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.
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....
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
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!
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.
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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