Testosterone: Is everyone's level in the low numbers?

Posted by stevecando54 @stevecando54, Sep 20 6:00am

Recap, I have stage 4 Metastasized to the bone. 18 months in. Had chemo, get Firmagon monthly, Xgeva quarterly, take Abiraterone and Prednisone daily. There are always posts on having fatigue on this or that med. I search low testosterone and bang can cause fatigue. Last test had my testosterone at < 3. Is everyone's level in the low numbers? Work day I get about 9-10k steps, weekend mostly 3-5. I get we need to push forward but don't understand how some are running marathons. Thank you and Best to all.

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someone related to me 79 years old fit and healthy, history of shingles. stable blood pressure developed urine retention admitted to A and E revealed PSA 5.84, Prostate volume 157 Gleason 5+5= 10 with features favouring a small cell neuroendocrine carcinoma, PET scan left pelvic sidewall nodal lesion seen but no extra pelvic or any metastatic disease elsewhere. started hormonal treatment for month followed by monthly injection, following that catheter got blocked and lots of lumps came out and rectal pain. the question what is the best treatment? is chemo therapy safe or radiation would be better? what is the life span? thanks

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Dear jeffmarc,
Thanks for such a prompt and encouraging reply. In the last few minutes, insurance denied Erleada so I'm on Xtandi. Thanks too for the mention of Nubeqa (Darolutamide). My Gleason was 4+3. It's a long road ahead but I'm happy the dr and staff agreed a plan of treatment. The clarity helps. I look forward to monitoring Xtandi and Orgovyx. Five months ago none of this existed and I still have no symptoms. How's that for faith in modern medicine? Best to all.

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@faten

someone related to me 79 years old fit and healthy, history of shingles. stable blood pressure developed urine retention admitted to A and E revealed PSA 5.84, Prostate volume 157 Gleason 5+5= 10 with features favouring a small cell neuroendocrine carcinoma, PET scan left pelvic sidewall nodal lesion seen but no extra pelvic or any metastatic disease elsewhere. started hormonal treatment for month followed by monthly injection, following that catheter got blocked and lots of lumps came out and rectal pain. the question what is the best treatment? is chemo therapy safe or radiation would be better? what is the life span? thanks

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Unfortunately, there are a few options for neuroendocrine cancer. There are some chemo with platinum options, but they don’t give long-term results and the side effects are pretty rough. There are a couple of studies working on neuroendocrine cancer. UC Davis has a study that is having people join it right now, but you need to live near Sacramento, California, or be able to get there. There’s a second study run with a doctor from UC San Francisco, but it is only accepting women with neuroendocrine breast cancer right now.

Problem with neuroendocrine cancer, people don’t have a long life span. There are just no treatments equal to what they have for regular prostate cancer.

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@jeffmarc

Unfortunately, there are a few options for neuroendocrine cancer. There are some chemo with platinum options, but they don’t give long-term results and the side effects are pretty rough. There are a couple of studies working on neuroendocrine cancer. UC Davis has a study that is having people join it right now, but you need to live near Sacramento, California, or be able to get there. There’s a second study run with a doctor from UC San Francisco, but it is only accepting women with neuroendocrine breast cancer right now.

Problem with neuroendocrine cancer, people don’t have a long life span. There are just no treatments equal to what they have for regular prostate cancer.

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There is a phase II trial underway now for using Apalutamide (Erleada) and Cetrelimab (Libtayo) together to treat neuroendocrine cancer, following on results of earlier, smaller studies. Unfortunately, the trial is no longer accepting new participants, and even if it does turn out to be successful, it will probably be a few years before it's generally available as a treatment.
https://www.cancer.gov/research/participate/clinical-trials-search/v?id=NCI-2021-05986

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@northoftheborder

There is a phase II trial underway now for using Apalutamide (Erleada) and Cetrelimab (Libtayo) together to treat neuroendocrine cancer, following on results of earlier, smaller studies. Unfortunately, the trial is no longer accepting new participants, and even if it does turn out to be successful, it will probably be a few years before it's generally available as a treatment.
https://www.cancer.gov/research/participate/clinical-trials-search/v?id=NCI-2021-05986

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Someone I know is getting a scan to see if qualifies for the neuroendocrine study at UC Davis. At first his hemoglobin was below eight so he wasn’t eligible, but he’s gotten it up with blood transfusions so he’s now getting the scan.

Not sure if this is the same study you’re talking about, but they are taking patients for this one.

