Hi from down under.: Hello. My journey... - Advanced Prostate...

Advanced Prostate Cancer

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Hi from down under.

12 Replies

Hello. My journey began in March 2016 when an mri raised a suspicion of there being cancer in my prostate. I had a biopsy in June 2016 which gave a positive result and a Gleason 7. I was referred to a urological surgeon and in August underwent a radical prostatectomy done by the da Vinci method. Unfortunately the Gleason score was increased to 9 and was told I had an advanced and aggressive cancer. My post op psa dropped to 0.03 from a pre op reading of 6.5. In February 2017 the Urologist suggested I might benefit from radiation but after six weeks of daily treatment my psa remained at 0.03. By later that year the psa had risen to 0.08 then to 0.12 in early 2018. A psma pet scan in March didn’t show any spread but by November a scan picked up five lesions, three on my spine, one in my left hip and one in my right groin. I am now seeing a medical oncologist and have started monthly firmagon injections and will soon start six courses of chemo.

Throughout my whole journey I have never felt unwell, except for the occasional emotional downer. I admit I am not looking forward to the chemo but will deal with it as it happens.

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12 Replies
Tall_Allen profile image
Tall_Allen

" but will deal with it as it happens." -- Good attitude! It sounds like you are following a very good plan,

NPfisherman profile image
NPfisherman

Welcome fellow sufferer...sorry to hear you are here, but there is a wealth of knowledge here....for supplements, research, treatments....I advise reading pjoshea13 and Nalakrats, but all of us post .... There are breakthroughs and new drugs coming.... Hang tough....there is support here from many.... if you are having trouble sleeping--common problem amongst us, I use sleepytime tea and melatonin....breathe.....ask questions....

Take care,

Fish

Harry_B profile image
Harry_B

Hello from a fellow from down-under. I'm in Adelaide. Advanced metastatic PCA with three bone mets, four lymph tumors and Gleason 9. I think you need a multi-disciplinary team (urologist, oncologist, radiological oncoligist and really good GP). Also someone who understands the current state of play with nuclear peptides. I know the rules in Oz and can help. Let me know. Cheers, Harry

in reply toHarry_B

Hello Harry B, I am also in Adelaide.

My history from diagnosis is;

Radical prostatectomy, August 2016

Adjuvant radiation January 2017

ADT started November 2018

Chemo starting February 2019

My Gleason score in 2016 was 9 but my psa has always been in single figures, never higher than 6.5

As you would have read, my last pet scan showed 5 lesions.

tallguy2 profile image
tallguy2 in reply to

It sounds like you have a good care team and a plan. I followed (and continue to follow) a similar path. The chemo may shrink those lesions revealed by the PET scan...ask for another one about 2 months after the last chemo. You will be able to handle the fatigue brought on by chemo with your positive attitude. Stay physically active as best you can. You are in this for the long haul.

At some point genetic counselling/testing might be advisable. I expect my results next week. Some results are actionable today with "PARP inhibitors," while other results will wait on the new precision medicine to evolve via clinical trials.

Best wishes.

P.S. We have visited the "land down under" four times and are planning a 5th in 2020. Out last trip was to Adelaide, Kangaroo Island, and then on to Tasmania. We love Australia!

thevvy profile image
thevvy in reply toHarry_B

G'day cobbers

I'm from Wanilla, near Port Lincoln. I am currently in the care of Dr Tan at the New RAH.

Be over in February for a check up. Would love to catch up with you if you wouldn't mind.

My email is bob@nuyts.com.au. Love to hear from you.

Cheers

Thevvy

Harry-B profile image
Harry-B

My email is: harry.bradford@live.com.au

Let me know if you want to converse off line. Cheers. Harry

in reply toHarry-B

That would be good, how do we exchange contact details.

in reply to

Hello Harry B, I should have read your reply properly, I’ve just seen your email address.

Bebby1 profile image
Bebby1

Hi guys

I’m from oz also

My husband on the same journey

This is a wonderful site with great people who offer good honest advice

Some of the drugs I have never heard of as the states have more access ( too expensive)

Good luck to both of you

I wish you the very best

monte1111 profile image
monte1111

I would just love to walk up to somebody and say "Hi, I'm from Oz." And if they said where from Oz and I said "The Emerald City" I would have a net over my head. Best of luck to you down unders from an up overs.

ARIES29 profile image
ARIES29

Hi hidden, i am from OZ downunder also, up bush way Gunnedah, NSW. I have been on lifes little roller coaster since 2011. Radiation,5 months ADT & a shot of luprin that really knocked me down for 6, so much so i would not entertain chemo at all. Now recently had Lu-177 treatment,psa from 20 to 1.9 in first shot & results of second one later this week. Good luck to you.

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