Pain and blood in urine after long walks

[dvcarola2]

My husband experiences pain and some blood spots in his urine after long walks. Im amazed at how some of the warriors here can still run when my husband cant even do long walks. His latest pet scan showed his prostate size is back to normal (about 9grams now) so we dont know whats causing the pain or the blood spots. He has stage 4 gleason 9, had zytiga, chemo and now back to zytiga along with eligard and xgeva. He had TURP 1.5 yrs ago upon diagnosis. Current PSA is 0.7 but i believe his pca doesnt put out much PSA considering that his latest pet scan still shows bone mets (spine, ribs, pelvis) and lymph nodes (para aortic, pelvic). Our onco gave antibiotics but im not sure if that will help in the long term.

I would love to hear similar experiences or any suggestions. Thank you!

[Tall_Allen]

The blood spots may be from scar tissue breaking off from the TURP or it may be from cancer spreading up the line. Either way, if it resolves on its own, and the blood is just some spots, it's not a big problem. If it's causing pain, a urologist can do a cystoscopy. But sometimes a cystoscopy will dislodge even more scar tissue.

Cabazitaxel has been found to be a good third line therapy:

pcnrv.blogspot.com/2019/12/...

Or he can try Xofigo now for the bone metastases. Does Singapore have Lu-177-PSMA therapy?

[dvcarola2 in reply to Tall_Allen]

Thanks TA for the suggestions. We will observe if it resolves. Btw, Xtandi, Cabazitaxel, Lu-177 were also presented as next-in-line treatments by our onco. Should we go through and try Xtandi first and then cabazitaxel before Lu-177? We have Lu-177 here in the Philippines but its sooo expensive. First shot is around $10k and not sure how many shots is needed. Ive read not everybody responds well with Lu-177 arghhh.

Our uro is more aggressive and he wants us to try Lu-177 right away and see what happens. But he said, we may not be able to go back to Xtandi or Cabazitaxel? Is that really true?

Appreciate all the inputs!

[Tall_Allen in reply to dvcarola2]

Yes, it is expensive. It's effectiveness depends on how PSMA-avid the cancer is. You can learn that from a PSMA PET scan. I don't know why anyone couldn't have cabazitaxel or Xtandi afterwards.

[dvcarola2 in reply to Tall_Allen]

Thank you so much TA, i think my husband’s pca is very much PSMA-avid. The reason why our uro-onco said xtandi or cabazitaxel may not work after Lu-177 is because Lu-177 is much stronger than the 2 (?)

[Tall_Allen in reply to dvcarola2]

You can’t know without a pet scan or ihc.

[landcrab]

Is it possible it could be kidney or bladder stone. I had a bladder stone that caused blood loss especially after going for a jog.

[dvcarola2 in reply to landcrab]

Thank you, yes he passed a kidney stone in december after some series of IVC which we showed to our urologist in our doctor’s visit last wk. But latest CT scan doesnt show any stones left. We stopped doing IVC also.

[Hidden in reply to dvcarola2]

W HU at a December to remember . Poor guy! Good that the stones are gone .

[tom67inMA]

I recently had painful urination, then blood in urine after exercise. Undetectable PSA, cystoscope clear except for friable tissue in prostate. Turned out to be neuroendocrine PCa growing in prostate, bladder, and liver. The bladder and liver tumors showed up on my CT scan, so if there's nothing suspicious on your husband's is probably not that. I just seem to be a magnet for low probability outcomes, which works both ways.

[dvcarola2 in reply to tom67inMA]

Thank you for sharing your experience Tom. I hope and pray its not developing into neuroendocrine. We have regular PSMA pet scan every 3-4months since diagnosis and so far only bone mets and lymph nodes lit up. Some reduced in size and numbers since diagnosis and there are no new ones so far. The next one is due in March so we will have to wait and see.

Can you please share how to test for neuroendocrine? Does my husband need to be biopsied again or can it be detected thru blood test only? Thank you

[tom67inMA in reply to dvcarola2]

Some show up on blood tests using chromogranin-a, but not mine. Biopsy of liver showed neuroendocrine of unknown origin. FDG PET scan showed activity in liver, bladder, prostate, and warm spots in a few bones. MO thinks this developed separately from original prostate cancer, and I tend to agree.

[dvcarola2 in reply to tom67inMA]

Ok great help! Will discuss with our onco after results of our next F18-Pet/CT PSMA scan next month. All the best on your journey!