BOGO cancer: I was diagnosed a bit more... - Advanced Prostate...

Advanced Prostate Cancer

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BOGO cancer

KSam59 profile image
14 Replies

I was diagnosed a bit more than two years ago with body PC and kidney cancer. The PC had already spread to spine and radiation and chemotherapy along with ADT (firmagon and Nubeqa) seem to have put it in a sort of remission. My PSA has been undetectable for 15 months. Just after chemotherapy I had a genetic test which came back positive for the BRCA2 mutation.

I wonder if anyone out there has the mutation and if it resulted / correlated in multiple cancers? The kidney mass has basically grown/changed very little since day one. Eventually I’ll have to remove all or part of that kidney but the MD has recommended not doing so for now.

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KSam59 profile image
KSam59
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14 Replies
mrscruffy profile image
mrscruffy

I am BRCA2 positive but cancer has only appeared in the spine and pelvis. Currently being held at bay with Lynparza

Lawrencee profile image
Lawrencee in reply tomrscruffy

How long have you been on Lynparza? Any side effects?

mrscruffy profile image
mrscruffy in reply toLawrencee

Been on Lynparza for 13 months. Only SE is low red blood cell count which makes doing yard tough as I become winded easily. Still able to do cardio though. Besides that smooth sailing

KSam59 profile image
KSam59 in reply toLawrencee

I have not been on this drug.

God_Loves_Me profile image
God_Loves_Me in reply tomrscruffy

Following

IKNY profile image
IKNY in reply tomrscruffy

Hi, I’m non BRAC2, had kidney cancer 2yrs prior to prostate cancer, which at the time was determined BPH. Had partial nephrectomy and on my last check-up, urologist was concerned about the prostate… it had advanced to stage 4A during the kidney odyssey.

Had genetic testing done, no matches.

RAPL, radiation and now on ADT Lupron/Nubeqa*

*Switched after Abiraterone due to liver involvement.

Interesting, last call to the PA, she mentioned they have experienced other men recently not reacting well (liver) to Abiraterone.

KSam59 profile image
KSam59 in reply toIKNY

When I got a second opinion at diagnosis, nubeqa was suggested instead of abiriterone because nubeqa appeared to be more effective.

KSam59 profile image
KSam59 in reply tomrscruffy

Good luck to you and thanks for the feedback.

IKNY profile image
IKNY in reply toKSam59

Thank you and best of luck to you too.

And thank you for the info on Nubeqa.

So far I’m doing great, <=.01 since 01/24

GAdrummer profile image
GAdrummer

My husband does not have BRAC2 mutation, but he had leiomyosarcoma and prostate cancer at the same time. My dad had salivary gland cancer and prostate cancer, but I don't know that any testing was done for gene mutations back in the '80s.

KSam59 profile image
KSam59 in reply toGAdrummer

This is interesting. Perhaps multiple concurrent cancers are not tied to BRCA2 or are rare?

GAdrummer profile image
GAdrummer in reply toKSam59

My husband is a rare old bird. Leiomyosarcoma is a hidden killer, growing in smooth muscle tissue, usually in ducts of organs. His was found on his shin in an open sore that wouldn't heal, a big surprise after biopsy and an easy location for successful surgery with removal of inguinal lymph nodes. In the U.S. there are about 1.4 leiomyosarcoma cases for every 100,000 people. His prostate cancer was metastatic to nodes only, only 6.4% of men with prostate cancer fall in this category. He was a super responder to Keytruda therapy, only 5% of men with prostate cancer in Keytruda trials were super responders. I call him Dr. Lucky.

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

Note: When ordering from Amazon it's not BOGO it's BORO............ Buy One Return One.

Good Luck, Good Health and Good Humor.

j-o-h-n

KSam59 profile image
KSam59 in reply toj-o-h-n

touche

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