I saw my MO last week, and unfortunately PSA is starting to rise again after Docetaxal Round 8
- After Round 6, PSA had declined from 47 pre-chemo to 1.8
- After Round 7 it had ticked up to 2.34
After Round 8, another increase to 3.1
Well docetaxal killed of 95% of the bastards and PSA is back where it was March 2017, so I guess that counts as a good outcome.
MO said "Let's finish Round 9 (due in 3 days) and if it goes up again we start Abi or Enza."
Now I would prefer Enza. Since I started Docetaxal + pred I have put on 8kg. Pred makes you hungry! I have previously lost 20kg since I started ADT in May 2017 based on vegan diet and daily exercise and feel great despite ongoing ADT, chemo and rising PSA. I would love to get my weight back down, and of course Abi comes hand in hand in with Pred. Yuck!!
But more particularly I want a course of Lutetium. I enquired about this last year before I stared ADT but was warned away - I was told that there was a high risk of Leukemia in 3 years. BUT - all my mets are are soft tissue, in liver and mysentry, bone scan is clear, so I believe that there should be little uptake of lutetium in bones hence small risk of leukemia. Does anyone have experience with Lutetium and could comment?
There are local trials for lutetium in Oz, but these are randomised, patients receive either cobazitaxal of lutetium. MO wants to get me off chemo for a while as he is worried about toxicity so that counts me out of the trial for a wee while. He also won't let me have carbo-platin for soft tissue mets, again because he is worried about toxicity of this drug.
There is a private supplier of lutetium in Oz, and since I am both castrate and chemo resistant then i should be able to access this. Yes it will cost me money (approx AUD8k per shot) but I would rather hit the cancer hard while it is still down. Lets see what happens after next clinical review.
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How extensive are are yout liver and soft tissue mets?
From what I understand, LU-177 effectivity depends on PSMA expression because that's the target of the treatment. So you would need to get imaging to check that first.
Thanks Greg. My last PSMA Ga-68 scan was Dec 2017, before chemo. In summary it says:
"Current scan finding is suggestive of soft tissue metastisis involving a left mesorectal node, right hepatic node and and mesentry with only modest PMSA expression."
- Mesorectal node "mostly avid" (SUVmax 11), corresponds to 24mm x 18mm soft tissue abnormality seen on CT scan. No other avid nodal abnormalities seen.
- There are at least 5 PSMA-avid lesions of similar intesity seen in the right hepatic lobe. One liver lesion is SUVmax20.
- Numerous variably mild to moderately avid (SUVmax up to 7.5) nodules in the lower abdominal mesentry
So I have given this stuff a good nudge, but I hope that Lutetium (if I can get it) will be able to make further incursions.
Also, bone scan shows NO active osteoblastic boney metastatic disease.
The prednisone they give with Zytiga is a very low REPLACEMENT dose because Zytiga interferes with the mechanism your adrenal glands use to produce cortisol.
Good luck getting on the Lu-177-PSMA trial. Even if you're randomized to cabazitaxel, considering your really good initial response to docetaxel, there's every reason to think it will do well for you too. You can always try the Lu-177-PSMA after that.
After round 4 my PSA started to rise. Added Xtandi and by round 6, Dropping quickly again. Pushed through rounds 7,8,9 PSA settled at 0.14 +,-, 0.004. #9 hit the wall and three days later vision went nuts and I went down for 21 days. Hope you have better luck. Still progressing with spreading side effects with Xtandi 160 mg. Seeing dr's in 2 weeks after whole series of tests. Wishing use both luck.
Thanks Doug, I am feeling good after #9 but PSA has gone up another notch. Interesting to read that you added Xtani during chemo, my MO doesn't like mixing different treatments and won't start next thing till chemo is after. I would prefer a combo attack like you are on, and really get after the bastards rather than giving them a chance to draw breath. Hope you are feeling better - was #9 last chemo for you?
Yes, with #9 I sloughed my skin on my whole body, 7 knives in my belly, hands numb to above wrists, feet numb to above ankles, ,double to quad. vision, focus so bad I couldn't recognize people across the room, continuous bloody nose,running eyes, joint pain,feet on fire, toe nails all died, just plane misery. down 21 days before any real recovery.No driving--couldn't see,feel the wheel or the petals. So yes #9 ended it for me, hit the wall with taxotere, it was going to kill aPC by killing me. Still suffering with feet, hands, joints and lesser belly pain 24/7. Probably from Xtandi. May have hit me so hard because of combo treatment, together the side effects multiplied instead of added. 4 1/2 mo. off chemo and still can't work. Hoping for return to work for July and August, take most of Sept, off and quit in Oct. Kind of depends on outcome of next battery of tests.
Xtandi has alot of side effects you dont realize until your off. My father had horrible swelling and bruising and joint pain on xtandi. As for mixing treatments my dad had chemo and radiation together got horribly sick and hospitalized. The dr said he needed the power from both to help knock out the cancer so theres pluses and minuses from it. Goodluck to all you guys. Stay strong keep fighting.
Boy !! That sounds really bad. My sympathies, Doug. I never even dreamt that things could get that bad. I am truly hoping that things work out for you. All the very best.
Before going rogue against your doctor's advice, try Xtandi with lupron. I've been 6 years out. I have a Gleason 9, PSA of 31 at diagnosis, 5 month doubling time and a stage M1. I've had Xtandi added to Lupron for 3.5 years. Depending on your genetics, you could have a terrific response. Kevin
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