Diagnosis + 18 years; update since Xofigo

I finished Xofigo last October. My experience with it was good. Minimal side effects, no complications. Pain relief from multiple bone mets started after about 6 weeks on Xofigo. PSA was .66 on completion of Xofigo treatments. Unfortunately in January I fractured my T7 & T8 vertebrae in a fall. Fortunately the fractures did not displace and the vertebrae did not compress but I did have to go back on Hydromorphone for pain relief as a result of the fractures. Then, in July the T8 compressed. So I had vertebroplasty on T8. They couldn't get the needle in T7 so I had five radiation treatments to it. I am now on a 50 mcg fetanyl patch to control the pain with Hydromorphone for break through pain. My PSA has risen to 5.35 so my medical oncologist has started me on Xtandi. The fetanyl patch has made controlling the pain much easier. I am still able to do my daily activities, play bocce 5 days a week, and light exercises. As long as the pain is under control quality of life is still pretty good. I hope this is helpful information to others on this journey. My treatment history since diagnosis in 1999 at age 55 Is as follows:

PROSTATE CANCER TREATMENTS:

1999 PSA 2.7, Radical Prostatectomy, staged, T2a N0M0, Gleason 8 (4+4), Age 55

2006 PSA .4, 7 weeks external beam radiation of the prostate bed plus Casodex and Lupron

2008 PSA 1.0, to 2011 Intermittent (9 months on, 9 Months off) Lupron Androgen Deprivation Therapy

2011 PSA 3.5, to date Continuous (injections every 6 months) Eligard Androgen Deprivation Therapy

2012 PSA 1.7, -2013 PSA 1.8, Two Xgeva injections, then stopped Xgeva

2013 PSA 3.2, 10 days Palliative Radiation of Mets T7 thru T10 Vertebrae and left 10th rib, PSA .2

2014 PSA 1.29, 3 Provenge (Sipuleucel-T) infusions, PSA 1.8

2016 PSA 9.1, 15 days External Beam Palliative Radiation Tumor on left femoral head, PSA 1.0

2016 PSA 1.1, six monthly Xofigo (Radium 223) injections, multiple metastasis spine, ribs,femur,sternum, PSA .66

2016 PSA 1.15 Resumed monthly Xgeva injections

2017 PSA .77 Fractured T7 & T8 vertebrae in fall in January

2017 PSA 4.23 Suffered spinal compression T7 & T8 in July, radiation T7, vertebroplasty T8

2017 PSA 5.35 Started Xtandi in August

8 Replies

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  • Wow! Quite a history. Good Luck on the Xtandi! (I started Xtandi in Dec 2016 with a PSA that had risen back up to 95. After 8 1/2 months, my PSA has dropped to 1.5, so far.) Hope your PSA drops to some Really Low numbers soon, and stays really low for a long time.

    Charles

  • I am in awe of your life. It's journeys like yours that hold the rest of us together. Much love to you and your family.

  • Wow good job Chasri you have been giving it a right kicking 18yrs well done m8, hoping for many more for you.

    Oh one question, what has your PSA doubling time through out.

    Cheers

  • I have never calculated my PSA doubling time. If my PSA is down or going down I figure whatever treatment I am on is working. If PSA starts rising I assume new mets are starting up somewhere and the current treatment has stopped working and start thinking about what treatment to try next. If mets new or old start causing pain I seek palliative treatment of the mets causing pain to try to reduce or eliminate the cause of the pain. I use pain killers as needed to try to manage the pain and keep it tolerable, mainly naproxen sodium 220mg or pain at level 3 or lower; Hydromorphone 2mg for level 4 or higher. This month the Hydromorphone has not been enough, so on doctors advice I now use 50 mcg fetanyl patches, every 3 days, and 2mg Hydromorphone tablets for break through pain. On my pharmacists advice I have started keeping a daily diary of my Hydromorphone use and only using it when break through pain is level 4 or higher. Most days I don't need to use the hydromorphone.

  • Hi Chascri thanks m8 you've done so well hope you can stay on top of the pain.

    MyMy PSA doubling time unfortunately is 4weeks making it aggressive to be honest I would be happy if I got nearer to 10yrs & not the 5 they are giving me.

    Cheers

  • In 1999 when I was diagnosed and had my prostatectomy I was told I only had a 48% chance of surviving 5 years and yet here I am 18 years later with a pretty good quality of life.

    Do what your doctors recommend to treat your cancer, but don't let it dominate your life or define you. Prostate cancer is generally very slow growing and if treated promptly you probably have many more years to live. Remember it's not the years in your life but the life in your years that matter. The past is history, the future a mystery filled with unlimited possibilities. All any of us have is today. Try to make each day count and live it to the fullest.

  • Thanks Chascri I try & keep my life as normal as possible and don't let it get the better of me, I follow everything my Oncologist says.

    Cheers

  • I had the same exact same PSA and gleason score when I was diagnosed last year, at age 66. I hope you find lasting relief from pain.

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