PSA low and Cancer Spreading

[Scoobydoocrew]

My Dad diagnosed September 11th 2023. PSA was highest at 3.71. He had 6 doses Doxetaxel that were completed in January of 2024. Currently taking Zytiga daily and lupron infections. PSA still 0.01.

In June of this year the pain started really bothering him. Hard to walk. MRIs to both hips showed bone cancer progression. We met with another MO and said he qualified for Pluvicto, that was almost a month ago. Finally after waiting and waiting the insurance denied it. I was so hopeful for this treatment and the fact it took so long for them to deny it is heartbreaking.

Should we keep pushing for Pluvicto? Or is their anything else someone may have had success with given my dad's unique situation. Low PSA and cancer still spreading?

Thank you ❤️

[NanoMRI]

Your dad is young - keep pushing!!! (not that older men like me at 67 should not push hard - I am right now based on recent PSMA imaging and liquid blood biopsy finding.

Based on my experiences look beyond PSA. Prostate cancer does change and can produce lesser amounts of PSA or stop producing PSA; I seem to be experiencing the former. When this happens serum PSA is a less reliable marker. I am finding liquid blood biopsy testing very useful in monitoring progression. My current test has identified a mutated biomarker - I have learned circulating tumor DNA can rise before PSA increases.

As I look to possible future/upcoming treatment(s) IMO there is no clear answer and again IMO we have to choose our treatment path in sense of pick our poison

[Scoobydoocrew in reply to NanoMRI]

Thank you for the information. We will talk to his MO about the liquid blood biopsy testing.

You both keep on pushing!! And I agree, picking the poison. Best of luck to you.

[GP24]

"PSA low and Cancer Spreading" This seems to be neuroendocrine PCa. Ask your doctors to check for that variant of PCa.

[Scoobydoocrew in reply to GP24]

Thank you. He did just have a biopsy of the left posterior ilium lytic lesion last week.

Final Diagnosis

A. Bone, Left posteror ilium: Metastatic carcinoma, consistent with prostate origin.

Immunohistochemical stains for NKX3.1 is positive in the tumor cells. PSA is negative. These findings support the above diagnosis.

I am asking his MO if that finding means it's not neuroendocrine? Thank you for your response.

[GP24 in reply to Scoobydoocrew]

This analysis is usually longer. If it does not mention neuroendocrine PCa yes or no, the MO should ask the pathologist who analysed the biopsy cores if he tested for neuroendocrine PCa.

[Scoobydoocrew in reply to GP24]

Okay thank you.

[Tall_Allen]

If his PSMA PET/CT showed PSMA-avidity, they have no reason to deny it. Appeal!

[Scoobydoocrew]

It definitely did. I saw the scan and it was lit up all over his body. We will figure out the appeal process. Thank you!!

[spencoid2]

bean counters are best qualified to make medical decisions

i would look for clinical trials to avoid the insurance BS but still fight the bastards

[Sunnysailor]

First, I am sorry you are facing this. My husband was diagnosed at 61.

Are you seeking care at a national cancer center? If not I suggest to get a second opinion. Yes, appeal!!! The person denying it may not even have a medical degree.

Make sure he gets genetic testing along with a liquid biopsy. For genetic they should do a germline (spit). This will test for hereditary dna mutations like the BRCA gene. Then make sure they do somatic genetic tests on the tissue samples. This will tell you if the cancer itself has mutations. These tests will help in there decisions on how to treat.

Here is the list of the national cancer centers. cancer.gov/research/infrast...

Your father is so young. He is lucky to have you advocating for him. Keep fighting! Keep asking questions. Sending you a hug.

[Scoobydoocrew in reply to Sunnysailor]

We are not at a national cancer center. Thank you for the information. I know he had some genetic testing but I am going to see exactly what they checked for. Hope your husband is doing well. Hugs! ❤️

[Hawk56]

When appealing, perhaps cite the FDA approval - aacrjournals.org/clincancer...

[Scoobydoocrew in reply to Hawk56]

Thank you.

[Skifanatic]

My PSA topped out at 3.41 before diagnosis in 2019. I went through radiation, immunotherapy, docetaxel + Carboplatin and nothing worked to push the cancer into remission. Pluvicto did, like a miracle. I’m also on Lupron ad Nubeqa, getting scans every quarter to stay on top of any remission. I’m not a doctor, but I second Tall Allen — if your PSMA Pet scan has high SUV scores (avidity) then I would appeal and fight hard to get Pluvicto. Sounds like you also need a new Mo, more aggressive and thorough. Keep fighting! Good luck

[Scoobydoocrew in reply to Skifanatic]

I'm glad to hear the pluvicto worked for you! Thank you.

