Per Request

My husband is into year 3 of this bull. He was diagnosed in June of 2016. Biopsy and RP by November came back 4+5=9 ( worst possible) stage IV, and we got the spiel “ 50% of the men with this will be living in 5 years, 50% will not”. PSA was doubling monthly and got to 21. After RP and starting Lupron, went down to undetectable. After about a year (just what they told us to expect) PSA started rising, found met to vertebrae, had radiation to that spot and started Zytiga/pred, PSA went back to undetectable. After another year (again as expected) PSA doubling monthly. New met to be vertebrae high in spine. Receiving radiation now, switching from Zytiga to Xtandi next week. We’ve been to UPMC Hillman Cancer Center in PGH. Then Cleveland Clinic, now Mayo, with a visit to MD Anderson in there for another opinion. They all say the same and always have. They don’t give us hope. In the past 3 years we have tried every diet, high THC concentrate, herbs, mushrooms, you name it!!!! I’ve become a PhD at this shit! Hahaha! My husband is a very strong willed man and I’m a great ostrich! We have been living life in the fast lane!!! Having a wonderful time in fact! He calls me “the tour director”! I do this with him as he has no patience for new technology, but rest assured that he is right here with me so please reach out to him/us any time!

[NPfisherman]

Guess they chose to not try switching you to dexamethasone from prednisone and/or adding indomethacin before putting zytiga in the trash can for now...best of luck...sometimes MO's can be hard headed about this stuff...not sure why they won't give it a try....you could get indomethacin from your PCP, and try on your own...

All the best,

Fish

[Tall_Allen]

You've really done your due diligence!

[George71]

Did you ask Dr. Kwon at Mayo? he treats olgo mets with curative intent. Also gene test to see if checkpoint inhibitors would work -- currently Ketruda and others are in trial.

[Mish80 in reply to George71]

Really? Sorry, my eyes just lit up at the word cure. My dad also has a single met. Gleason 7.

[George71]

Also -- Dr. Bob Leibowitz see video below

youtu.be/wa-WwEK1ZqA(Not working as expected?)

Your husband should ask about alternating T --- BAT -- it helps prolong remission

[Hidden]

Salud! My wife an I are into year 4 with the bull. In fact today is our fourth anniversary . We wed after dx. You are a remarkable spirit .. A great ostrich and a tour director all in one.You must wear many other hats as well ?. I know you are also a care giver . I applaud this love ..for us lucky enough to have this type of love ,we know it’s priceless. Stay in the fast lane ... no looking back . God bless you both.

[Hidden in reply to Hidden]

We have only been together since about a year before the diagnoses. We met and dated and he had many strong signs that he had been ignoring for two years!!!! I MADE him go to the doctor. We also wed post dx, but I’ll never regret it!

[Kaliber in reply to Hidden]

yes ... yes .... an upbeat tour director ... one looking out for his interest is just the kind of love he needs in times like this. he's a lucky guy to have found someone like you. good for you and hang in there , tell him to hang in there too. you never know what might pop up in the pipeline next , lots of good things in trials mode. give yourself a pat on the back and a hug from us , you deserve it .... ( share that hug with him )

[Hidden]

Hmmm sounds hauntingly familiar.. ? We were together for two before dx. I had urgency to pee and a bull head. I’m alright ..I’m alright.....oops I’m done. That the first impression .. I don’t ever want to leave her side...

[Hidden]

You’re right jacquitiani, this is pure Bull! I am new here also. I love the community, information, insight and all the great characters here. I wish you both lots of luck with the new drug.

[Hidden]

We virtually mirror your pc journey , with a little more progression. Zytiga did nothing for my husband . Xtandi has kept the cancer at bay for 9 months but has stopped working recently . The fatigue and joint pain is huge on Xtandi . I admire your tour director status !

[zenbee13 in reply to Hidden]

I echo that joint pain on Xtandi. Just debilitating in my case. You are on fantastic partner in crime! Or life Although the Oncologists offer little hope take some from me, as I am 10 years into this Bull and am also Gleason 9. I've just been very luck not to have any mets as yet.

Peace and love,

Bees

[spouse21]

Welcome to Hotel California party where you can check in but you can never leave. I love your attitude! It's valuable to hear from someone who's making the rounds while giving her guy support and some fun. Keep it coming, and don't hold back.

Husband 70 yrs (74 now) pacemaker; Agent Orange 9/14: blood in urine; DRE suspicious 11/14: biopsy G 9 (4+5), PSA: 3.32 high Gleason, low PSA, PNI involved

Lupron taken for 33 mos (currently on Lupron again after a year hiatus.)

6/15: 9 wks IMRT

9/15= .14

1/16= .093 4/16= .079

11/16=.05 (nadir)

2/17-5/17=.05

1/17= .08

2/18= .20

4/18=0.98

6/18= 3-4 bone mets seen on CT scan

7/18= 3.29

8/28= 9.0 Lupron re-started with a month of Casodex

11/27/18=7.0

Zytiga/Prednisone started with ongoing Lupron 2/9/19=4.02

[monte1111 in reply to spouse21]

Welcome to Hotel California party where you can check in but you can never leave. Very cool.

[Magnus1964]

Good to see he has a warrior princess. Don't give up. New treatments are coming out all the time. I have already gone through zytiga and xtandi. Looks like eFFECTOR is next.

[monte1111 in reply to Magnus1964]

You are on top of it sir. I learn something new here almost everyday. Thank you.

[Jackpine]

jacquitiani,

I agree with trying to see Dr. Kwon at the Mayo, he’s been treating me for 5 years, ( currently in the LU177 Vision trial with PSA going from 110 to 0.5). I’ve burned through most standard treatments and still feel this beast can be slayed we’re just not there yet.

Have fun, live life and do not let this slow you down.

[monte1111]

Sounds like you were so busy you had to turn down the role of Wonder Woman! So glad you are both having fun in the fast lane. Hoping you and Hercules can beat this bull. Enjoy.

[j-o-h-n]

So jacquitiani you think you can arrange for an all expense 6 month paid tour for my ex-wife to the Soviet Vostok Station in Antarctica ( −89.2 °C).

Meanwhile a toast to you for being the wife we all wanted....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/04/2019 8:20 PM EDT

[Molman]

Welcome to the journey. I have been going since 2015, and still going strong?? I was on Xtandy for a little while but it didn't work for long. Hope you have better luck. I started with Xofigo after that, but this also was stopped quickly. This is when my difficult period started. My wife and I went to Japan to visit my in-laws, and I spent most of the time in bed. We only just managed to get home. My airline, Finnair, initially did not want to take me. The day after I got home I was in hospital, receiving blood transfusions. In the next 2 months 4 more weeks in hospital , until I started Docetaxel. It really helped me. Now, sadly it doesn't seem to work anymore. So now waiting for the next option. Love every day to the full, like there is no tomorrow. GOOD LUCK