@19lesterk I am so sorry to hear about your dad's diagnosis. My dad passed away and lost his battle with cancer just over 2 weeks ago. First off, PCL is a blood cancer, and you'll want to find a good Hematologist. They're an oncologist for cancers that aren't masses/solid. I also understand your frustration concerning reading and researching vrs what you're being told. My dad's PCL was "put to sleep" (with blood/liquid cancers, they don't technically go into remission), but the kappa light chain proteins and other things that are in the blood instead of in the bone marrow, where they're supposed to be can go back down to normal levels and no longer be found in the blood stream. My dad's treatment was subcutaneous chemo injections and some bone-strengthening infusions. My dad was 1st diagnosed with PCL in September of 2023, and by June 2024, it was "asleep" (yes, that's the medical term the doctor used), but his cancer came back in October 2024. This time it was multiple myeloma, and while his numbers were rising, they "weren't rising fast enough to treat, and he was stable." I'm happy to share my experience. My dad broke bones by simply grabbing a glass of water, his bones were so weak in the few months. Also, if you don't like what the doctors are telling you and you think they're blowing smoke and placating you, TELL THEM THAT!!! I've found that until it's close to the end, a lot of doctors are afraid to tell families the hard truths for fear the families will sue etc. They want to give hope. but sometimes what families need, along with hope, is reality, worst case. Hope for the best, plan for the worst, and anything in between is gravy.
I am so sorry to hear about your dad's passing. You and your family are in my thoughts and prayers, and I hope you are all able to heal together. My dad had fractured two vertebrae and a rib, which led him to the emergency room and ultimately got us this diagnosis. They did a kyphoplasty to repair the fractures in his spine, which seems to be helping with the pain. They have started him on an induction chemo regimen called Cy-Bor-d which he is receiving inpatient at the hospital for at least 21 days. After that, they are switching him to a new outpatient regimen called dara-KRd. After about 3 cycles, we are going to try for an autologous stem cell transplant. Did the doctors at Mayo do this for your dad? Or did they ever mention the potential of trying investigational meds through clinical trials? Thank you for your sharing your experience and advice with me!