What life extending questions would y... - Advanced Prostate...

Advanced Prostate Cancer

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What life extending questions would you ask the top oncologist. If you were me.

Costarica1961 profile image
16 Replies

I have a long awaited appointment with Dr beers at Ohsu tomorrow, and I don't want to miss a single possible question that may improve my chances of living llonger. I was diagnosed with a gleason 9, 4.5 yrs ago, then a rad prostectomy, salvage rad to follow. 2 yrs of zytiga and xtandi followed by investigational trial, harpoon. I had 5 sessions unsuccessfully, my PSA rose. to 243 then docetaxal docetaxal which was unsuccessful Psa rose again, lots of side effects, and then diagnosed with 4 Mets, followed by 20 and then paved, I have had palliative rad several times. Meanwhile starting cabataxal and carboplatin, going on 6th round. Then This last weekend I went to the hospital via ambulance due to severe side effects, although my labs were relatively normal, I Received infusions for anemia and a dose of morphine, as well as magnesium. Although Psa has gone down to 98 from 243, and bone scans indicate some new progression and some stability in some areas, Which leads me to a possible date with bombesin trial for advanced pca, that's the hope I have left to my knowledge, is there any unturned rock I am overlooking or other treatment options. Are there any other viable treatments for someone in my boat. My attitude is still very good, and my youthful attitude and fitness make me a young 59.7 I still work part time and golf often, although I pick and choose my days now. I want to live as long as possible, and I realize that means always being my own advocate, as well as staying current on the latest and greatest treatments, and never surrendering.

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Costarica1961
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16 Replies
Tall_Allen profile image
Tall_Allen

Any info from biopsy of metastases?

Costarica1961 profile image
Costarica1961 in reply to Tall_Allen

Not yet that had to be rescheduled, until later this month. The first one showed the braca 2 gene and not much else useful, according to onc.

Tall_Allen profile image
Tall_Allen in reply to Costarica1961

So PARP inhibition is a good idea for you. What about cell histology and IHC?

Costarica1961 profile image
Costarica1961 in reply to Tall_Allen

I will suggest parp inhibition, and will find out about cell histology and IHC. I Did mention parp to my other onc and she brushed it off by saying its common in other cancers such as ovarian or breast, but not a common go to for prostate cancer, although I will clarify with Dr beers because her answer seemed incomplete and somewhat uncertain.

p3d1 profile image
p3d1 in reply to Costarica1961

She is not well informed if she said that. Having a BRCA2 mutation gives you a definite option of a PARPi. I got 9 months plus with Rubraca and there are guys on here who got nearly 2 years. Worth a shot.

GP24 profile image
GP24

You could discuss Xofigo therapy against bone mets.

Costarica1961 profile image
Costarica1961 in reply to GP24

Ok that has been considered. But will broach again.

lewicki profile image
lewicki

Can you go to Germany or India for LU-177 and AC-225? Get LU-177 in the US?

Costarica1961 profile image
Costarica1961 in reply to lewicki

The investigational drug may have disqualified me, I will double check. Thankyou.

dmt1121 profile image
dmt1121

Dr. Beer is a a somewhat "no-nonsense" guy who tells it the way he sees it. Be prepared mentally for his lack of bedside manner. He does have a sense of humor with some digging. He should have read your history and if you come in with some good options to discuss (Unfortunately, I have none to offer.) that you have gotten from Tall Allen and other good sources, he will go through them with you.

Good luck and keep us posted!

Costarica1961 profile image
Costarica1961 in reply to dmt1121

Actually I have been seeing Dr beers for a couple years,, this most recent meeting today has been long awaited because it has been a few months and my cancer has progressed. I really like him and his staff, I was involved as well with a clinical trial a few months back at OHSU that was unsuccessful unfortunately. I hope your doing well with your cancer. It's always nice to chat with a fellow oregonian.

dmt1121 profile image
dmt1121

I am glad. I do hope that you arrive at a good treatment option!

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

Be detailed...........take notes..... (bring a scribe?)

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/05/2021 10:43 PM EST

Costarica1961 profile image
Costarica1961 in reply to j-o-h-n

Funny guy

Doseydoe profile image
Doseydoe

Perhaps you could ask if he is OK with you recording the meeting on your phone for later comprehension, 😎DD.

Costarica1961 profile image
Costarica1961 in reply to Doseydoe

Good idea thankyou

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