Low psa but advancing cancer and symptoms ?

[Stumpgirl]

Good morning from rainy Cleveland Ohio. I wanted to see if anyone had a similar situation as the one my father is facing . He has now moved on from Stampede Trial and Xtandi. He just finished radiation (2nd time) and will he starting on Docetaxil Thursday.

In between Xytiga and Xtandi, his psa numbers started going up and they made the choice to change his course of treatment but at the blood draw just before his Xtandi, his psa halved . They moved forward anyway. About six months ago, after 2 years on Xtandi, his symptoms started worsening . He had two bone fractures and a lot of pain. His psa had risen twice but is still relatively low at 2.5 but the doctor decided it was time to move onto chemo. Since then, his psa has not risen. He is, however, in a lot of pain and often experiencing fever and chills. What would be the reason for this? The bone scans before his last radiation didn’t show a ton of new involvement. It’s so confusing and scary

[Hidden]

Has he had a biospy to take a closer look at the cancer? It may help his doctors to better direct his treatments.

[Stumpgirl in reply to Hidden]

I think he went through genetics but it’s a great follow up question. Thank you

[Tall_Allen]

Is he in the UK? (that's where STAMPEDE is) Is he taking Zometa or Xgeva to strengthen his bones? He should be getting Neulasta to prevent febrile neutropenia.

[Stumpgirl in reply to Tall_Allen]

US. I will have my mom ask Thursday . Thank you

[Tall_Allen in reply to Stumpgirl]

How did he get on the STAMPEDE trial?

[lewicki in reply to Tall_Allen]

As I go along on this journey I seem to learn what was not offered and is not being offered.Upon seeing an Onco at a famous cancer center I was never offered anything for my bones. Perhaps because I was terminal their is no sense to getting it. But not to long ago I had the bone scan and low and behold my bone density is -3. So since than with a new doctor I have had three trans fusions for my bones . She seems to forget need for more or do not need more but no bone scan to find out and none done in the last three months. Seeing her soon and will discuss. So far I am < 0.1 from my last of four treatments at the University of Heidelberg ending 7/2020. Did AC-225 and LU-177. I was told that my bone density may take years to recover if at all.

My question should I still be be receiving regular trans fusions treatments for the bones? I am not doing ADT at this time since 11/2020. Thanks

[Tall_Allen in reply to lewicki]

You can get a DEXA scan to find out your BMD. Why are you off ADT?

[lewicki in reply to Tall_Allen]

I have been battling this for 21 years. Actually needed a break. Also, Onco and Uro suggested it. Watching it close to get back on if PSA rises and wonder if I should do so soon just as a precaution. Many really seeing doctors that may not be keeping up with current treatments. I really am feeling much better and T is still at 4 two weeks ago.

[lewicki in reply to lewicki]

Not sure what the scan I had was a DEXA scan . Will ask Onco.

[Todd1963]

Unfortunately Prostate cancer can get to a place where in no longer produces PSA. PSA is just a number and is not always indicative of tumor burden. It is true mostly that PSA up cancer growing PSA down cancer not growing. More like guidelines.

[ArabianNights]

Hi. Fellow daughter here. I wanted to share my experience because it seems similar to your dads. They are also close in age.

My dads PSA also remained low and his cancer progressed. I think we waited too long to switch to Docetaxel - he was getting weaker. I’m glad you switched quickly. You made the right decision.

Regarding fevers, my dad also experienced this. It seems to be rare to have “cancer fevers” when it comes to prostate cancer. He should be tested for infection. However, in my dads case, no infection or cause was found - this is “fever of unknown origin” and by elimination it was associated with cancer. In this case, Tylenol was prescribed but I found the Tylenol does not work. Through my own research on neoplastic fevers, I found Naproxen to be the best solution. I have been testing that on my dad these past few days and no fevers for 3 days now (praying for more good days).

I don’t necessarily think this is your dads situation but wanted to share it in case. It took us more than a month of daily fevers to control it to any degree.

I would look at your dads inflammatory markers (ferritin, ESR, CRP etc) through blood tests. If these are high, than NSAIDS or Naproxen specifically seemed to be better than Tylenol for controlling fevers and chills.