Finished my 6th and final Pluvicto and am now getting lab results. I see that somehow I neglected to put results after #5 -- may have been distracted by doctors freaking out that my kidney function was going down and my calcium shot up. My nuclear medicine doc made a judgement call to give me a full dose for #6 after some debate, I was told.
History:
Aug 16: PSA 99.7
Aug 21: Pluvicto #1
Sep 11: PSA 106
Sep 28: PSA 91.8
Oct 05: Pluvicto #2
Oct 25: PSA 57.8
Nov 09: PSA 47.4
Nov 16: Pluvicto #3
Dec 06: PSA 31.8
Dec 28: PSA 26.5
Jan 04: Pluvicto #4
Jan 24: PSA 21.2
Feb 08: PSA 14.4
Feb 12: Pluvicto #5
Mar 04: PSA 12.3
Mar 21: PSA 12.3
Mar 25: Pluvicto #6
Apr 11: PSA 9.33
Apr 25: PSA 7.99
Side effects:
• A little tired after the week of steroids ended. Hope to get back to exercising and increasing stamina.
I'll be getting labs frequently to make sure my kidney function and calcium continue toward normal. After getting a tie-breaker opinion I will go back on Xgeva after I've seen my dentist.
I feel great except for what was probably a gallbladder attack a week ago. No official diagnosis because I live alone and when you're too sick to do anything, like getting to urgent care and sitting in a room full of sick people for a couple of hours, you just have to tough it out and then report it to your PCP. Seem to be getting better overall, though.
So now I wait for when my PSA to goes back up and then see what is treatment is next since taxines are not for me.
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Miccoman
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I did not read your bio so please ignore my question if you are already on it. Are you taking enzalutamide, or apalutamide and darolutamide ? If NO then may be you should start.
I was on Xtandi/enzalutamide + Lupron for 7 years. When that stopped working I did sipuleucel-T (Provenge) immunotherapy. Then did chemo but had to stop Docetaxel after 4 infusions.
My MO has not mentioned going back on Xtandi as an option at this point. They may want to wait until my kidney function is back to normal. I will see him in early June and ask about future treatments (and when we have a better handle on my kidney function).
Why did you have to stop the docetaxel? I'm curious of EVERYONE'S responses to various chemo's. I'm compiling data in real time that I hope will help with my decision when ADT / Zytiga Prednisone stop being effective. Real life accounts are what I trust...NOT the "s o c" BS I'll get from Dr.'s and Pretend doctors.
Well, after infusion #1 my mouth exploded into sores and they gave me a mouthwash of pepto bismo and lidocane so I could eat. After #2 I had another side effect -- in short by #4 I had every side effect except passing out (my mind was effed so I don't remember it very clearly) but I did pass out a couple of weeks afterward. I was living alone and had been told, in no uncertain terms, to isolate by NP and nurse so was going through this by myself. Turns out my immune system was OK throughout and I didn't need to isolate. That's when I changed MOs.
Hello can you share the Glomerular Filtration Rate (GFR) for your kidneys when the doctors were concerned during your treatment? Curious as to the that number as my kidneys are working at 20% of normal. I’m thinking I’m not going to be a candidate someday for LU-177
Not sure what number you're asking for. Before treatment began my eGFR was 63. It went up initially, then came back down to the 60s. After the 4th injection it dropped to 57 and by the time I was due for the 6th (and last) injection it was 44 (this is when the doctors were concerned. 3 weeks after it was 42 and 5 weeks out it's 43. Hope this helps.
Thank you for the reply. Yes your numbers show the kidneys getting hammered by the treatment and I can see why the doctors were so concerned.
I’m at 24 and all due to PC in the abdomen that pressed on the Ureters and damaged the kidneys not allowing them to drain as normal into the bladder. I can no longer have contrast and that doesn’t help with the PC fight, FYI 10 is when a person needs dialysis per my kidney doctor. The Ureters are so compressed that I can’t have a stent. They have done Nephrostomy Tubes. So heads up on surveillance on the kidneys. Keep them healthy for the upcoming contrast you will need. Life becomes more difficult with Nephrostomy Tubes so avoid the damage as best as you can.
BTW, I only have one kidney. The other was removed in 2015 due to renal cell carcinoma that was confined to the right kidney. So I will be very diligent in my water consumption and I track all my numbers with great interest in direction and trends.
sorry I was assuming you had 2. In that case no wonder the numbers were showing negative as they were. And good you have a goal set. Protect that remaining kidney.
I had to be proactive recently with a RN and Doctor for an MRI with and without out contrast. They failed to look at a current blood draw. Thank goodness for the patient portal as I was totally aware at that moment no way could I have contrast. They argued it was imperative I have the contrast. I said obviously you both haven’t looked at my current blood draw. It was priceless to see the look on their face after reading the monitor. Doctor said yes no way should you have contrast. The nurse was the only one to apologize.
Remember Nurses and Doctors err in this life also. Yes be proactive 👍
Wow that’s great miccoman, 99.7 down to 8 is pretty remarkable, hope it keeps coming Down. Keep all your options open and hopefully you’ll get it down to 1…😁🍷
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