First visit in a long time.

[Tomkrug]

I was diagnosed with pc in 2010. Prostatectomy at Sloan and no PSA since. My brother has not been so fortunate. Diagnosed in 2014, prostatectomy, radiation and Lupron. His PSA just went from 3 to 81 in 3 months. Cancer nodules detected in his lungs and abdomen. His oncologist at Sloan is putting him on Xtandi. He's convinced he's going to die in a few months. Any words of wisdom/advice would be appreciated. Thanks.

[Tjc1]

Hi Tomkrug, As he seen a medical oncologist? It sounds lke maybe chemo might be an option. Im no dctor but many others here believe hit it fast and hit it hard. Im sure he can have alot of years ahead of him. Best of luck

Thomas

[Tomkrug in reply to Tjc1]

Thank you. I'm glad I came back to this site.

[ronton2]

Tom, I appreciate your concern and your brother's fears. So many men on this site have been in similar states--and so many of them have found treatments that continue to extend their lives, some for many years. Keep looking for posts here. And I wish your brother peace and the best possible outcome!

[Tomkrug in reply to ronton2]

Thank you!

[Dr_WHO]

Please let your brother know he is not a statistic. His cancer is his. While it is more aggressive than yours, there are men here that had PSA over a thousand, mets everywhere, bit that they been around for a long time, sometimes decades.

While it is up to him, I would treat it as hard as he can. He should ask about chemo. Perhaps adding Zytiga.

Sometimes your state of mind can be your greatest weapon in the battle against cancer, but sometimes it could be your worst. Please let him know that there are a lot of people pulling for him. He (and you) are part of our family here. People like us we have to stick together!

[Tomkrug in reply to Dr_WHO]

Thank you. I appreciate the perspective, which is really important!

[erjlg3]

He can Do This!! Fight Fight Fight. Get 2nd, 3rd or even 4th opinions. We're All Here. Some Of us have Sooo much more knowledge and will help you and him to survive, thrive and make it through this. Some Of Us Will Cheer You On And Root Root Root For Both Of You. Ask, seek, read, learn and gain all of the knowledge that you can to beat the beast down. Been doing this since 11/2003. BREATHE, ENJOY EVERY SECOND 😊

Most Sincere,

Jackie

[Tomkrug in reply to erjlg3]

Thank you so much!

[boseley]

I was diagnosed 2013 T3C N1 M0 operation not recommended Went on ADT (Lucrin) till mid 2016 when PSA started to rise so 62Gy of radiation which did very little, PSA climbed rapidly 2017 so put on Bicalutamide for 2 months to no effect. Now on Zytiga/ prednisone and PSA has dropped from 72 (in Dec) to 62 to 25 (monthly test). Tell your brother there are many living with Pca and we understand its all a bit scary but fear only takes us away from the main task of making the most of every minute on this planet, and helping others and being kind to the planet where we live. Pity it takes Pca to become aware of what is really important!!

[Tomkrug in reply to boseley]

THANK YOU!

[Tomkrug]

Yes we do. We're both part of a pancreatic cancer study at Sloan (our oldest brother, Tony, had pca and then passed of pancreatic cancer. I have 2 mutations that increase risk of breast, prostate, and pancreatic cancers. Brother Mike has 1 of these mutations. Our mother died at 54 of breast cancer. Uncle on father's side died at 55 of prostate cancer (oddly, one day apart). Thanks for the insight and encouragement.

[vandy69]

Good Morning Tomkrug,

Attitude matters as does the best Medical Oncologist your brother can find. At Sloan he should be fine.

I was diagnosed in 8/2012 with PSA=29 and Gleason=10 with numerous lymph node mets. Now have mets in liver, but I am still here! Please see bio for complete treatment history.

He has years to live with an aggressive treatment to his aggressive cancer.

Best wishes. Never Give In.

Mark, Atlanta

[Tomkrug in reply to vandy69]

Thanks, Mark!

[larry_dammit]

I was diagnosed stage 4 in August of 16, PSA of 39 up from 3 in April , cancer in lymph nodes, bones a a spot on my spine. Doctor gave me a 50/50 for 5 years. 6 rounds of chemo, and Lupron and Xgeva. Now on monthly lupron and Xgeva plus the Xtandi . Side effects are tough to get around. MsCotin and dilaudid. Effexor for my moods. It did work as well as helping the hot flash’s. All I can tell your brother is get close to your loved ones, get ready to meet your maker. But don’t give up, talk to your wife and kids, make plans. Eat what tastes good, do what’s fun if you can and don’t feel bad about takin* that nap to feel better . My wife found a councilor to help her with her fears and I started a diary . Last but not least. My doctor said there is no better time to have prostate cancer than now if you have to have it 😀😀😀😀

[Tomkrug in reply to larry_dammit]

Thank you! Best wishes to you for many more years!

[Tomkrug]

No BRCA. Two other mutations. Have to look up the name. Yes associated with Eastern European descendants.

[ctarleton]

I was alive at age 65 with many, many bone mets & also lymph node mets and a PSA of 5,006 at first diagnosis. I had none of the family genetics factors, and my cancer cells were quite responsive to hormone therapy. My PSA on mainly Lupron dropped to 1.0. Around two years later, and some other treatments in between, my PSA was up again to 95, and I had about 10 places in multiple bones and some lymph nodes that showed up "hot" on a Ga68 PSMA PET scan. When I started Xtandi my PSA quickly dropped toward the range of 1.2-1.7, and was last at 1.7, some four years and two months after original diagnosis.

I agree with Nalakrats about looking into the genetics of family/tumor tissue for possible targeted treatment options.

High PSA numbers in one sense are just numbers on a piece of paper. Progression as documented on scans, along with symptoms, becomes relatively more important in advanced disease.

It will not take long to see if his PSA starts dropping rapidly with added Xtandi. After a while, his doctor will order some more scans to check for radiological response. If things are better, he may get far more than just a few more months of life, and you can help him enjoy them. If/when Xtandi may someday become ineffective, there are other treatment options waiting in the wings.

It's never easy watching the "numbers" going in the wrong direction. Getting some of that anxiety out in on-line support forums and face-to-face prostate cancer support groups can really help.

Charles

[j-o-h-n]

to Tomkru

"He's convinced he's going to die in a few months". Well tell him if that's the case would he please be kind enough to give me the winning lottery numbers. Tell him to put that type of thinking on the back burner and to channel his anxiety in a positive way. He will be around for many many years, in fact he probably will be around to see the NY Giants win the super bowl. Tell him to laugh, laugh and laugh.

Good Luck and Good Health.

j-o-h-n Thursday 02/08/2018 5:35 PM EST

[Tomkrug in reply to j-o-h-n]

Thanks, I will!