Hello from down under

Hi all, I’ll try to keep my journey with prostate cancer brief.

I was diagnosed in March 2016 with advanced and aggressive PC with a Gleason 7. I chose surgery which, post op, increased the Gleason to 9 and PSA 0.03. 2017 I had follow up radiation but the PSA remained at 0.03 suggesting metastatic activity had already occurred. Late 2018 a PET scan showed five lesions, three on my spine, so was referred to an oncologist who put me on chemotherapy, six sessions of docetaxal with Firmagon. The result was good initially bringing my PSA down to less than 0.01, considered to be undetectable. Post chemo I continued to receive monthly injections of Firmagon then to three monthly Zoladex. Late 2019 my PSA began to rise and another PET scan showed a hot spot at the base of my spine which was treated with intense radiation, three sessions, and brought my PSA down again. Unfortunately, this year my PSA again began to rise so was put onto Xtandi as well as the Zoladex. My last visit with the oncologist was pleasing as the PSA has dropped. The side effects of the Zoladex and Xtandi have been moderate with the worst being fatigue, weight gain and sleep pattern.

Well, that’s my very brief story but there are a lot of facts and figures I could have added. I have always chosen to say I am living with cancer and not battling it as I know it will be the winner.

[Tall_Allen]

Are any of your metastases big enough to biopsy?

[Hidden in reply to Tall_Allen]

Hi, so far all my metastasis is in my bones with no organ or lymph involvement.

[Tall_Allen in reply to Hidden]

Can you get Xofigo?

[Stevecavill in reply to Tall_Allen]

Xofigo is not approved in Australia

[Stevecavill in reply to Stevecavill]

Sorry I should have said not reimbursed

[Tall_Allen in reply to Stevecavill]

Damn - too bad. You seem to be a perfect candidate.

[ARIES29 in reply to Hidden]

Hi there Ferrousoxide, also from down under. I have a story like yours with metastasis only in lymph nodes so far. Diagnosed in 2011, tried lupron, casodex & LU 177, now on Firmagon only. Psa up & down over the years.Hang in there brother & fight on.

[Hidden in reply to ARIES29]

Gidday ARIES29. I’ve certainly learnt a lot about PC in my five and a bit years since diagnosis. When I read of others experiences it amazes me the PSA scores I see. Mine was only up to eight pre op and post op, so far, 1.8.This year it rose from 0.3 to 0.8 then 1.8 at which time I was put on Xtandi. It is now down to 0.3 after only three months on the Xtandi.

[ARIES29]

So you had the prostate out? I wish I would have done that years ago. My PSA has gone from 19.6 to 1.6 with different treatments or drugs & my biggest downfall was going off treatment. But now the PSA is 0.7 so will see how low it will go on Firmagon.It is amazing when you read of high PSA levels & there is so much to learn here.

What part of OZ are you? Im in North west NSW.

[Hidden in reply to ARIES29]

I’m in Adelaide, just about to settle with the cricket.I was given the choice of surgery, laparoscopic, or radiation. I chose surgery with the hope of removing the cancer as there was a chance it was still contained. Unfortunately, it wasn’t to be.

I’ve never been troubled by the cancer itself but have had a few issues with treatment. Now on Zoladex and Xtandi has caused me to stack on some weight including moobs. Also, my sleep pattern has been shot to pieces.

[ARIES29]

Yep, I hear that, putting on weight, moobs, fatigue, brain fog, hot flushes is most annoying , sleep patterns upset also. All I can recommend is exercise & I take amino acids to help with fatigue & brain fog. L-Arginine, 3g day as recommended by another on this site.

[Hidden]

All the very best going forward bro, Kia kaha....stay strong

[Hidden]

I'm watching the cricket too

[lcfcpolo]

Hi from England.Glad to see that you are fast coming up to the 5 year mark. Your doctor's have supported you well. Xtandi has worked for 17 months so far.

Best wishes and good luck.

Ps. Decided against watching the cricket!

[j-o-h-n]

"Hello from down under" and a "Hello to you from Up and Over"....

note:

Cricket is like baseball played by mental patients.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/18/2021 6:26 PM EST

[MateoBeach]

Hi FeO2, curious about your name and connection to that most interesting molecule. Just feeling “Rusty”, or something more to that? Now that you are in category of mCRPC are you eligible for Provenge reimbursement there? Would do that if you can. Also be on a bone protective regimen, ideally denosumab Xgeva or Zometa. Add celecoxib 400 mg daily to that.An estradiol patch 0.10 mg twice a week can do wonders to relieve ADT side effects and also protect bones. Need to add tamoxifen 10 mg to avoid moobs but no SEs from that.

The only thin that worked for me to drop the excess fat was a low carb/ Keto diet- burned ALL of the excess fat off with no hunger and great energy! Need to study up on it if you go that route. Lots of free info curated at DietDoctor.com or the Kindle book The Ketogenic Bible. Good luck mate.