechallenge with Xtandi which failed me after a 12 month run in 2015-16. Miracles of miracles, it has worked and brought PSA down from 1.3 to .7 and holding, with liver mets less pronounced.

Bottom line is, the end is not near for you. Chemo is not pleasant, but many current drugs to minimize side effects. You have made it this far, so keep going. Have a good Medical Oncologist who specializes in prostate cancer and carry on.

Best wishes. Never Give In

Mark, Atlanta

Ptclassics profile image
Ptclassics in reply tovandy69

Mark I am in the Atlanta area also I go to Piedmont cancer institute and Assikis

louschu profile image
louschu

Also check out the 177 lu psma 617 trials. Had my first infusion with no side effects. Cant say the same thing about chemo

Ptclassics profile image
Ptclassics

Thank you guys for the icouragment a little more on me seeds 1997 failed right away re seeded 1999 failed again rocked along with Psa of around 3 in 2011 became Mestatic started every hormone known to man fail all was on trial for high dose testero fail had botched turp surgery total inconstant was caste rated so no more lupron failed Zytiga. Had axiom scan lymph nodes and simivessels same but bone meds in pelvic area.now that I am failing Xtandi only chemo left have heard a lot of horror stories about chemo. You can see why it is easy to get down every thing failed all the doctors want to say is you are still here. They call me a success I tell them a success is when I die of something other than prostate cancer.

BrianF505 profile image
BrianF505

Bill48162 should change his name to CoachBill! Nicely done. Bullshit on nearing the end. Go CoachBill

Tjc1 profile image
Tjc1

Got to commend you on your fight. 22 years is a long time to put up with treatments and side effects. To me Xtandi caused such debilitating side effects they reduced my dose to two caps instead of 4. Chemo sounds not much worse than Xtandi. Also the chemo might make the Xtandi or zytiga work again. Not to long ago i said i would never do chemo but after reading what people have said after going through it i changed my mind and many times it works. Keep up the fight!

Tho.as

Ptclassics profile image
Ptclassics

I was told that chemo might not be as bad as Xtandi went from 4 pills down to 1 at 4 Psa went down a little at 3 it went up 5 at 2 went up 9 blood work in 3 weeks bet Psa went way up Xtandi is the worst thing I ever took

David20451 profile image
David20451

19 years since diagnosis. Xtandi for 4 years. Is focused radiation an option for you? or Provenge. I've had good results with both. Had a 4 cm large lymph node zapped.

willshake profile image
willshake in reply toDavid20451

Just started Xtandi. Didn't know you could take that long. Very encouraging if it works.

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

Come on now.... 22 years and you're folding up like a cheap lawn chair? Straighten up and fly right and kick that f&N cancer right in the family jewels. You'll gonna make it for another 22 years. You're in the end zone and you'll catch that hail Mary pass to win the super bowl.

Good Luck and Good Health.

j-o-h-n Thursday 05/31/2018 7:33 PM EDT

Nicnatno profile image
Nicnatno

I tolerated chemo well. Not as bad as people think. If I had to so it all over again, I will not hesitate to do it. Saw my Onc last week and said I continue to do well. My PSA was 0.1. He said if we had to do chemo again it would be years from now. They'll find a cure by then.

Nick- dx March 2017, PSA 415 Gleason 8. I feel great and quality of life is excellent. No sexual libido of course.

Dan59 profile image
Dan59

First Congratulations on the 22 years! You have been through a lot. I remember when xtandi was failing 2 years ago , psa went to 70, she suggested chemo, I wanted to wait, month later it was 100 and I started chemo, My psa reduced and stablized, I was able to mitigate side effects for the most part(ask for list of things to mitigate side effects). Since then I did 12 docetaxol, 3 month break and now 6 3wk cycle of jevtana , which on latest scanned showed marked decrease in pelvic metastatic disease as well as a diecrease in nodes in distant sites. I plan to retry xtandi at some point and see if the chemo reactivated the arv7 to respond to xtandi again. I plan on being here for a while. I will say that through chemo I have been able to live my life, enjoy family and grandkids, travel , leaving for England next week during chemo treatments. I wish you the best, keep us posted. There are many new promising drugs in the pipeline now. Have you ever had genetic testing for your CA?

Dan

Dx 2006, gs10,stage 4, no local therapy,bpsa148

Ptclassics profile image
Ptclassics in reply toDan59

Yes had genetic test show nothing unusual and nothing to worry my two sons about

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