I discovered I had prostate cancer after I was denied a change to my life insurance policy! I went to a urologist whose biopsy results confirmed it was aggressive and high risk (Gleason 9). A medical oncologist ordered MRI's which showed cancer throughout my hips, pelvis, and spine (Stage IV). I went for a second opinion, and that medical oncologist asked if he could take a sample of bone from my T11 to confirm that it was metastatic prostate cancer and not some additional cancer. The culture grown from that sample confirmed there would be no cure, and no remission for me. They suggested I live with my cancer as a chronic condition where they would treat my symptoms to keep me comfortable (palliative care) and try to extend my life as long as possible to enjoy my remaining time with loved ones. I started Androgen Deprivation Therapy, taking Xgeva to strengthen my bones which were being weakened by such low testosterone. I was on ADT for 2 years before it failed. I had six successful monthly treatments with Xofigo (Radium 223 dichloride). Realizing I was having jaw pain, I began waiving my injections of Xgeva. I was soon diagnosed with a rare disease called MRONJ where the inside part of my jaw rotted out from using Xgeva! Amazingly, I don't feel pain from that anymore! I've been taking Zytiga for over a year and expect that treatment to fail soon. They tell me it will be clinical trials next or last ditch chemotherapy with Taxotere (Docetaxel) for 18 months, and then into hospice.
COVID-19 forced CTCA to ask me to seek oncology services from a local source since interstate travel was going to be difficult. My new oncologist in West Hills, CA has been continuing me on Zytiga, which must be showing signs of failing since the doctor suggested he might put me on Xtandi. I suffered a slip and fall accident in my own home which crushed my L5-S1. A microdiskectomy did little to curb my pain. I'm on Oxycodone every three hours to keep my pain at a manageable level. My wife bought me a therapeutic spa last Christmas which has really allowed me to relax my sore muscles. In spite of drugs which often produce anxiety and depression I am able to maintain an attitude of gratitude!
Glad that my cancer is the type that responds to Zytiga. It seems I've had far fewer side effects than those on other forms of ADT2! Zytiga has kept my PSA low ever since 10/18!
ONC thought Abiraterone/Prednisone was holding cancer at bay but mCRPC metastasized to multi-focal sites in bladder. SURG URO performed TURBT Early March. PSMA scans were not very effective finding anything other than advancing back me Mets. Due to my lack of avidity, Lutetium 177 will prove as ineffective as checkpoint inhibitors and immunotherapy. Next generation gene sequencing indicates that I don't have the right kind of immune system to kick start! ONC will start me on Docetaxel (and possible Carboplatin) soon. Docs say my prostate cancer seems consistent with mutating small cell neuroendocrine cancer. That's why they may add Carboplatin. Matthew Rettig, MD at UCLA wants next PSMA scan to be a FDG PET scan. I'll soon report on my side effects from cytotoxic chemotherapy.
After failing Abiraterone/prednisone, I'm continuing Lupron to thwart testosterone production and taking chemotherapy with Taxotere. PSA at 1.09. All is well.
I lost any hope in using Pluvicto after a PSMA PET scan showed my cells have almost no avidity to express PSMA. I'm now being scanned using FDG PET scans, to avoid that weakness. I tolerated Docetaxel chemotherapy pretty well with the exception of it creating considerable neuropathy in my feet. Unfortunately, imaging showed radiographic progression of my disease even while completing the requisite 6 rounds of chemo. I've been turned down for clinical trials twice by UCLA and City of Hope. I believe my cancer responds so poorly and seemingly independent of my PSA level that researchers fear my data would skew their results. My ONC says we will treat further lesions with radiation.
My ONC knows that my priorities value QoL over number of days, so, together, we have decided not to use the last treatment option in my SoC. My body responded to Taxotere chemotherapy by spreading lesions into new locations, so we've waived treatment with Cabazitaxel (Jevtana). This means that I will no longer have treatment, just palliative care. The date for my next shot of Leuprolide (Eligard) is in early August, however, we will be waiving that treatment since my rising PSA shows that ADT2 is failing. PSA 3/23=0.36, PSA 4/23=1.04, PSA 5/23=2.18, PSA 6/23=2.55, PSA 7/23=4.43, PSA 8/23=? These are, admittedly, low numbers but they're nearly doubling every month. My disease has never responded like most men's cancer. After my ONC performed a RALRP my cancer marker should have dropped to zero and stayed there for 2 years. My PSA climbed to 17.9! In the past cancer would spread independently of my cancer marker, We'll see what it does now that I'm failing on all fronts. I'm receiving palliative care until I'll need to be admitted to hospice. I hope that's a long time, but I'm at peace with whatever transpires!
I entered a radiopharmaceutical clinical trial at City of Hope in Duarte, CA in May of 2024. By June I opted out. The trial affected my hemoglobin so poorly I required a blood transfusion. I entered into at-home Hospice in June, receiving a new walker as well as a transfer wheelchair. My energy is lagging.
Daniel's e-mail address is: pylewyeth AT aol.com (replace "AT" with "@")
