I am in need of treatment advice for ... - Advanced Prostate...

Advanced Prostate Cancer

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I am in need of treatment advice for my Prostate cancer

Thedawg profile image
18 Replies

Ive been in treatment at Shaw Cancer Center in Edwards, CO for metastic prostrate cancer. After a year of hormone therapy, radiation and chemo, my first PSMA scan revealed adenocarcinoma in my prostrate with seminal vesicle and perineural involvement. I have a PSA score of 0 and have had a history of low PSA scores that do not match the aggressive of the disease. I’m 63 years old and in excellent physical shape. My radiation doctor has suggested that I gather research on treatment options. My oncologist has mention I may qualify for Lutetium 177 PSMA 617 treatment, they have also recommended I look into Brachytherapy. I’ve requested appointments at Mayo, MD Anderson, U of Chicago and Loma Linda but I’m just not sure how to proceed.

I added my notes form my doctor appointments for the past year in my bio if that helps..

Thank you.

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Thedawg profile image
Thedawg
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18 Replies
Tall_Allen profile image
Tall_Allen

Did you have a biopsy that revealed small cell PCa? Blood tests for Chromogranin A are not enough. Does he have lytic bone metastases? There are also types of PCa that don't produce PSA and are not neuroendocrine. There are also mixed types.

He should have a biopsy of a bone met with histology and IHC with these stains, if possible:

AR (androgen receptor), PSA, PSMA, MSH2, MSH6, STEAP1, PD-L1, chromogranin A (CGA), neuron-specific enolase (NSE), synaptophysin (SYP),  DLL-3, CD56, Somatostatin (SST)

In your profile, you mention Lu-177 a few times, but you don't specify which Lu-177 radiophamaceutical - Lutathera (for small cell) or Pluvicto (for PSMA-avid PCa)? You also mention Gallium but don't say which one (both are possible)?

Thedawg profile image
Thedawg in reply toTall_Allen

Thank you for responding so quickly.

I don’t know if the biopsy revealed PCa…they’ve called it small cell a few times primarily because of the neuroendicrine suspicion.

My chromogranin was so high and cribiform was noted, so they referred to my cancer as neuroendicrine prostrate cancer, but more recently are labeling it as high risk prostrate cancer because the chromgranin did not decrease with chemo.

I had a spot on my pelvis bone but I do not believe that it was biopsied.

My radiologist is suggesting PSMA Lutetium 177 if I qualify.

I don’t know what type of Gallium I had. Cannot locate it in my records

Tall_Allen profile image
Tall_Allen in reply toThedawg

That is not sufficient for diagnosing neuroendocrine. Ask your oncologist for those IHC tests.

Tall_Allen profile image
Tall_Allen in reply toTall_Allen

Pluvicto (177 Lu-PSMA-617) is only for use for PSMA-avid metastases. It is toxic if there are not multiple mets that are PSMA-avid. Similarly, Lutathera (177 Lu-DOTATATE) is only if your metastases significantly express somatostatin.

tango65 profile image
tango65

If I were in your situation I will consult with Dr. Beltran at the Dana Farber in Boston. She is one of the Drs. working in neuroendocrine cancer.

dana-farber.org/find-a-doct...

Your profile is confusing to me, particularly because the doctors are recommending PSMA PET/CTs and Lu 177 PSMA treatment when they made the diagnosis of small cell neuro endocrine cancer.

M y understanding is that small cell neuro endocrine cancers express very little PSMA. The PSMA PET/CTs may not detect this type of cancer and Lu 177 PSMA treatment will not be very effective.

The main element to diagnose NE cancer is histology associated with the study of NE markers and it seems they have only study chromogranin A .

They had the biopsies from your prostate and they could do all the histological , IHC and genetic studies needed to classify the tumor precisely.

