Metastic prostate Cancer Survivors - longevity and quality of life

Posted by ringmastr1 @ringmastr1, Feb 26, 2023

I was just diagnosed at the beginning of January and of course the news hit me hard. I have found a lot of hope in the discussions within this group. I am curious to know how long ago people in this group were diagnosed with metastatic prostate cancer and what your quality of life is like. Right now I have no symptoms from the cancer itself other than weight loss (which I am actively monitoring and dealing with via extra eating) and I have no side effects from the medications the doctors are prescribing. I know that I am at the beginning of this journey and I hope that my current status stays the way it is for many years. We all need to have hope, and I am learning a lot about traditional and new Treatment options.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@round5

Wow,that’s the first I’ve heard of any CT scan helping more than a PSMA PET scan.

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Depends on whether you are working with only a Urologist and not an Oncologist. I decided to work with both. I did this because the contrast showed that the Cancer metastasized on ribs 7 and 9. But the contrast also showed healed cracked ribs, etc. The areas were compatible to metastasized cancer. The CT's of the chest further defined the cancer. However, this is my case and I am sure it each case is different. On Eligard and Xtandi and psa had gone from 20.8 in Nov to 0.4 in Jan. Side effects are loss of energy, some breast swelling shrinking penis and hot flashes. I have also sworn off sugars since Nov and have lost weight. Went from 180 to 168. Height 5'9.

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@round5

Wow,that’s the first I’ve heard of any CT scan helping more than a PSMA PET scan.

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Me too

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On Xtandi and PSA dropped to 4.0 from 9.8 in a month

MRI showed its in spinal but being controlled

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@dsingstock

Thank you will check and tell VCU Cancet center.

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On Xtandi and PSA dropped to 4.0 from 9.8 in a month

MRI showed its in spinal controlled

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Two years after PRT, PSA started to rise from 0.1 to 4.8. Biopsy showed that prostate is clear, but PET scan shows metastasis on some bones and lymphs. Started back on Lupron and half dose of Xtandi. PSA dropped back to 0.1 over first 3 months of Lupron + Xtandi. Has remained steady for another 4 moths. Continuing with monthly blood checks. Have all the usual side effects.

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@ruste

Two years after PRT, PSA started to rise from 0.1 to 4.8. Biopsy showed that prostate is clear, but PET scan shows metastasis on some bones and lymphs. Started back on Lupron and half dose of Xtandi. PSA dropped back to 0.1 over first 3 months of Lupron + Xtandi. Has remained steady for another 4 moths. Continuing with monthly blood checks. Have all the usual side effects.

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What are your side effects?

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@markheuer

What are your side effects?

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Fatigue and hot flashes are the most prevalent side effects. I also am anemic from a blood cancer (myleodysplastic syndrome, MDS) which probably accounts for a significant portion of the fatigue. Unfortunately, having two different cancers seems to preclude me from participating in any clinical trials and some treatment plans.

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@ruste

Fatigue and hot flashes are the most prevalent side effects. I also am anemic from a blood cancer (myleodysplastic syndrome, MDS) which probably accounts for a significant portion of the fatigue. Unfortunately, having two different cancers seems to preclude me from participating in any clinical trials and some treatment plans.

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Also, my weight is holding steady but seems to be sinking to my belly. Don't know if that is a side effect of the Lupron, or maybe just old age and lifestyle.

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One month on Xtandi brought my PSA from 9.8 to 4.0 and going down

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Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov, went to 0.4 in Jan. Was ln Casodex Nov and Dec. Felt good then. After Eligard 6 month injection and Xtandi noticed a big slow down in energy, being tired, hot flashes, and with the loss of testosterone, my testicles and penis have shrunk making it difficult to pee. This morning noticed hair in the shower after washing it. Is all of this normal? Since my psa was 0.4 I intend to see if the Doc's will maybe stop the Eligard but not the Xtandi for 6 months if the psa is much lower than the 0.4 and see what happens. My prostate cancer returned after 12 years as stage 4 and metastasized on ribs 7 and 9. Amy comments? Thanks.

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