Wrong treatment 11 months in?

[snookchaser]

I'm new here. My wonderful husband was diagnosed June, 2018, T4N1M0 adenocarcinoma, Gleason 9 with pre-tx PSA 27. High volume disease, outside of prostate invading seminal vesicles, neck of bladder, probable wall of lower bowel, 1.8 cm iliac lymph node, metastatic, one borderline external iliac node. Treatment at Moffitt Cancer Center, Tampa, Provenge x 1, Lupron every 3 months, 39 radiation treatments to whole pelvis completed December, 2018. PSA 2.55 in March, 2019, rectal exam large area on right side, reduced.

Should I be concerned PSA not lower? Dr said takes time to reduce PSA to undetectable. No chemotherapy recommended. Any further treatment will be palliative radiation to metastatic areas as they occur. Should I seek a second opinion?

Hubby feels ok except for effects from Lupron.

[Magnus1964]

PSA of 2.55 is great. Can you give more details, i.e. age, general health, does he exercise, eat healthy etc.

[Cmdrdata]

How many PSA tests since June 2018? He should get tested every 3 months at this time. What is the PSA trend since treatment, up or down? If slightly rising after nadir (lowest point) then if I were him (I am not a doctor), I’d consider more aggressive treatment, e.g., chemo. AND, always seek a 2nd, and/or 3rd opinion from an MO specializing in PC.

[snookchaser in reply to Cmdrdata]

At start of radiation, PSA was 44, then 7 mos later PSA 2.55, next PSA in June, 2019. He's in generally good health, somewhat sedentary, no chronic diseases. Not sure nadir is 2.2.

[Cmdrdata in reply to snookchaser]

If I get this correctly , from PSA of 44 -> radiation -> 2.2(nadir) -> 2.55. This is no good. That means there are cancer cells growing and generating PSA. Next PSA test is too far away. With a rising PSA (from 2.2) he should get PSA checks on a 6-week cycle to determine PSA velocity (how fast the PC is growing) and get going with chemo. Chemo is most effective when the tumor burden is small, since it is systemic and hopefully get all the bugs that are not showing in scans but still generating PSA. Are you working with an MO specializing in PC or urologist? If Uro, ditch that one and get a good specialist MO. Someone in this group may be able to give you a list nearby where you live.

[snookchaser in reply to Cmdrdata]

Moffitt in Tampa has many MO's on staff, no Urologist on my husband's case. Have to be more aggressive in asking for a consult with MO.

We've been told only tx going forward is palliative radiation.

I know from this site there are always other options available.

Not sure what PSA nadir is, lowest so far is 2.55.

Thanks for your help.

[Tall_Allen]

Why only one provenge treatment? i think using it in conjunction with radiation was a good idea.

He may be able to get his PSA lower with Zytiga.

[monte1111]

Took me 2 years to get from 59.9 to 0.1 psa. Lot of opinions here. Don't get overwhelmed. Relax, laugh, and watch a good movie. If a 2nd opinion would make you feel better, get a 2nd opinion. Seems to me, so far so good. Enjoy.

[sammamish]

How was he able to get Provenge. It is usually only paid for if you are castrate resistant or have a rising PSA after treatment?

[snookchaser in reply to sammamish]

My mistake, the initial injection was Firmagon not Provenge, then Lupron every 3 months. My ignorance is overwhelming. So much anxiety, have to focus, take a deep breath.