Pluvicto Aftereffects SMART syndrome?

[Biobro]

As I've posted here, spouse was pretty much the poster boy for Pluvicto. He had a hiccup with the supply issues, but PSA dropped significantly and his side effects during treatment were perfectly manageable, until ....

We were heading to NM via West Texas when he began complaining of bright light and headaches. Then he got suddenly much weaker. We turned around and went home. He slowly got stronger but was still plagued with light sensitivity. Last week we drove to Austin. Same complaints, light sensitivity, headache, nausea and sudden crippling weakness. Docs not useful (he's got metastatic prostate cancer what do you expect?) and spouse won't entertain hospitals. So I Google and come up with SMART syndrome aka stroke like migraine after radiation treatment. Fits all.his symptoms AND partly responds to aspirin plus a low dose of methyl prednisolone which we happened to have lying around.

So, happily Dr googling and without benefit of any medical practitioner whatsoever, we are pretty confident that he has this syndrome. He doesn't want the heavy duty treatment a hospital can offer so he's recovering slowly in darkened rooms while waiting for the start of a hail mary trial which will start in 2 weeks.

[treedown]

Thanks. I think the jury is out on Pluvicto's benefits vs its side effects and/or lack of benefits. Hope you husband does well on the hail mary trial, sounds like he is lucky to have you looking out for him.

[Biobro in reply to treedown]

Treedown. I agree. But it was the first treatment that actually lowered his PSA and left him feeling human. So would still recommend it.

[Yank66]

Interesting. Thanks for posting. Have the benefits from the Pluvicto stopped? Would you share about the upcoming Hail Mary treatment ?

[Biobro in reply to Yank66]

Yank66. Yes, PSA is rising rapidly. We knew it would, when the supply issues and the Hep E infection caused him to miss once complete cycle and PSA started rising fast. Hail Mary is an androgen receptor degrader but it hasn't actually been "released" so don't know enough to share. Once we have the info will post immediately.

[Lynsi13]

I'm sorry your husband is going through this! I'll start by saying that my dad has NOT had Pluvicto treatment. And alongside his stage four prostate cancer he also had primary central nervous system lymphoma (brain cancer) in 2021 and subsequent chemo to the brain. He's in remission now, but his vision was affected from this.

One of his lingering side effects from it a condition called occular migraines. His presents as a waterfall or kaleidoscope type vision in a portion of his vision field with some light sensitivity.

Oddly, my husband which is 40 and the picture of health gets these migraines on occasion, too. His presents as more tunnel vision and seems to be triggered by fatigue + sudden light changes.

I know I'm not answering your questions, so my apologies. I thought perhaps it would provide you another angle to research.

Best of luck to you and your husband!

[Biobro in reply to Lynsi13]

Thanks Lynsi13. I took had migraines in my youth which helped me recognize that that was what his symptoms resembled. SMART syndrome generally occurs to those who have had direct radiation to the brain, but spouse's final Pluvicto treatment felt like the whole dose had gone to his skull, so we assumed that he had mets there. And that's why I made the jump. Hopefully not brain mets, but we should know that next week.

[MateoBeach]

Good research to find a plausible explanation! Since it is a form of migraine why not see a neurologist and get a trial of an anti migraine medication. Take him a published report on SMART.

[Biobro in reply to MateoBeach]

MateoBeach, Thanks. Of course the unspoken fear is brain mets, but as far as I can see, these do not generally cause the type of vision issues that he is having. Today, oncologist revved into gear and he is to have an MRI shortly. So we'll have a decent picture soon. If it is brain mets, then he has decided no further treatment.

[j-o-h-n]

I am not a doctor or veterinarian or engineer or psychiatrist, or vegan or president but just a lonely try to be comic guy.....(handsome btw) who wrote a post a few days ago......All I said was that based upon all the shit I've read here (HU) about Pluvicto, is that, that word should be considered an 8 letter curse word. (To some members, "Them are fighting words" so as a precaution, I enrolled my wife in training as a kick boxer).......

note: If this post makes sense to anyone..... please explain it to me..............

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/21/2023 5:05 PM EST