Same story as last 3wk checkup! Alk Phos decreasing and PSA considered stable

Well we got my dad’s results back yesterday before his 4th Taxotere infusion. Still so confused! His Alk Phos has looked like this:

Before each infusion:

1st-1500

2nd-650

3rd-300

BUT-his PSA looks like this:

1st-20

2nd-21

3rd-22

What is going on? I don’t understand how he is having such dynamic changes in Alk Phos but the PSA is doing this? To be honest his oncologist seemed bewildered by this as well. He looks great, he’s feeling well, good appetite, gaining weight back and having very minor side effects to the Taxotere. I am so disappointed that the PSA is not responding.

Any thoughts? The oncologists doesn’t feel that the Taxotere is failing and he’s staying the course with giving him 6 infusions. He just had his 4th one yesterday. He considers his PSA stable.

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I'm surprised your oncologist is bewildered by this. Not all prostate cancer produces PSA and it looks like he has some. If I were in that situation, I would get a tissue sample taken and have it tested to see what's going on there. Good chance there's some "small cell" (nueroendocrine) characteristics in the cancer which would explain the low PSA. There are also blood markers for this type of cancer: Chromogranin A and NSE that can be tested. These will not always be elevated.

It also makes sense that the chemo would be working since these cancer cells that don't make PSA do not have he androgen receptor and are not sensitive to hormone-based treatments such as Lupron, Zytiga or Xtandi, etc.

The most important thing is that treatment he's on seems to be working.

I would suggest getting an opinion from another doctor. That's just what I would do. Good luck.

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Thank you for your reply!

We have a second opinion scheduled on Dec 10th with a Dr in Omaha that has the Lu-177.

This scares me so bad! Isn’t neuroendocrine very deadly?? My worst fear was it to be this type.

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It's positive that his ALK PHOS is coming down, that's a really good sign that the treatment is working. What about symptoms such as pain? How did he respond to initial ADT treatment (Lupron, etc.)?

What I've done when in these kind of scary situations is to just focus on one step at a time, don't look too far into the future. Just look at what's the next thing. That's helped me a lot. I know how hard it is from my own experience. Wishing the best for him.

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He’s feeling great! No pain at all, eating well, has good energy. He owns his own business and goes to work every day. He’s 76 and in great shape. He did great on Zytiga for about 7 months. His PSA was initially 64 at diagnosis and it brought it down to .2, but it started tripling every 3wks- switched to Xtandi and he declined rapidly on Xtandi. Xtandi did nothing but make him much worse. He was only on that for a couple of months. Then we started Taxotere and immediately started feeling better. I couldn’t believe how rapidly he declined after Zytiga because he was doing great on that and then when started Xtandi it was a horrible and fast decline.

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That's positive that he had a decent response to androgen deprivation. Unfortunately, the cancer evolves so we have to try to find out how it's changing and adjust the treatments accordingly. That's the direction I'll be heading when Zytiga eventually fails for me. I would recommend having some testing done on the cancer to see what's going on.

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Thank you so much for your advice and your replies. We appreciate it! I will be talking to the Dr about this when we go for the second opinion.

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Has he any imaging done recently? If not, that's another thing to discuss.

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That’s a bumpy road that he’s been on. Hope for some smoother sailing ahead.. He s in the thick of the battle right now.. much love

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Dear daughter , do not let yourself feed on the fear.. of not knowing ..and please don’t take everything solely upon your shoulders.. He will get correct treatment...but all #4 APC is in fact deadly to us all at some point..most of us here have been in its death grip . Seriously! worry is counterproductive to it all.. APC is a battle on all fronts... Your love is the best medicine....Prayers to your papa to overcome the internal beast that we all battle. I personally admire anyone that is like you( seeking help) for another. Parents are #1 in our development.. Bless you❤️

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Thanks Lulu700. My dad is everything to me!

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We only have one Dad.. Hope is contagious ,so keep it up. I wasn’t able to be near my dad when he passed 20yrs, one of more than a few regrets that I’ve pondered.. Enjoy him.

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He ‘s getting through it ..keep plugging alone. Sorry for the sufferage...With time the chemo should work Keep his spirits up.. recovery after treatments will come..It a frightening endevour .He is doing what must be done.. Spend quality time with your father during his torment.. Peace to you all throughout this turmoil. Scott