what now

[Ian996]

It has been a tough year for me early august I had sepsis in my left kidney

that laid me out for a couple of weeks

I was in a clinical trial for Lu177 in april but it wasnt clearing from my kidneys and there was no evidence that it was mitigating my metastisis So my participation was stopped.I had a Ga68 PSMA pet scan ( at my expense) On aug shortly after stopping the Lu177.

The scan showed several mets including mets on my C2 and C3 vertabrea. Note these mets did not show up on Bone scans or CT scans that were part of the LU trial.

At this point shit hit the fan with the radiation oncologists and they got me in for EBRT to provide palliative treatment to the C2 and C3 mets even though I had no pain. No SBRT to ablate the mets because of the proximity to my spinal cord

I started chemo ( docetaxel) sept 20

Late October I was in the ER with a lung infection and pneumonia My second round of chemo has been delayed until Nov 19 2024

And now my PSA is up to 579 Now I am getting really nervous What to Do??

[middlejoel]

Man, I feel for you. What's your pain level?

What does your onco recommend?

[Ian996 in reply to middlejoel]

No pain I guess I am lucky

My MO is very old school,

Chemo she doesnt see the purpose of PSMA PET Scans either which is why I pay for them through a private clinc

[Islandboy2021 in reply to Ian996]

That is disappointing that the Lu 177 didn’t work for you. I was trying to get on a trial for Lu 177 last year in Vancouver but it was full.

The only option I had was to take chemo again. They gave me 7 Docetaxel treatments then 10 cabazitaxel. I made sure I had Grastofil injections during chemotherapy to prevent any serious side effects. My PSA dropped and rose though out and now is over 160.

I have since stopped chemotherapy and waiting for another Lu 177 trial to start. I have no other options unless I pay for them.

I am at the stage where my bones and body are weak and I have to manage pain.

I am only 60 years old.

[Ian996 in reply to Islandboy2021]

I was in the Vancouver trial but my kidneys couldnt handle it the Lu wasnt clearing fast enough between infusions and my neutrophils hit rock bottom

Then I started Docetaxel and my PSA rose after every treatment I was scheduled to have treatment # 5 tomorrow but the every increasing PSA rise was evidence enough that it wasnt working and again really low neutrophils RBC and WBC and platelets all very low

[Ian996 in reply to Islandboy2021]

Are with BCC at VGH or Surrey

Who is your MO

[Islandboy2021]

I live on the island and my main oncologist is in Victoria. I had to get referred to BC Cancer in Vancouver so I could get on any trials. I have only had appointments with the trial doctors in Vancouver.

Make you get the Grastofil injections when you get chemo. Switch to cabaxitaxel if you can. I had less side effects than Docetaxel.