PTEN loss, TP53 and TMPRSS2 mutations

[Shellhale]

Found out yesterday pushing for foundation testing that husband has PTEN loss, TP53, and TMPRSS2 mutation. MO says cancer is well controlled for now and talked about a clinical trial he was a part of for PTEN with a small molecular inhibitor. He says these treatments are far down the road. But I would like to hear any experience or insights.

[StayingOptimistic]

I also have PTEN loss and TMPRSS2 mutations. It was discovered at end of 2020. MO said then that they are not actionable to treat. I only found out about this last year and I was shocked because I thought I didn’t have any somatic mutations but ended up having both. I am on IADT. My Psa started to rise now. I have been on vacation for 14 months. I shoukd go back on ADT soon. What are you or your MO doing about it? Any advice from him? Thanks.

[Shellhale in reply to StayingOptimistic]

He said if his psa continues to rise that he will do a PSMA scan and another DNA sequencing. Last 3 months psa 0.27, 0.31, 0.54. There is also a clinical trial that his Oncologist is involved with for PTEN loss tumor suppressor it's a small molecular inhibitor that hasn't been approved quite yet. Also he mentioned Capivasertib to have benefit for mCRPC. Husband is still hormone sensitive. He made it sound like it would be beneficial later on down the road. It turns that my husband has had these variants since dx. The only reason we found out is because I pushed for another opinion on his original biopsy slides and asked for foundation one testing. Also it turns out that we have been blocking those pathways all along with the repurposed and off label drugs. He is doing quite well actually only has minor urinary symptoms. MO says his cancer is controlled for now but then there is that very slight PSA increase that he is going to start watching.

[StayingOptimistic in reply to Shellhale]

It’s great he got his Psa down to this level by being on mono therapy alone

[Shellhale in reply to StayingOptimistic]

His PSA was actually rising when he was on Monotherapy Xtandi. PSA nadir at that time was 1.5 and within 3 months went to 3.1. That's when we tried the orgovyx experiment. Then moved to radiation and switched to nubeqa. Then PSA got to the lowest ever 0.27.

[StayingOptimistic in reply to Shellhale]

I am very worried for myself about these mutations though.

[Shellhale in reply to StayingOptimistic]

I was initially stressed about it. But then I felt better knowing that we have been blocking those mutations with the off label drug protocol for over a year now without knowing it. I believe this is why he is doing so well. Also, know that there is a clinical trial that just finished involving these variants. Our MO is involved with it getting final approval. We are in Colorado and at The University Of Colorado NCI designated Cancer Center. I can send you his Oncologist info if you would like.

[StayingOptimistic in reply to Shellhale]

Thank you very very much. Please send me the info and please if you have the clinical trial information also if you have it. I would really appreciate it.

[Shellhale in reply to StayingOptimistic]

I sent you a message on chat

[Milo786 in reply to Shellhale]

Which off label repurposed drugs have you been using.

[Shellhale in reply to Milo786]

Metformin, celecoxib, Pitavastatin, intraconzole, Ivermectin, mebendazole, low dose naltrexone, and cialis. Some of these are rotated in and out, also 4 days on 3 days off.. Numerous supplements also that have all been researched and approved by integrative doctors.

[Shellhale in reply to StayingOptimistic]

Also forgot to mention he is not on ADT. He has only tried it once for 3 weeks and stopped it. He did not tolerate it and won't go back on it.