Intros and concerns

[Nagoh01]

Hey y'all, I have been stalking for a few weeks but feel ready to share my story, which is new compared to many here but pretty complicated! Put this in my bio but figured I'd post it here for ease. Any ideas/insights appreciated! I have great confidence in my team but am constantly looking for answers and today maybe some encouragement!

(55, M) no symptoms until back and neck pains began Oct/24 during a bunch of heavy plane travel and after COVID diagnosis in late September. Self-treated with Advil until Dec/24 with a trip to the ER after intensifying and spreading pain to the hip and chest. X-ray shows nothing, then sent home with back pain diagnosis with an order to followup with primary, who ordered blood tests and a second x-ray (insurance denied CT).

Meanwhile, pain remains/intensifies so wife pushes me to a second (better) ER (Jan25) where CT scan shows multiple mets on the ribcage and a lesion between the rib cage and lung. End up in hospital for week. Bloodwork shows PSA 1640. Correct, 1640. Immediately begin Bicalutamide (50mg) and get first biopsy:

Bone lesion, right iliac, CT guided core biopsy:

- Bone with fibrosis and rare crushed pancytokeratin positive cells of undetermined significance; see comment.

There are rare crushed cells, which are positive for AE1/AE3 and with no definitive nuclear staining for NKX3.1. All controls show appropriate reactivity. These cells are of undetermined significance. A malignancy is not entirely excluded.

First doc orders abiraterone (4X250mg), prednisone (5mg) daily plus first lupin injection (Feb/2) and immediate Docetoxal

2nd opinion (major cancer research institute) suggests PSA score could be much higher. He was correct 3019. Corroborates first doc

February pet scan language:

Extensive PSMA tracer avid osseous metastases; including a rib metastasis with an extraosseous component. Nodular PSMA tracer avid prostate lesion.

3rd opinion from another major cancer research institute concurs with order of first doc but suggests holding off on Docetoxal initially to establish baseline with other treatments

PSA has dropped dramatically but slowed as of today (11.06)

2nd Biopsy Diagnosis to mass in rib cage:

1. Rib, Left; Biopsy:

- Metastatic carcinoma consistent with prostatic origin, involving bone and surrounding soft tissue, see note Note: By immunohistochemistry, the tumor is positive for NKX3.1 and PSA supporting the above diagnosis. The tumor has small cell/high-grade neuroendocrine morphology, however synaptophysin shows only patchy expression, and chromogranin is negative.

Docetoxal was to have started today (4/15) but moderate allergic reaction kept me from going forward. To try again next month

[JSHT]

I’m sorry to hear about your recent diagnosis. I hope you’re doing okay. I don’t have much to offer in terms of advice as I’m still just learning about it all in hopes of being able to support my father better, but I wanted to reach out and let you know that I’ve read your post. You’re in my thoughts and prayers as you navigate your next steps.

[Nagoh01 in reply to JSHT]

Thank you!

[Sailing-Todd]

I hope this insight helps. My husband was diagnosed in March 2022 aged 62. PSA 1120, Gleason 10 and 20% neuroendocrine cells. Boney metastases from skull to shins.

He was too poorly for chemo so has received only Prostap and Erleada since, (along with early radiotherapy to high load prostate and fractured neck of femur).

Three years later he is busy doing all the things he wants to do (aided by an afternoon nap!), and his PSA has remained <0.1 for the last eighteen months.

I wish you all the very best. Go and seek out all the things you enjoy and make a positive effort to concentrate on those. I believe my husband’s decision to refuse to dwell on his illness and to keep himself busy with what he loves has been his best medicine of all.

[Nagoh01 in reply to Sailing-Todd]

Thank you! Your note got me to the gym today.

[lcfcpolo]

Crickey. To be honest that is unusual and I've read many stories over the past 4 plus years. I started with a PSA of 1311 in May 2020 so I hope this gives you hope. Your doctor's have a really good picture now of how your prostate cancer looks. The small cell element is unusual from the get go. I'm in the UK but from what others have written, Dana-Farber hospital are experts in neuroendocrine pc, maybe a Dr. Khan but I'm sure others living your side of the pond can advise. Just to wish you good luck. Exercise helps.

[Nagoh01 in reply to lcfcpolo]

Thank you! Another vote for the gym.

[Woodstock82]

How are you doing with control of the neck/chest/back/hip pain? I hope that's better now.

If you haven't already, start and maintain a regular strength-building exercise program. It is the best way to counter the most common side effects of the Lupron and abiraterone.

How is your bone density? Prostate cancer and ADT increases your risk of osteopenia and osteoporosis.

They also increase your risk of diabetes and heart disease. Monitor regularly.

[Nagoh01 in reply to Woodstock82]

Thankfully the pain subsided quickly after the first Lupron injection and a bad weekend of testosterone flares. There have been occasional creaks (pain level 4-6) where I popped a Celebrex and even an Oxycodone (5 mg) but it's few and far between. I have met with a rehabilitation doctor that has prescribed a basic excercise program but I'm finding it boring to do at home. Thinking maybe a yoga/pilates program for old fat guys/beginners? Not sure about my bone density. Pet Scan described to me as distant but low density—"a light sprinkle throughout." There are multiple mets and lesions on pelvis. Seems like a effects of ADT were overshadowed by the immediacy of my PCa condition. Other blood markers remarkably normal.

[SeosamhM]

Here's my opinion/perspective on your situation (currently 8.7 years post-diagnosis at 49 y.o. with high bone tumor burden and low-PSA expression PCa) -

Great news on the dive from PSA in the thousands to 11ish. Everybody's cancer PSA expression is different and there is no direct correlation between PSA and tumor burden (e.g., on diagnosis mine was 139 but I still had bone mets everywhere). So I am very encouraged by your response in that area!

