Confused

[jkholmes]

Dx last august gleason 8 with bone mets and lung nodules. Last 6 months nadar psa. Feel good no pain. So i'm on lupron , zitiga , predesone and xgeva. So out of no where pathological fracture. right humerus. last scan undectectable mets. No answers. Maybe need new Mo.

[ctarleton]

I would be seeking to add an orthopedic oncology/surgeon to my treatment team, in addition to my best available oncologist who specialized in advanced prostate cancer. Asking for a referral for a diagnostic/treatment options opinion and plan. Sharing some info about my general location so that others might assist in locating this new specialist for the team. Etc.

Charles

[jkholmes in reply to ctarleton]

Hi Charles. Thanks for info. I'm in south jersey close to phila. Being treated at univ of Penn cancer center. I have a med onco. I just saw a onco orthpedic surgeon and he wants to do surgery looking for 2 opinion. Also going to Johns Hopkins for a second opinion.

[ctarleton in reply to jkholmes]

If you've not already seen it, this page might be useful.

hopkinsmedicine.org/orthopa...

Always a smart move to seek opinions from experts as you consider ALL the options for anything invasive like a surgery, with risks/benefits to something like the future range of motion or functionality of an arm or other body part.

Best of Luck to You.

Charles

[pjoshea13]

Lupron, due to its drastic reduction of testerone, can also lower estradiol [E2] to dangerous levels. Once one gets below 12 pg/mL, bones can become weakened. I believe that one should test E2 while on ADT & consider using a low dose patch to bring E2 up to ~20 pg/mL.

ncbi.nlm.nih.gov/pubmed/269...

Don't forget vitamins D & K which are needed for bone health.

-Patrick

[ronnie1943]

Hi, nine years ago my husband had a huge tumor that went from his shoulder to his elbow, Dr. Richard Schmit

Orthopedic Oncology/surgeon operated on my husband

and Saved his arm, Dr Schmitt is affiliated with Lankenau Hospital on City line Ave. he's also at Jefferson in Philly and has an office in Bala cynwood.Pa. I'm forever grateful to him. Breat surgeon!!! One of the best!!!

Best wishes, Lynn, Pa.

[jkholmes in reply to ronnie1943]

Thanks for info Ronnie. I will give them a call.

[ronnie1943 in reply to jkholmes]

Hi, you are welcome, please do give Dr. Richard

Schmidt a call. I'm sorry I had spelled his name wrong on my last reply. Read up on him, if my husband ever needed another orthopedic surgery We wouldn't think of going to anyone else.why would we change when we had the best!!! If you read up on him you will read he saved this women's knee which otherwise would have resulted in amputation of her knee plus most of her leg.

Dr. J. Schmidt

1020 Locust

Jefferson Alunni Hall

Suite 520

Medical director of orthopedic Oncolgy

You can't go wrong please don't hesitate to call , you will know after your first meeting with him you made the right decision. He's also has the best bed side manner. It's probably a little over nine years that he saved my husbands arm from being amputated.

We are forever grateful to Dr. Schmidt.

What ever decision you make, best of luck to you and

Keep us posted. We are all here for you.

Sincerely, Lynn Pa.

[leo2634]

Hi JK I'm also from South Jersey "Sewell" and have the exact diagnoses as you ,also prescribed the same medication. Geez talk about Brothers from another Mother. I was recommended to

Dr. Gordon Brown Formally Delaware Valley Urology, now

New Jersey Urology by my primary Doctor. Dr Brown is also in Sewell with offices throughout Jersey. I also had results checked by a

U of Pa. Top MO. The same line of treatments were suggested. I couldn't be happier with my Doctors in Sewell the knowledge and compassion Dr Brown and his staff have is far beyond my expectations. He also sits on several Board of Directors of cancer research organization's.

I have been given a support team by my Doctor that assists me in every aspect of this terrible disease we have. I truly understand the need for top doctor and medical institutions that specialize in APC but there are smaller more one on one type locations as mine that provides the same quality care needed. My PSA was 14.7 in February to undetectable in March with all the same medication as you. I hope we live a long life Brother because I'm not ready to give up too much to live for.

Never give up never surrender. Leo

[jkholmes in reply to leo2634]

Hi Leo yes we are going down the same path. I also live close to you . Up the road in Haddonfield . My Mo is at U of penn. Unfortunately has taken off for 6 months to write a book. Feeling good but breaking my shoulder has changed that. 6 months with undectable so quite a shock. Always feeling positive so this is just a bump in the road. Jon

[Kevinski65 in reply to jkholmes]

How and why did it break

[larry_dammit]

Love these rust years 😜😜 Xgeva I thought was supposed to be a shot to help the bones mend . My DO tells me not to lift more than 20 pounds and to not fall. Never know what may of caused the break . Fight the good fight

[Kevinski65 in reply to larry_dammit]

I went to my mo asked for Zometa. He told me it wouldn't increase my survivability. I countered with the fact that I could wind up in a wheelchair if my vertebraes collapsed. He then asked about my teeth. I said I needed a root canal. He said gotta get that done first. I bummed out considerably because my dental maxed out. I have to wait until next July. 😓

[Bloomington]

See about getting a PSMA PET scan, may show mets not visible with other imaging.

[Kevinski65]

I saw a radiologist's report of a bone scan that said I had a fractured vertebrae. By the time I remembered to ask another bone scan had been done which showed no such fracture. I asked the doctor he just shugged his shoulders. Asked if I ever fell down. I said not that I can think of. End of discussion.

[j-o-h-n in reply to Kevinski65]

Kevinsski.... you should have told him you fell when you went "Ski"ing ... Does the doctor have round shoulders and a flat forehead. Cause when you ask him a question he just shrugs his shoulders, and when you tell him the answer he slaps his forehead with the palm of his hand.

Good Luck and Good Health.

j-o-h-n Friday 07/20/2018 5:57 PM EDT

[Kevinski65 in reply to j-o-h-n]

Good one

[Dan59 in reply to Kevinski65]

Kevinski, I had a Bone scan back in Feb after hip radiation that said I had a broken hip, I had been skiing 2 days a week and the MO said to quit skiing, I have been walking fine ever since. That and other things have caused me to wonder what they really see and how accurate it is.

Dan

[Kevinski65]

I guess arthritis and bone mets look similar. You have to take them seriously.

[Kevinski65]

When you get this disease you get to see lots of doctors. When you're in a clinical trial even more so. I go to NIH so I get a new one every time I go there. In a clinical trial at NIH the government pays for everything. The flight, the meals, part of the lodging, the tests the medicine. They like running test, 12 vials of blood for a slew of blood tests, every 12 week a 🐈 scan a bone scan and a pet scan. When you go to the clinic most are done. It's been 3 years of this. I used to be afraid to fly, now it's like getting on a bus.