Hello, I am a 68 year old and had failed prostatectomy in 2007. In 2009 I had radiaton therapy to my abdomen and my PSA was undectable for more than 3 years. I have been steady on Zoladex every 3 months since 2016 and intermittently before that.. My PSA started to rise again in 2019 and I was put on Xtandi which brought my PSA down from 30 to 0,17. In December 2021 my PSA went up to 0.4, and my doctor started me on Nubeqa, partly due to the sideeffects from Xtandi. However, the PCA is still rising slowly, in March'22 it was 0.8 and in May'22 it showed 1.0.
I also recently did a PSMA PET scan and nothing can be found. (This is my 3rd.scan since 2016) Apart from a bit fatigue my health is good and I am enjoying life as usual. My doctor suggested we do nothing at this point, just continue Zoladex and Nubeqa, plus regular PET scans.
I would be very grateful to get some views on this from the community.
Jan/Norway
Written by
Jansverr
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"My doctor suggested we do nothing at this point, just continue Zoladex and Nubeqa, plus regular PET scans." I agree with him. Get a PSMA PET/CT again when the PSA value reaches two or three. Nubequa and Xtandi work very similiar, therefore the PSA value does not drop. Nubequa causes fewer side effects.
Sounds like a good plan. Your prostate cancer is a slowly growing type. You may want to wait until you can see something on a scan and then try docetaxel and Provenge (which I think is available in Norway).
Yes I have. A very experienced lady who is very much up to date. In Norway they are not really allowed to prescribe medicines like Xtandi or Nubeqa unless a tumor has been detected. She just said "screw that"😊
Your PSA was 30 before starting Xtandi. Are you saying that despite that PSA 30 they couldn't find any tumor on the PSMA PET scan? Maybe your tumor is PSMA negative? Can you please explain why did they wait until your PSA get to 30 before they gave you Xtandi?
I do not know why they waited, I think this was the time I started to see an oncologist instead of a urologist. Below you will find my diary from that period.I do not know if this makes any sense_
PSA 22.12.15 – 0.97 Bangkok
PSA 16.02.16 – 1.7 Norway
PSA 21.04.16 – 4.1 Norway
MR – Back/abdomen 26.04.16 Norway
Zoladex 29.04.16 – Injection 1/3 Norway *Start 3.rd time after break
"Lymphs 19.10 18 – Checked lymphs Ok Norway SUS"How did they checked your lymphs?
PSMA Pat scan only picks up the PSMA positive cancer. If your cancer is PSMA negative than it can't pick it up. Did they ordered nuclear medicine bone scan or CT scans with contrast? You had a CT scan early. Did they checked your lymphs with the CT? I am just wondering that you had PSA 30 and no scans to pick up anything? Do you have symptoms? (Not side effects from Nubequa.) Do they test on the regular basis your liver function and blood counts and other standard test like calcium etc? Do they test your testosterone levels?
I am doing all that. Sorry, but my records are not all updated. Regarding the lymps, they did find a small thing, smaller than a pea, in my groin, but that has been unchanged for many years so they told me not to worry. No symptoms, except from fatigue and hotflashes. Apetite great.
Sorry for too many questions, but that high PSA combined with no findings on scans is a little bit challenging to understand. If you had a CT with contrast, a nuclear medicine bone scan and a PSMA PET scan than and no findings than the only possibility is that you have lot of micromets under 4mm. Thanks to the flexibility of your oncologist you are receiving the best treatment possible and that is Nubequa. You could have also 6 cycles of docetaxel chemotherapy and in a same time (parallel to it) Provenge. I am not a doctor so I don't know the best timing for the chemotherapy but I believe you could do Provenge as soon as possible. I would myself do Provenge but it is not available in Australia.
Many men have high psa without anything showing up on the scans. I showed a suspected spot on psma-pet scan when my psa was 38. It was not definitive though.
If you still have a prostate could it be infection or inflammation? I am just trying to understand for myself if something like that happens to myself? Did your doctor had a theory about high PSA and no finding on scans? I am just curious.
Would you please be kind enough to tell us your bio. Age? Location? When Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.
I was diagnosed in May 2007 when I was 53 years old. I now live in Stavanger, Norway , but was at the time resident in Bangkok, Thailand. Gleason score was 3/4 and PSA was 12.6. I had robotic prostatectomy in Bangkok Hospital Nov. 2007 and PSA started immediately to rise, Feb.2008 0.15 / April 2008 0.35.I started on Casodex and Zoladex in the end of 2008 and 35 times radiation in 2009. PSA undetectable for 4 years. I have been taking Calsium and D vitamin supplements the whole time. I have mild osteoporosis.
Thank you sir for you quick and detailed reply. It would be a good idea to copy and paste your reply in your bio in you home page for your use and for member's reference.You've been fighting this disease for 15 years so continue fighting until you're at least 88 years old. Keep posting...... and God Bless you....
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