I'm sorry about the pain - as if PCa isn't hard enough. My pain was initially specifically linked to bone tumors (neck, spine, pelvis), but I was more systemically miserable through the start of ADT and then focused radiation and Docetaxel. Eventually, though, this pain got better, although I did notice the systemic pain went up with abiraterone.

As everyone here is suggesting, though, exercise is crucial. You should look into a simply DEX bone density scan to determine if you have osteoarthritis or osteopenia.

My one question is - why aren't your doctors considering Pluvicto since your cancer is so PSMA-avid? I'm willing to contradict the obvious great news of your 11 PSA and say that your cancer could be construed to be castrate-resistant so that you would qualify for Pluvicto (PSMA-Lu177). While I was in the minority in terms of how I reacted to it (kinda miserable), Pluvicto is still a better option when compared to untargeted taxane chemos, although I think some men have done both concurrently.

Also ask about PSMA-alpha therapy trials. You may be a good candidate.

Good luck! -Joe M.

[Nagoh01 in reply to SeosamhM]

Thank you for your response! The pain has been kept at bay for awhile now with some some occasional pops of Tynlenol/Celebrex/oxycodone. I have bone density scan on my wish list at for next visit! re: Pluvicto—my guess is that the triplet diagnosis was started almost as an emergency response. Everything went backward really—treatment, then scans, then biopsies! I will certainly ask about Pluvicto and trial possibilities. My onc is already impressed by my prostate knowledge thanks to this site. She can tell it's more than me paging Dr. Google for sure.

[SeosamhM in reply to Nagoh01]

Yes, this place certainly brings a fellow's PCa IQ up quickly!

Triplet is pretty much standard-of-care (SOC) nowadays, youngster (I am, after all, 57!) 😉 Since you are young for this, your stratospheric PSA was diagnostic enough to start SOC therapy ASAP. It is nice that they took a bone biopsy - that can possibly help guide future treatments.

In the meantime, though, Pluvicto for the (possible) win, I say. After the FDA initially cleared it for use in March 2022, my doctors at Ohio State University James were quick to get me on as soon as I was eligible in October 2022. Although initially a mixed bag, it was great and I got a full 20 months of progression-free life after treatment ended in June 2023, so you could say I actually got 2+ years if you include treatment time.

Anyway, just last month the FDA has expanded Pluvicto's use - see:

urologytimes.com/view/fda-a...

Again, I don't know if you are officially considered "castrate resistant," but an argument could be had!

[vintage42]

"... First doc orders abiraterone (4X250mg), prednisone (5mg) daily plus first lupin injection (Feb/2) and immediate Docetoxal... Docetoxal was to have started today (4/15) but moderate allergic reaction kept me from going forward. To try again next month."

Docetaxel should be started within a few weeks of hormone therapy, as it works on live cancer cells. If started past that window , it will not be effective against cancer cells that have been numbed into impervious senescance by the hormone therapy.

[Nagoh01 in reply to vintage42]

Thank you for responding! Doc seems comfortable that 5/6 will still be in that window. I will confirm though.

[avalulu]

Try FENBEN

[Professorgary]

psa of 5664 and extensive pain. Actually thought it was stenosis caused by a history of degerative disc disease. Mets in lungs and nodes as well as spine, ribs,left femur and pelvis. 30 days of casodex and started Lupron after 15 days. Psa 278 in 3 weeks. Psa came down to 6 and started climbing so abiraterone was added when psa hit 20. Psa came down to 1 over the next 6 months and bounced around and prednisone was dropped and dexamethasone added 6 weeks ago when psa was 9.89 and dropped to 7.06 after 3.5 weeks. Alp also dropped. Tomorrow I’ll mow the lawn with a walk behind and Friday I’ll go fishing. I’m telling all of this to let you know you can still have a good life, however it will be different. I am approaching my third year anniversary of treatment. When I still thought my pain was caused by spinal stenosis I began taking celebrex and curcumin and pain level dropped drastically before I began treatment. I applaud you for getting several opinions. I have two oncologists and a urologist and value each of their opinions however I make the call as to treatment.God bless.

A

[Nagoh01 in reply to Professorgary]

Your words are so reassuring! But damn you now have me beat on the PSA score. Do you think your COVID experience had anything to do with that crazy surge?

[Professorgary in reply to Nagoh01]

Yes, I do. My psa went wild after covid. I had covid pretty bad. O2 went down to 88 and I battled fever for 15 days with two nights hitting 104 and requiring cold showers and ice packs on my neck.

Another thing of interest, when I got my covid shot last fall my psa was on the rise. A psa check 6 weeks later showed my psa and alp dropped. I researched the covid vaccine on pca and found the spike protien in the sars 2 vaccine kills pca cells.

[Nagoh01 in reply to Professorgary]

wow!

[Terra5796]

My dad has had stage 4 prostate cancer for at least five years. (Who knows how long he’s actually been at stage 4.) The important things I’ve learned about this disease include: 1. treatments continue to evolve and there aways seem to be other options if the cancer becomes resistant; 2. Stay active; and 3. Live your life. My dad has never let this dx define him, has traveled, bought a new house and remarried after my mom passed away. I’m sorry for your diagnosis and best wishes to you and your loved ones.

[Nagoh01 in reply to Terra5796]

Thank you for your comments. Still trying to reel this all in but keeping your dad's experience as motivation!

[j-o-h-n in reply to Terra5796]

That's why your Dad's friends and your relatives call him "Terra Firma"....

Good Luck, Good Health and Good Humor.

j-o-h-n