One year since Diagnosis: Hi, New... - Advanced Prostate...

Advanced Prostate Cancer

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One year since Diagnosis

Double_R profile image
17 Replies

Hi, New -- Diagnosis last July, Gleason 9, PSA 14; Treatment Firmagon + Xgeva + clinical trial with Darolutimide; 6 cycles Doxetaxel; Feb to present: Lupron+Xgeva+Darolutimide clinical trial. Initially PSA dropped to ~2; Now. June2018 PSA rising and currently ~6. Bone Mets and considering Xofigo.

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Double_R profile image
Double_R
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17 Replies
ITCandy profile image
ITCandy

Is the trial random double blind? You may not be getting the drug. I’d suggest dumping it and getting on Zytiga.

Double_R profile image
Double_R in reply toITCandy

Agreed, we'll do another round of scans and set a course for future treatment.

RalphieJr64 profile image
RalphieJr64

Kinda on the same boat. Diagnosed last July. PSA 138, Gleason 9. Casodex, Lupron, 6 infusions of Doxetaxel, (won't ever do chemo again), Zytiga-Prednisone. Now just Lupron. Had to stop everything else. PSA went from .09 now at 4.6, and starting a clinical on Monday. The thing is nothing has worked for me. I'm following my MO, and hoping for the best. I hope whatever you decide that you keep fighting until that other something starts working for you.

Ralph

gusgold profile image
gusgold

Nalakrats told us Darolutamide was the greatest thing since Gator Blood.. but like you his PSA keeps going up...now he even sleeps with the Gators...daughter sent latest pic below

i.ytimg.com/vi/6ciMyIAcWrw/...

Double_R profile image
Double_R

What's an RP? Thanks, for the response all.....

thevvy profile image
thevvy

Hi Nal .... mentioned the RP to my previous Urologist, who informed me that as I have had 40 hits (5 days a week for 8 weeks) of Targeted Radiation Beam treatment, that is not an option any more?? Something to do with scarring and tissue weakness .... This is also the guy who told me I was fine for 16 months with my PSA doublng every 3 months until it eventually got to 10 and I went to another Urologist who immediately referred me to an MO! So here am as member of a not so exclusive club.

in reply tothevvy

Still have my prostate and I also had the 5days x2months rado.... surg is no benifit to me nor was it or nor will it ever even be considered an option. For my case... No point. The horse was outta the barn I m told.

Is that the Statue of Liberty? Dear sir , you , I , and all of us ,are in the fight of our life’s ... Not an easy path to be on. I hope things can be controlled and that you can maintain the things that are important to you.. peace..

Keep rolling ! Big guy!

leo2634 profile image
leo2634

Zytiga, nuf said !!

larry_dammit profile image
larry_dammit

My only issue with a trial is I don’t want to be the one that’s not getting the drugs. Hang in there fight the battle 😡

larry_dammit profile image
larry_dammit

My father in law had prostate removed 7 years ago ,no radiation,was doctoring with a urologist/oncologist, PSA was jumping up and down ,so they did a pelvic scan a year ago and radiation , 8 weeks later wasn’t feeling well went in did a full body scan Cancer every where died in 8 weeks. Moral of this story is when you are diagnosed with cancer Ditch the urologist it’s time for the pros

gusgold profile image
gusgold

RP after radiation is a bad idea...huge chance of something going wrong including a lot of bleeding from all the scar tissue...why take the chance when the RP offers zero chance of a cure

BigRich profile image
BigRich

What is your PSA?

Rich

Bobkar profile image
Bobkar

Hope you continue to do well. My brother started that trial in March this year. Diagnosed Gleason 8 with PSA >2500 with Mets. Just has 2 nd chemo. On lupron chemo and the trial ODM-201 is the other name. Pray it works for everybody and that they are getting the drug.

Bobkar profile image
Bobkar in reply toBobkar

Sorry forgot to mention with above statement that brothers last PSA was down to 200 and will be having follow up scans next month.

A niece even number...

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