[Hawk56]

perhaps use in your appeal - urotoday.com/video-lectures...

[85745]

Keep pushing for Pluvicto based on what others are saying. In the meantime go on Rumble and type in Dr. Kathleen Ruddy: The Surprising Potential Of Ivermectin Against Cancer (American Thought Leaders)

[Eagleandme]

Hi, I have a very similar journey, with a Gleason 4+5, 9 biopsy in 2017 and PSA levels at less than 2. I began having bone mets in 2019 despite radiation and Lupron, so I tried doxytaxil. That worked for a few years, slowing the progress of bone mets. A year ago, I had a lot more back and rib pain, and my PSA rose from .01 to 2.33. The oncologist added Xtandi, and that seemed to stabilize things, brining my PSA levels down to .001. However, the pattern of increased pain and leg weakness plus a slight rise in PSA to .4 may signal the need for a change again. I'm writing all of this to show that, at least for me, prostate cancer is a journey and after it metastasizes there is little hope for an outright cure. However, there is hope for slowing the progression and being more comfortable. I'm now in palliative care, which has been a great help with pain control. I'm 73 years old, so I have sympathy for your Dad. Blessings to you for being so concerned about him!! Take care.

[Scoobydoocrew in reply to Eagleandme]

Thank you for sharing your story. You take care as well!

[j-o-h-n]

Doctor(s) and treatment center where he's being treated?

Good Luck, Good Health and Good Humor.

j-o-h-n

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

He's been at Trinity Health in Ann Arbor/Chelsea Michigan. Thats where his Primary MO is, Dr. Chris Reynolds. I found BAMF Health in Grand Rapids Michigan. Dr. Mancini is the doc their who saw him and wanted to try the Pluvicto. Dr. Mancini wrote an appeal form yesterday and submitted to insurance company.

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

About Christopher M. Reynolds, MD

Christopher M. Reynolds, MD, is board-certified in internal medicine, hematology and medical oncology. Dr. Reynolds specializes in multiple myeloma, lymphoma, leukemia and bone marrow transplants.

================================================================

Highlights Brandon R. Mancini, MD

Board-certified physician specializing in radioligand therapy for metastatic prostate and neuroendocrine cancers

Residency training in radiation oncology at Yale-New Haven Hospital/Yale School of Medicine

Specialty training at the Nuclear Medicine and Radiomolecular Theranostics Clinic, ENETS Center of Excellence, Zentralklinik, Bad Berka, Germany

Passionate about providing the most optimal, personalized, and state-of-the-art care possible to patients living with cancer

This is an incredibly exciting time in medicine with the emergence of advancing technologies and therapeutics, which provide treatment opportunities for patients that both extend the quantity of life while sustaining quality of life. It is an honor and privilege to be at the forefront of cancer care, helping to bring hope to as many patients and families as possible.

— Brandon R. Mancini, MD, MBA, FACRO

Experience

Brandon R. Mancini, MD, MBA, FACRO, serves as medical director at BAMF Health in Grand Rapids, Michigan in the emerging field of theragnostic. His primary clinical focus is on the treatment of people with metastatic prostate and neuroendocrine cancers.

Dr. Mancini has also worked as clinical assistant professor at Western Michigan University School of Medicine and sits on multiple committees of the American College of Radiation Oncology (ACRO). From 2016 to 2022, he practiced radiation oncology as well. He has contributed to and published several abstracts, book chapters, and manuscripts in prestigious national and international journals.

Education

Brandon R. Mancini, MD, MBA, FACRO, received his bachelor’s degree from the University of Michigan. Afterward, he went on to earn his medical degree from Wayne State University School of Medicine.

Dr. Mancini then completed an internal medicine internship and residency in therapeutic radiology (radiation oncology) at Yale New Haven Hospital/Yale School of Medicine in New Haven, Connecticut. During the final year of his residency, he served as chief resident.

He also received his Master of Business Administration from Yale School of Management and his Fellow of the American College of Radiation Oncology (FACRO) from the American College of Radiation Oncology.

Good Luck. Good Health and Good Humor.

j-o-h-n

[God_Loves_Me]

I know insurance is not easy to deal. You have many great advice already here. In case if you get tough time from insurance, I would advice enroll in clinical trials of pluvicto. Many clinical trials are still recruiting for pluvicto treament

clinicaltrials.gov/study/NC...

clinicaltrials.gov/study/NC...