Disgusted with Kaiser & FDA

[MamawV]

At stage IV diagnosis 7/21 hubby was told that Surgery or Chemo was not an option because of widespread mets from neck to hips. PSA went to 42 in June ‘22 and now its 145. Dr is now suggesting Chemo so he qualifies for a new promising treatment of Pluvicto. Our concern is Chemo will just destroy his good cells and make him weaker. We should be able to refuse the chemo and go straight to the recently approved treatment that only targets the cancer cells. So frustrating dealing with unnecessary protocols from Kaiser in So California.

[Papillon2]

Try that question in the "Advanced Prostate Cancer " group. Good Luck.

[MamawV in reply to Papillon2]

Oops thought that’s where I posted

[CAMPSOUPS]

To my foggy recollection Insurance no matter the carrier (Kaiser, Blue Cross, etc.) will not cover the cost of Pluvitco unless prior chemo treatment has been instituted.This is the way things work. The trial that finalized the FDA approval of Pluvitco was made up of men who had prior chemo so the FDA approval follows that to a letter. Unfortunate.

Chemo can work wonders. You said your husband is already weak? I wonder if he has conditions and age factor that first caused the Dr. to pass on chemo. Now Dr. is trying to help you get Pluvitco by offering chemo. Probably don't have to do all 6 chemo infusions to qualify for Pluvitco. After about 2 infusions might be able to qualify for Pluvitco.

[Papillon2 in reply to CAMPSOUPS]

Outstanding!

[MamawV in reply to CAMPSOUPS]

Yes she said even after one treatment if he couldn’t handle the Chemo she could try for the Pluvicto. He just feels like a guinea pig for big Pharma and they don’t have his best health interest in mind😔

[CAMPSOUPS in reply to MamawV]

Try to have faith in the medical team and his Dr.Pretty much a certainty they are not conspiring or working against you to my knowledge.

Those thoughts wont serve anyone well when the seriousness of PC is at stake.

I myself would be happy to be in the Kaiser system.

[Sunlight12]

Hi MamawV,

A couple things: there has been some rigamarole going on over at Advanced Prostate Cancer, so if you have questions, at the moment, you might try posting both places (this is Fight Prostate Cancer) as the body of knowledge has been split up a a bit between the 2 sites.

Second, my Dad had liver disease concurrent with his cancer and he was able to handle the 1st-3rd chemo treatments quite well. They did get tougher on his system as he went, but as it sounds like your husband may only need to do one or two to get where he needs to go, I wanted to give you some hope that his body may do alright with them. My Dad had Docetaxel.

Thirdly, I don't know if you are working strictly on the allopathic side of things, or including natural approaches as well. If the latter, there are supplements that can aid the body in handling the chemo. My Dad's naturopath used oral humic minerals. I'm sure there are other supplement-based approaches as well, but the best guys to answer that for you would be Patrick (pjoshea) or Nalakrats. My suggestion would be seeing if you could message either of them privately...or maybe one of the posters on FPC has a way to get in touch with them.

In solidarity,

Sunlight

[NPfisherman]

Welcome to the forum,

I am not sure why Kaiser started him on Eligard and delayed on Xtandi since the recommendation has been to start people on ADT plus an ARPI drug (Androgen Receptor Pathway Inhibitor) from the beginning....STAMPEDE proved that with abiraterone... and the APCCC 2022 meeting further enforced that... STAMPEDE also showed using docetaxel early in high volume disease should be the treatment plan... They missed the boat twice...

He is now castrate resistant, so getting to Pluvicto after one session of docetaxel sounds reasonable. They make caps, gloves, and footies/stockings that can be filled with ice to reduce the risk of peripheral neuropathy--tingling/burning/numbness in the hands and feet, as well as hair loss.... Nalakrats wrote a post on peripheral neuropathy on APC. A great post... I would use those items, and see how he does with docetaxel ,and he may be able to handle more than one dose of docetaxel before using Pluvicto. His PSA may go up post docetaxel due to cancer cells being killed, so a f/u scan is a better indicator of whether the chemo is working or not...

You are in a tough spot.... Best of luck....

Don Pescado

[NPfisherman]

One last thought, getting germline(inherited)and somatic(tumor)DNA testing may reveal actionable mutations that may be susceptible to targeted treatment/ precision medicine. I would insist on this with Kaiser, if he has not had it yet.

Again....good luck...

Don P

[AlvinSD in reply to NPfisherman]

Agree about insisting on that. Kaiser Urology refused to order the somatic (tumor) molecular studies saying it’s not “standard of care”. This is despite me having a Gleason 9. (I was very surprised as this is in the NCCN guidelines and seemed really clear to me.)

Fortunately, my Kaiser Oncologist was fully on board with ordering both the hereditary cancer and tumor molecular studies.

MamawV Kaiser sends out the cancer genetic testing. Your oncologist can ask for the biopsy sample to be sent out for the Strata NGS testing. They can also order the Hereditary Cancer Screening which is done off of blood and can be collected with any routine labs you are getting at any lab draw location.

[NPfisherman]

Final thought, you might ask Kaiser to give him Provenge AFTER getting Pluvicto, with the idea of an immune system boost to attack the cells damaged by Pluvicto and that might clear out a lot of his tumor burden.

Fish