If you had this type of tumor and you have exhausted treatments, Dr. Beltran could guide you to clinical trials to continuing treating the cancer.

larry_dammit profile image
larry_dammit

after chemo (taxotere) my oncologists put me on xtandi. That was 6 years ago. Stage 4 with Mets in spine , hips , chest. So far psa is staying at 0.05 undetectable Never give up my fellow warrior 🙏🙏🙏

Survivor1965 profile image
Survivor1965 in reply tolarry_dammit

same

spencoid2 profile image
spencoid2 in reply tolarry_dammit

i just did my 4th doxy 4 days ago and it is the worst so far. does it keep getting worse and worse? i can barely walk but do not have any of the horrible symptoms that you need to call your doctor about.

larry_dammit profile image
larry_dammit in reply tospencoid2

I was kind of lucky. I really didn’t have to much trouble but my daughter is a nurse and had me on anti nausea meds from the start and wife had me on Tylenol and ibuprofen for the muscle issues. Doctor also had me on MS Contin and Dilaudid for pain. Slept a lot lots of water 🤪

spencoid2 profile image
spencoid2 in reply tolarry_dammit

I just did a home test and i have covid so maybe the chemo has not gotten worse. Not sure that we can get to town to get drugs being of being snowed in. Anyone have a helicopter :)

larry_dammit profile image
larry_dammit in reply tospencoid2

oh no, man when I was going thru chemo the doctors really stressed that they wanted me away from sick people of any kind,. Call your oncologist now. With your system down this is a real emergency. Be careful warrior 🙏🙏🙏🙏

spencoid2 profile image
spencoid2 in reply tolarry_dammit

got paxlovid. boy that stuff works fast. those pills are pretty big and i might have heard construction noises pretty soon after eating paxlovid.I thought I saw a cellular antenna counted on my butt. You gotta give it to them.

Zennavigator profile image
Zennavigator

I was diagnosed with prostate cancer in September 2022 with 12 of 13 biopsy sites positive, one with the highest gleason score of 9. My PSA had been rising for a number of years. I had previously refused the biopsy. Prior to diagnosis a friend of mine told me about Panacur C (fendbendezole) and its promise in the treatment of numerous forms of cancer. I began taking initially 222mg capsules of fendbendezole I purchased online (5 per day) until I had taken the full bottle (90 caps) then switched to 1 gm of powder per day with no breaks for 4 weeks then switched to 4 days on and 3 days off to give my liver a rest. Subsequent MRI, bone scan and pelvic CT scan showed no metastasis. I also had what I believe was a dime sized (undiagnosed) melanoma on the left side of my scalp. Over the period of my self treatment I saw this area diminish in size with some periodic flaking until all that I have now is a small reddish area that continues to get smaller.

Anecdotally, this person had breast cancer and a lumpectomy with radiation but used fenbedezole secretly and is now cancer free. She also told me of a man I had went to high school with who was already in hospice for thyroid cancer who was completely cured with this drug. A third with prostate cancer, etc. Please read online about the Joe Tippen protocol. He was cured of stage 4 lung cancer using fenbendezole, CBD oil and several other supplements. Good luck with this.

billd50 profile image
billd50 in reply toZennavigator

If you live in Colorado, there are 2 Prostate Support groups who may be able to help you sort through some of the issues. This site is also an excellent source of info and ideas.

One support group is in Louisville CO and the other is in Fort Collins. I run the Fort Collins

group, Rick Powers runs the Louisville group. Look at the ZERO Cancer website for other

support groups in the US.

DenDoc profile image
DenDoc

You live in Colorado. Why not go to the University of Colorado Urologic Cancer Center for the second opinion. They are an academic center with excellent staff and quite capable of reviewing your unique situation.

You are 100 miles from a good second opinion.

Tall Allen is a terrific resource on this page.

Thedawg profile image
Thedawg

thanks for the good feedback. I will be posting a medical summary from my doctors today or tomorrow that should shed more light on my situation.

lewicki profile image
lewicki

I went to the University of Heidelberg for LU-177 and AC-225. I only do Dutasteride and Flomax now for 26 months. Last PSA was <0.1. Let me know if you want contact information.

austinsurvivor profile image
austinsurvivor

Look into Rocky Mtn Cancer Center Lu177 trials here in Denver....My MO is Dr Patrick Eulitt at RMCC.

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