An Update for the Community

[StePeteMN]

Good Sunday evening (or Monday morning) to all of you. I'd like to provide an update on my situation and that of my father, while we're at it. First, my dad. He's 89 and a half years old and been on this PC project since his early sixties. He started LU177 in September, after Xtandi stopped working, with a PSA of around 16. After one infusion, his PSA was 2.8 and after two infusions, it was .8 so I think we can say this is going very well for him.

As for me, I spent much of 2022 getting Cabazitaxel and Carboplatin--nine cycles! It was an up and down journey with marginal PET scan results after three, and then still marginal after six cycles. But after nine, things looked a lot better on the Choline PET (I generally get the Choline PET as they show more uptake on me than the more famous PSMA PET scans). I still have a tiny amount of PSA--I'm told by MO that PSA isn't a super informative indicator for me--my PSA was very low at the start of chemo with a messy-looking PET scan, and now, with a basically clear PET scan PSA is just a little lower than very low.

The surprise (not a good surprise) on the PET scan was that a compression fracture that had been developing over the last while had deteriorated to the point where broken bone fragments were protruding into my spinal column. Before this bone was radiated a couple of years ago, they warned me that 10% of radiation patients (radiation to this area) develop a "broken" vertebrae. No regrets. The tumor had to go. But it was now necessary to fix this collateral damage once and for all. The only way to decompress and stabilize this side of the spine is to enter through and past the vital organs. Therefore, I had a very involved and complicated surgery early last month, and am feeling more normal as the weeks progress, now. How did this happen? Life. Maybe a couple of MTB and XC ski wipeouts made a small contribution, but more likely than not, the fracture is the result of over-doing it shoveling snow one very cold day after my old snow blower failed to start (because of the cold--I think it was about 0F or -17C which, I know, an important temp for a snow blower to start!). The lesson learned is someone like me should be more careful, and buy a new snow blower sooner rather than later. I'll be more careful in the future.

[Seasid]

Next time pay someone to do the job for you and you stay in a warm room reading our posts here.

I only vacuum my room when I pressed hard by the owner of the house that he will kick me out if I stay so dirty.

I am also not washing my clothes very often saving money and energy for the future generations.

I talked to a nice lady who honestly said to me that our society is spending so much money and recourses to extend these terminal cancer patients their lives for couple of days and neglecting the global warming and that will result that our civilization will be wiped out.

I can understand her. She said that she is planning to buy a Tesla 3 car to personally contribute to the climate change effort of our society. She feels very bad and she feels very down and depressed that she is not contributing more to the effort to save our planet.

[RJ-MN]

I appreciate this update - so glad for your dad's positive experience with Lu177. Your own journey is different, and you have been addressing your own PCa with your own body's needs. And, like you say, "life" happens. We do all this, struggle with all this, accept all this in order to live. Sorry for your extensive surgery - glad for your recovery and tone. Health to you!

[KocoPr]

Very glad to hear of the positive news on you're Dad, what a warrior having had this beast for what 20+ years!

I hope your struggles improve, you’ve must have gone through hell with all these treatments.

Since you and your dad have it have you both had your genetics done on germline and or somatic?

It is interesting that you have a non PSA expression and your dad has the PSA expression.

[StePeteMN]

Yes, that is interesting. Also interesting that I have low PSMA expression while his PSMA scans look like a Christmas Tree. We both regularly get a Guardant 65.

[KocoPr]

Did you find any mutations in your gauardant65 and are they the same between you both?

[StePeteMN]

So far nothing comes up for either of us.