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Castrate resistant

Fight11 profile image
12 Replies

I want to share my husband story with you. He was diagnosed with a Gleason score of nine and a psa of 27! They try to remove the prostate it was fused to the rectum so he had 42 rounds of radiation which was last September they had finished. He just had a six month follow-up in February his PSA was 0.1 and he just had another follow up on July 6 His PSA was 10.49 the doctor had called me and said he was castrate resistant now I’m sorry mind you he was on Lupron the whole time. He had a bone scan last week and it showed some metastasis to the sternum the right shoulder and the right hip so they’re putting him on Zytiga!! I can’t even tell you how petrified I am what is going to happen. Could any of you share some encouraging stories about being castrate resistant and the timeframe and what treatments have helped?

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Fight11 profile image
Fight11
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Pleroma profile image
Pleroma

It is pretty standard to start Zytiga when PSA is rising while on Lupron.

If Zytiga does not bring the PSA down, some would say at that point he is castrate resistant.

PS. You need PSA tests done monthly or every two months. Five months is way too long between tests. He should have started Zytiga much earlier.

If you can afford $250, I would highly recommend genetic testing for identifying possible gene mutations for which there are some promising options.

Fight11 profile image
Fight11 in reply toPleroma

The Dr said he was castrate resistant because the psa went up on the Lupron alone

tango65 profile image
tango65 in reply toFight11

If his testosterone was less than 50 and the PSA was going up and it is above 2 , his cancer went from castration sensitive to castration resistant. The cancer is metastatic castration resistant (mCRPC).

Possible treatments are continuing with ADT and add zytiga, chemo , enzalutamide or apalutamide. Discuss the possibility of doing the vaccine Provenge which could prolong life for a while.

Talk about doing a direct biopsy or a liquid biopsy to study the genome of the cancer. Depending on the mutation he can be eligible to be treated with olaparib, rucaparib and/or keytruda.

JNunes profile image
JNunes

I'm new here. My father is also undergoing treatment. I don't have the knowledge to help, but I want you to find help. I hope the best for you.

in reply toJNunes

JNunes. Compassion is healing . Thank you 🙏 Good luck to your father too. .

Dear Manohar11 , I welcome you ! .“Petrified” Is a word that we all can understand. He has a tough pc this means another round of something.? I’m no expert . Others will state his options. This is the tenacious nature of APC . I’m sorry for the PSA jump. There is something to be done . I too couldn’t have the surgery . The psychology is bad when things Are rising. Many prayers for you both. You’re not alone. Every wife here can relate to the waiting and worry . Please care for yourself along the way . We must keep swinging at pc . we must be relentless in the effort to put it down . IT IS it or Us?

. No choice except to fight . Hope is that a med change will help . Hang in there . I’m pulling for you two to get to a better place soon . Keep hope alive ..... Scott🌵

Tall_Allen profile image
Tall_Allen

Hopefully, he will also have a good response to the Zytiga. Germline genomic tests are cheap ($250) and easy (just mail them some saliva), Color Genome Dx makes a good test. If insurance will cover it, try to get a biopsy of one of his metastases - it usually shows nothing useful, but you never know.

Magnus1964 profile image
Magnus1964

First of all he is NOT castrate resistant. To be castrate resistant you have to fail all ADT drugs. If his doctor pronounced him castrate resistant then started him on zytiga, I get the feeling his doctor is not well informed.

That said zytiga or casodex would be a good next step.

Fight11 profile image
Fight11 in reply toMagnus1964

That’s what he said because the Lupron is failing.

Magnus1964 profile image
Magnus1964 in reply toFight11

Failing Lupron does not mean he is resistant to casodex, zytiga, xtandi or other ADT drugs. Maybe you need to a new doctor.

Fight11 profile image
Fight11 in reply toMagnus1964

He has Mets in the sternum hip and right shoulder!! The Dr is going to put him on Zytiga.

Cateydid profile image
Cateydid

My husband just ordered the Zytiga and prednisone yesterday. I'll post as we go along to let you know how he's doing..

He didn't take Casodex yesterday, and said he felt terrific for the first time since starting it. I wouldn't have expected such a fast response, but I'm sure glad he had a happy day!

We're going forward with genetic testing, too.

We are not going down easy!

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