looking for next steps for my young husband

[shaunaliz15]

Out of desperation I am writing this -we are looking for nothing short of a miracle. My husband was diagnosed in 2021 at age 45 with Stage 4 Prostate Cancer. We have 3 small children ages 7,3 and 2 and we need something to give my husband time with his family. Sharing our journey in hopes that it can be of help for others in some way, and potentially give us some options too.

Journey:

Oct 21'- Diagnosed after minor symptoms (trouble eliminating completely at night). 124 PSA 4+3=7 Gleason. TP53 . Began ADT immediately Lupron

Jan 23'- + Abiraterone and started Chemo -6 rounds of docetaxel (PSA 0 .15). Neutropenia required Neulasta injection.

Jun-Jul 22'- space oar procedure (necessary as Brad has Ulcerative Colitis)and 26 rounds of radiation to the prostate & pelvic area.

Aug 22'- PSA is undetectable

Feb 23'- PSA is still undetectable, but scans show signs of progression in clavicle & spine.

March 23'- SBRT on bone spots /biopsied clavicle (no cancer found, but very small area)

JUN -JUL 23'- SBRT treated spots now clear, but new suspicious area on neck (lymph nodes), biopsy taken (regular prostate cancer) and other areas as well (bone).

AUG-NOV 23'- 3 rounds of pluvicto. Followed by scans that showed growth in liver & lungs among other areas of progression

DEC 23'- Liver Biopsy (regular PC), and SBRT on liver spot . Started Chemotherapy Cabazitaxel & Carboplatin in late Dec.

JAN 24'- Port placement (after 2nd infusion) see additional signs of progression after chemo, but decide to wait 2 more rounds to see if he's a late responder.

Feb -Mar'24 Signs of additional liver spot, liver ablation.

Apr 24'- last chemo March 21. Scans show progression in Liver, Lungs, Chest, Soft Tissue & Bone. Begin search for Trials.

[GP24]

A clinical trial he could take part in is the Cypides trial:

orion.fi/en/newsroom/all-ne...

clinicaltrials.gov/study/NC...

[shaunaliz15 in reply to GP24]

will check this out, thank you

[GP24 in reply to shaunaliz15]

The nearest site for you is Baltimore. However, you may only have to get there once for an initial checkup and then be treated with the drugs by your local MO.

[shaunaliz15]

we are located near Charlotte, NC but willing to travel. Time is of the essence though.

[shaunaliz15]

only Tp53. One thing to note is his Ulcerative Colitis which tends to be a big issue with immunotherapies /biospecifics. I will take a look at the above- thank you!

Right now he is looking at Oric-944 because we can (hopefully) get him on that one quickly

[Tall_Allen]

Maybe the non-PSMA BiTE trials:

clinicaltrials.gov/study/NC...

clinicaltrials.gov/study/NC...

clinicaltrials.gov/study/NC...

clinicaltrials.gov/study/NC...

classic.clinicaltrials.gov/...

[shaunaliz15 in reply to Tall_Allen]

thank you, I will take a look at these!

[God_Loves_Me]

Already Participate in ARX517 and I think that's good options as well :

clinicaltrials.gov/study/NC...

Here are some other Ideas

I think After chemo nubeqa or xtandi works really good. You can also try . ( Sorry If you already mentions then I missed it )

Have you study provenge therapy ?

there is old school drug "Ketoconzole" for prostate cancer, I met one patient recently and he had good results from it. Please talk doctor and understand better.

Keytruda also works for prostate cancer.

Have you study "xofigo" that also good target therapy for bones

[shaunaliz15 in reply to God_Loves_Me]

will absolutely look into these, thank you so much!

[Seasid in reply to God_Loves_Me]

He has liver metastasis. Xofigo is not prescribed with liver metastasis as far as I know. And his liver metastasis is the biggest concern. I don't believe that Lutetium or Actinium could be useful for liver metastasis. Check with his doctor.

[God_Loves_Me in reply to Seasid]

Yes agree. Provenge has better results for liver mets

[dadzone43]

I hope that you find the miracle.

[pakb]

Hoping one of the above suggestions work for him. Just sending you my support and understanding. My kids were not as young- they were 14, 16, and 18- husband was 49 at diagnosis. We did lots of video with him and the kids and he wrote letters etc- made him feel better but was heart wrenching at the time. Hugs and strength to you both🩵

[shaunaliz15 in reply to pakb]

Thank you. I'm so sorry you are in this boat too. Those ages are quite difficult (I imagine) as well just because they probably have some basis for understanding what Cancer is . Its a tough road.

[pakb in reply to shaunaliz15]

It definitely is. It was hard because they were fully aware of what was going on. They have all been in therapy since. They need it less now but it was a lifesaver!

[mangeycritter]

Suggest consult at Duke with Dr. Armstrong or Dr. George.

[shaunaliz15 in reply to mangeycritter]

Thank you, we have consulted with Armstrong and will continue to meet with him. We are leaning towards the local trial (Oric-944) but trying to set up next steps.

[rsgdmd]

Might consider looking at functional testing. It's somewhat contraversial, but they take tumor cells and grow outside the body & then expose them to different cancer drugs, often including repurposed and off-label. In my case, the drug with the highest activity (best kill rate) was mitoxantrone. This was the standard of care chemo maybe 20 years ago, before docetaxel came out. It's still in use, though not very much. Cabazataxel showed almost no activity. The company I used was Sage Medic. I recently started a trial, but know what my backup will be. Maybe talk to his doc about this. They have programs where they will do this for free. Just need fresh tissue from lymph node perhaps.

[shaunaliz15 in reply to rsgdmd]

Very interesting concept- I will ask about this, thank you!

[rsgdmd in reply to shaunaliz15]

Hopefully your doc is willing to go outside the box. There are other companies that do functional testing. They were the only ones willing to do on a bone biopsy I had and they got results. They were really nice to work with.

[Nfler in reply to rsgdmd]

That is wonderful news and I agree, we need to think outside the box n go with the most effective on site treatments. Love that you were willing to do it…

[Nfler in reply to shaunaliz15]

I also have the tp53, seems to b really common and I agree with rsgdmd by going outside the box as all the soc doesn’t seem to be eliminating your husbands pca. I personally take ivermectin n follow the Joe Tippens protocol n am having pretty good results thus far. I don’t want to steer you the wrong way but def something to look into at this point. I really love the functional testing approach as I wasn’t aware of it but sounds very encouraging especially in the resistant adv stages. Good luck as this can be overwhelming i’m sure but keep praying n the answers will come to you… God bless you n your family…😇😇💝

[j-o-h-n]

Remember, God is on your side........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Maxone73]

Hi again!

Keep an eye on this as well: classic.clinicaltrials.gov/...

The first in human had good results also on prostate cancers with TP53 mutation, this new study does not mention prostate but advanced solid tumors.

here is the original research article: mdanderson.org/newsroom/md-...

[groundhogy]

Tell every young man you meet to ask for a PSA whenever they get their yearly checkup and blood panel. PSA is a cheap test. Tell them to plot the PSA number on a graph. Over the years they will get to know their healthy normal range. The moment it pops, well, you know what to do.

This should be standard treatment for all men. PCa is the no. 1 killer or almost. Its criminal that they don’t do this. But then, theres so much criminal going on now, who even notices.