prostate metastasis

[Myshadowgirl1]

hello - please excuse me if I don’t use correct medical terms - I’m learning! My husband was diagnosed almost a year ago with stage 4 (via prostate biopsy) prostate cancer that had metastasized….. multiple bone areas affected per his 2 Nuclear Bone Scans, Cat Scans etc - his PSA was off the rails = 1343 … yes, 1343 …. Took only like 3 months to get PSA back down and now his numbers are in the negative! Hallelujah…. He’s been having Eligard stomach infusions and Xtandi prescription daily along with taking Calcium prescription ….. he did have 5 intense rounds of Radiation on his upper spine, C 1 - C2 - C-3 and one shoulder area ….. my question is, he had a repeat of both of the Nuclear Bone Scans - just like 2 weeks ago …. No mention of metastasis anywhere in the written report …. A lot of language of arthritis….. etc ….. is it possible that the metastasis has left? I mean, he even had a broken rib during all this, and that isn’t even mentioned. He has ALOT of pain in his neck, mainly the C-1, 2 and 3 area …. His C-1 had shown it was fractured in the beginning of all this but now that isn’t mentioned as fractured. Appreciate your time - Thank you all so much for bearing with me …. Oh yes, he does see his Oncologist in December - he will see the 2 discs of both Nuclear Bone Scans when we meet with him - he’s in a different city from where the Scans were done at - so I hand carry them in for his Oncologist

[Tall_Allen]

They can eliminate the larger metastases - the ones that can be seen with imaging. But there are thousands of microscopic ones in tissue reservoirs everywhere. The standard of care of men with his diagnosis is now "triplet therapy"- (docetaxel+abiraterone/darolutamide+ADT). I don't know why he didn't have that.

[Myshadowgirl1 in reply to Tall_Allen]

Hello ~thank you for your kind response. he’s been on Xtandi since we began with his Oncologist (we stopped seeing the other Oncologist - in the beginning, who did absolutely nothing) he’s been on regular Eligard Infusion injections ….. and he received Radiation treatments …. We are scheduled to see his Oncologist in December….. his Oncologist will be viewing his 2 recent Nuclear Bone Scan discs at that appointment…. Hoping to have some light shed

[Warriorthree in reply to Myshadowgirl1]

Hi started in 2000 with a bit of fatigue had all bloods done my PSA was 2400 and 2600 after 2 blood tests had immediate biopsy and had Advanced Prostate Cancer Gleason 8 only ever had Xtandi 4 tablets a day and my PSA is 0.02 and has remained like that for 3 years oh and have a 6 monthly injection spoke to my Consultant yesterday and he will speak to me again in 6 months so grateful to be on these tablets only had mild side effects that have completely vanished now unfortunately lost my wife to cancer it’s the anniversary tomorrow one year ago my daughter and beautiful grandson George who is one year old help me get through wish my wife could have had something to help her but live and love for today

[lcfcpolo in reply to Warriorthree]

Hi. I'm on a similar trajectory to yourself. High PSA of 1311 in May 2020, on Xtandi 4 tablets since, currently 0.03 PSA. Sorry to read about your wife, I hope that tomorrow goes well for you. Your daughter and George sound great.

[Warriorthree in reply to lcfcpolo]

Glad your on a similar track to me and thank you so much for your comments this is a fantastic site with lovely people

[Myshadowgirl1 in reply to Warriorthree]

I am SO SORRY for your loss.....😢

[dhccpa in reply to Tall_Allen]

It would be interesting to survey USA docs to see what percentage are using triplet therapy from initial diagnosis of mPCa. I suspect not as many as one might assume--just a feeling. I think many docs still have the "hold it in reserve" idea. What do you think? I'm not suggesting triplet therapy is an incorrect choice.

[Tall_Allen in reply to dhccpa]

It is part of NCCNs guidelines- I think most follow it.

[Woodstock82]

Those are reasonable and specific questions to ask about the radiologist's report when you meet with the oncologist. Write the questions down ahead of time and take them with you, so that you can present them very clearly.

[SteveTheJ]

Cancer never quits. If his PSA is undetectable and/or the tumors no longer show up on scans, be grateful but don't let your guard down. Get a PSA test at least every 3 months and be prepared to act if the PSA goes back up or if scans show tumors.

[Myshadowgirl1 in reply to SteveTheJ]

Absolutely! he's having huge blood work done every 3 months

[SteveTheJ in reply to Myshadowgirl1]

I'm on the same plan. Best of luck,

[Kiki27]

Hello, this is only time I’ve heard about someone with a psa almost as high as my husband. He was diagnosed a year and a half ago with a psa of 4700 and was just 53. He started on Lupron and Zytiga,. Great results initially but didn’t last long. His liver didn’t tolerate the zytiga and switched to Erleada. That worked briefly and psa started to rise again. Then he started docataxel, again the psa went down briefly and slowly began to rise. He has been doing Pluvicto, 4 treatments in and it’s not working. We are running out of options. Looking into clinical trials or maybe another kind of chemo.

[Tinuriel in reply to Kiki27]

Whoa, that's rough. Hope you find a trial that works well for him.

[Myshadowgirl1 in reply to Kiki27]

Have they considered prescribing him Xtandi along with a stomach infusion?? Wishing you all the best.

[Myshadowgirl1 in reply to Myshadowgirl1]

My husband HAD HIGH PSA - 1343 -- ever since he's been on Xtandi - almost a year now - (4 a day) and stomach infusions every 3 months - his PSA remains in the negatives.....praying it stays that way. He's had radiation as well. wishing you the best

[Professorgary in reply to Kiki27]

My Psa was 5664 with cancer in nodes, lungs, and bones. Started Lupron and Psa bottomed at 6 after 10 months. Added low dose zytiga with food and still coming down. Side effects minimal. I take curcumin, 2800mg and 400 mg magnesium daily. I also get Xgeva injections but refused recommended calcium until blood tests. Calcium normal. Alp normal. I live in the US where over half of the people are magnesium deficient and very few are calcium deficient.

[j-o-h-n]

Husband's age? Location? BTW "disk = computer disk" "disc = body part"....... (Good idea to update your dear husband's bio with info).

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/14/2023 8:04 PM EST