11 anniversaries since diagnosis of stage 4 prostate cancer

Posted by mccsjm @mccsjm, May 25 12:47am

Diagnosed at 63, I did not have the confidence at that time to believe I would live another 10 years. Yet, I just completed another follow-up visit in the past two weeks. My semiannual routine includes a blood draw for PSA and metabolic panel, followed by a visit to my oncologist's office. Given the many years of hormone therapy, they added a DEXA scan to check my bones.

Overall, they are happy with the results. PSA remains undetectable (might not be the most sensitive assay. My lipid levels remain elevated, so lipid-lowering medication may be inevitable in the near future, but it's not the end of the world. I hope my experience can encourage my fellow warriors. Living with prostate cancer is entirely achievable.

I also learned that the website for clinical trial matching that my oncologist pointed me to previously (inforeach.org) has added search for treatments recommended by clinical guidelines. It's quite intriguing as you can check if your treatment is consistent with the standard of care. Sharing this information for anyone who may want to check it out.

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

@potbelly1957

I'm in my fifth year of prostate cancer, testosterone suppression no longer works. What type of treatment are you using?

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I'm so sorry to hear that.

Are you on an ARSI (like Erleada or Xtandi) in addition to the traditional ADT (like Firmagon, Lupron, or Orgovyx), or is that contraindicated for your health situation?

ARSI's have been the hero treatment of the past 5+ years, significantly extending the effective period of ADT, but obviously they're not 100%.

In any case, my onco team told me there are many more treatment options available if ADT and ARSIs start becoming less effective, so I hope things turn out well for you.

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@potbelly1957

I'm in my fifth year of prostate cancer, testosterone suppression no longer works. What type of treatment are you using?

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might be a question for another thread. Is testosterone suppression really the culprit. Maybe the level of the cancer you throw anything at it? Dumb question?

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@tuckerp

might be a question for another thread. Is testosterone suppression really the culprit. Maybe the level of the cancer you throw anything at it? Dumb question?

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Testosterone suppression worked, mostly, for 3.5 years. After going off treatment, Abiraterone brought PSA down to 7 from 12.5. A month later, it's back up to 11. It appears the testosterone suppression no longer works.

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@northoftheborder

I'm so sorry to hear that.

Are you on an ARSI (like Erleada or Xtandi) in addition to the traditional ADT (like Firmagon, Lupron, or Orgovyx), or is that contraindicated for your health situation?

ARSI's have been the hero treatment of the past 5+ years, significantly extending the effective period of ADT, but obviously they're not 100%.

In any case, my onco team told me there are many more treatment options available if ADT and ARSIs start becoming less effective, so I hope things turn out well for you.

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I don't even know what ARSI means! I'll look it up and ask my oncologist. Thanks.

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@potbelly1957

Testosterone suppression worked, mostly, for 3.5 years. After going off treatment, Abiraterone brought PSA down to 7 from 12.5. A month later, it's back up to 11. It appears the testosterone suppression no longer works.

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I somewhat rushed to surgery on mine because a friend of mine was taking Test. suppression drug for high PSA. Lupron I think. Prostate cancer and its ED side effect is bad enough but then take any male hormone out as well. They even talk about castration. Made me wonder what would be left if your a healthy 68 yr old with no issues. I tried to separate my male ego out of the equation but I am male. I had one out of 12 samples nothing in the margins and 1.2 PSA. One overriding factor for me was maybe I could get it all with no other treatments. I also did a lot of research on whether Test reduction really helped. I had LARP surgery and ended up with ED. But my Test is healthy. I still enjoy the thought of a sexual encounter. My energy is good. Just wondering since the comment came up.

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@potbelly1957

Testosterone suppression worked, mostly, for 3.5 years. After going off treatment, Abiraterone brought PSA down to 7 from 12.5. A month later, it's back up to 11. It appears the testosterone suppression no longer works.

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So if I understand correctly, you were on androgen-deprivation therapy (ADT) for 3½ years, then your oncologist had you stop it, and only then your PSA started rising? And once it rose, your oncologist put you on Abiraterone (Zytiga) and Prednisone to try to bring it down again, but it's not working?

I'm beyond personal experience here, and maybe others can help more, but definitely talk to your team about newer treatment strategies. Zytiga is neither ADT nor ARSI but a biosynthesis inhibitor for castrate-resistant PCa (as far as I understand from a quick Google), so you might be able to combine it with Erleada or Xtandi to improve its effectiveness — again, these are just questions to ask your doctor, not informed answers.

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@potbelly1957

I'm in my fifth year of prostate cancer, testosterone suppression no longer works. What type of treatment are you using?

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Hi potbelly1957, I have been using ADT and bicalutamide since completing pelvic IMRT in 2014 (high dose: prostate, adjacent tissues, lymph nodes, bones). Please note the hormone therapy I'm on is very outdated today. When I started it, 2nd generation antiandrogens were not available and abiraterone was approved only for castration resistant disease. My oncologist just feels there's no compelling reason to switch to one of the newer drugs (reserved for the next step if my PSA rises).

What treatment were you on? Have your oncologist discussed with you about enzalutamide, arbiraterone, or radiopharmaceuticals?

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@potbelly1957

Testosterone suppression worked, mostly, for 3.5 years. After going off treatment, Abiraterone brought PSA down to 7 from 12.5. A month later, it's back up to 11. It appears the testosterone suppression no longer works.

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I see you have tried abiraterone. Based on what I've learnt, Lu177 (Pluvicto) may be promising if all of your metastases show uptake on PSMA PET. Others include docetaxel or enzalutamide (or another 2nd generation antiandrogen). If feasible, consider getting a gene mutation test to guide future treatments. If you're not yet receiving care at a major cancer center, it might be time to consider that as treatment becomes more specialized after the first/second line therapies. Good luck!

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@wellness100

You broke what Dr. Scholz calls the threshold, PSA < 0.1 . That is considered a good outcome. It seems to take 6 months to get to that point, which is a little over the 5 months. Still not too far off. It may be that the doctor added Chemo because your PSA was not falling fast enough after surgery. May be it is more appropriate to question why surgery if he was intended to give the triple treatment? It would have spared a lot of expense and negative physical effect. Put another way, if you have started off with triplet right from the get go, without surgery, would you have arrived at the same result, or e perhaps even sooner, say within 5 months? It bears thinking about.
Dont mind me. I am just another layman trying to make some sense.

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Seemed that only choices being promoted after biopsies were radiation or surgery and the cautionary tale that radiation first would likely preclude subsequent surgical Sucess.I regret not studying adt first as you note skipping losses of function pain etc

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You are a Field Marshal leading us into battle. I once had set my sights on living happily for another five years, but after reading your inspiring words, I've extended my goal to another ten years. Your encouragement is a beacon for all of us. Perhaps in a few years, I'll realign my goal to 15 years. May you continue to inspire and uplift us all—please keep posting!

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