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@kmat

Dear jeffmarc,
Thanks for such a prompt and encouraging reply. In the last few minutes, insurance denied Erleada so I'm on Xtandi. Thanks too for the mention of Nubeqa (Darolutamide). My Gleason was 4+3. It's a long road ahead but I'm happy the dr and staff agreed a plan of treatment. The clarity helps. I look forward to monitoring Xtandi and Orgovyx. Five months ago none of this existed and I still have no symptoms. How's that for faith in modern medicine? Best to all.

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14 1/2 years ago, I had a third biopsy and they found a couple of the samples were 3+4 prostate cancer. I had surgery a few months later and it was actually 4+3. Two years ago I found out I was BRCA2, which sort of explains why it keeps coming back, four relapses so far. I will be 77 real soon.

1.5 years ago, my brother had 4+3 in a biopsy. At 76 he had radiation and so far nothing has come back. He does not have BRCA2 but my father died of prostate cancer so he had a propensity for it.

They didn’t have a decipher score back then. And I didn’t go on any drugs for about six years. Had to have radiation 3 1/2 years after my surgery, still no drugs for another 2 1/2 years when I finally was put on Lupron because my PSA started rising.

I’m explaining all of this because you are a 4+3 and 77 years old. You are so much more likely to die of some thing else rather than prostate cancer. There are so many different things they can do to treat you, new technologies are coming up all the time. Look forward to the many years you will have. The only thing you have to be concerned with are the side effects of the drugs you take not the chance that you’re gonna die soon from PC.

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@jeffmarc

14 1/2 years ago, I had a third biopsy and they found a couple of the samples were 3+4 prostate cancer. I had surgery a few months later and it was actually 4+3. Two years ago I found out I was BRCA2, which sort of explains why it keeps coming back, four relapses so far. I will be 77 real soon.

1.5 years ago, my brother had 4+3 in a biopsy. At 76 he had radiation and so far nothing has come back. He does not have BRCA2 but my father died of prostate cancer so he had a propensity for it.

They didn’t have a decipher score back then. And I didn’t go on any drugs for about six years. Had to have radiation 3 1/2 years after my surgery, still no drugs for another 2 1/2 years when I finally was put on Lupron because my PSA started rising.

I’m explaining all of this because you are a 4+3 and 77 years old. You are so much more likely to die of some thing else rather than prostate cancer. There are so many different things they can do to treat you, new technologies are coming up all the time. Look forward to the many years you will have. The only thing you have to be concerned with are the side effects of the drugs you take not the chance that you’re gonna die soon from PC.

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That's all good advice. I asked my new oncologist on Monday why he thought I didn't have a Decipher Test or Gleason score from when I was diagnosed in 2021.

He told me that they're used primarily to avoid *over*-treating people with early-stage prostate cancer. Since mine had already metastasised to my spine when it was discovered, there was little point trying to determine how likely it was to metastasise. 🙂

Also, my prostate was never biopsied; they did the biopsy on my spinal lesion (detected via MRI) and determined that it was of prostatic origin; that, combined with a PSA of 67 and a quick DRE to confirm, was enough for a stage 4 diagnosis.

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@jeffmarc

14 1/2 years ago, I had a third biopsy and they found a couple of the samples were 3+4 prostate cancer. I had surgery a few months later and it was actually 4+3. Two years ago I found out I was BRCA2, which sort of explains why it keeps coming back, four relapses so far. I will be 77 real soon.

1.5 years ago, my brother had 4+3 in a biopsy. At 76 he had radiation and so far nothing has come back. He does not have BRCA2 but my father died of prostate cancer so he had a propensity for it.

They didn’t have a decipher score back then. And I didn’t go on any drugs for about six years. Had to have radiation 3 1/2 years after my surgery, still no drugs for another 2 1/2 years when I finally was put on Lupron because my PSA started rising.

I’m explaining all of this because you are a 4+3 and 77 years old. You are so much more likely to die of some thing else rather than prostate cancer. There are so many different things they can do to treat you, new technologies are coming up all the time. Look forward to the many years you will have. The only thing you have to be concerned with are the side effects of the drugs you take not the chance that you’re gonna die soon from PC.

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Dear jeffmarc...thanks again for sharing a painful and personal history of prostate cancer. And for your knowledgeable encouragement which is very, very welcome. I'm trying to take one day at a time realizing that these two hormone treatment tablets could produce quite the side effects. But, as you suggest, there's so much to live for. Keep well. Here in Tampa we're expecting a hurricane over next couple of days.

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Is radiation best treatment alternative for prostate cancer. Patient is 89 years old.

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My friend has been diagnosed with Prostate Cancer.

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