Big decisions, huge consequences. - Advanced Prostate...

Advanced Prostate Cancer

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Big decisions, huge consequences.

Costarica1961 profile image
23 Replies

My psa has soared to 361 from 91 and previously 6. My alk phos is 700 plus i am feeling some pain in my kidney region and perhaps, liver area. I am considering a quick trip abroad for Lu 177, the fda approval not quite settled state side yet. Very scared this might be my swan Song. Just finished 2 nd carboplatin round yesterday. The blood draw was for the previous round. Maybe give chemo more of a shot? or pivot. I am running out of answers, although i still got a lot of fight and want to live as long as possible, I am only 60, With lots of responsibilitys and zest for life. Any thoughts or suggestions.

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Costarica1961 profile image
Costarica1961
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23 Replies
Tall_Allen profile image
Tall_Allen

There are some trials in the US:

prostatecancer.news/2020/08...

Magnus1964 profile image
Magnus1964

Have you had any scans to confirm mets?

Costarica1961 profile image
Costarica1961 in reply to Magnus1964

A couple years ago mets poped up. Recently a month ago no new but psa was 200 points less.

Magnus1964 profile image
Magnus1964 in reply to Costarica1961

Has your doctor mentioned other ADT drugs, zytiga or xtandi?

Costarica1961 profile image
Costarica1961 in reply to Magnus1964

Took both , zytiga worked 18mos x didnt work. Clinical trials only option lu 177 or ac 225 maybe thankyou

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Costarica1961

I'm now on a trial at Weill Cornell in NY using a triple therapy of Ac225-J591+Keytruda immunotherapy every 6 weeks+Xtandi daily. 10 weeks so far. Having bone and CT scans and blood work on 10/28, then a Ga68 PSMA scan the following week. Hoping for the best.

I understand that Ac225-J591, an alpha particle, is much more powerful than LU177, a beta particle.

lewicki profile image
lewicki in reply to HopingForTheBest1

Wow . That is a great trial. Good luck and please let us know your success.

CAMPSOUPS profile image
CAMPSOUPS

Is this the infamous PC cells dyeing off from chemo showing up in PSA?

Costarica1961 profile image
Costarica1961 in reply to CAMPSOUPS

From your words, to gods ears.

I sure hope so.......

CAMPSOUPS profile image
CAMPSOUPS in reply to Costarica1961

Some reassurance from your Oncologist and some scans would be nice.Yea let's hope for the best.

Costarica1961 profile image
Costarica1961 in reply to CAMPSOUPS

Scans set up in two weeks thankyou

What variant is at issue here from the biopsy? I read somewhere the doctor said it was aggressive, but what was it? Most say Dr. Sen in Delhi is the most convenient. Heidelberg has the experience.

George71 profile image
George71

Costarica1961,

Look into getting a gene mutation test to see if you have any ... Keytruda has highly effectuve for some here.

Nous profile image
Nous

really sorry to hear of your challenges Costarica1961 ... perhaps checkout envita.com ... best wishes ... Nous :)

Vsahay profile image
Vsahay

Hello sirIs it possible to rechallenge lu psma therapy after going through any other line of treatment(such as chemo/hormonal) if the lesions are still psma avid?

larry_dammit profile image
larry_dammit

Never give in my fellow warrior. 🙏🙏🙏🙏

MateoBeach profile image
MateoBeach

Trying to get your overall picture from prior posts since you don’t have a summary in your profile. Understand you are mCRPC and NEPC. And you mentioned that you do not have strong PSMA expression on a recent PET scan? If that is the case then you would not be a good candidate for Lu177 nor Ac225. Would be unlikely to benefit. Comparing PSMA avidity to FDG PET scan could clarify that.All of the chemo cycles can possibly restore some responsiveness to previously failed AR drugs. So perhaps consider re-trial of Abiraterone + pred or dex? Otherwise look for any appropriate recruiting clinical trials to get access to the latest weapons. Best of luck, we are pulling for you.

Costarica1961 profile image
Costarica1961 in reply to MateoBeach

I have not done the psma test yet not sure where you saw that. I am still doing chemo carboplatin. Hopefully it will show a lower psa in two weeks if not Lu 177 will be a strong possility.

MateoBeach profile image
MateoBeach in reply to Costarica1961

I thought I read in one of your prior posts about that. Sorry. You should arrange to get a PSMA PET scan such as with Pylarify. It will clarify if you are a suitable candidate for Lu177 treatments or not. And will give a baseline so you will be ready for the treatments. If you chose to go abroad for it they will want to review it as well as labs etc., before scheduling treatment. Nice if that is still a strong option after the chemo. More arrows in your quiver.

RCOG2000 profile image
RCOG2000

At my latest visit with my radiation oncologist he indicated to me that approval looks like it may be coming along in the next few months for the LU 177 in the USA nothing specific in writing or anything like that but I was considering a trip abroad and I’m now deciding to wait a bit longer although my disease has not progressed as rapidly recently as yours So I am feeling like I have a little more time before something must be done

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

Sorry no medical advice............ just my prayers for you....

j-o-h-n Friday 10/22/2021 11:28 PM DST

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

Thankyou prayers back at cha

Costarica1961 profile image
Costarica1961

I am in need of help to understsnd the visa process, as well as if theres a Quarantäne etc i am very interested and my oncologist says i am a good canidate for this treatment. Although i have not done the psma avid test yet. Please help me with all the steps in the process to get there, Thank-you in advance

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