I was by coincidence diagnosed with free light chains MM in September last year. Stage 1. Standard risk. Feel (and felt) 100% well. 50 years old. I have now gone through 6 rounds of induction treatment and my FLC levens can no longer be detected in blood or urine. “Normal levels”. I have always been hesitant to ASCT (as I am worried about QoL aspects medium - long term) and although ASCT is my doctors recommendations at this stage they have agreed to give me 1-2 more rounds of KRD. Then we will take a bone marrow test to check for MRD neg. My questions: 1) has anyone here achieved MRD neg/CR through induction treatment (before ASCT) ? 2) if so has anyone postponed/saved ASCT for later? If so what has been your experience? 3) what have your doctors recommendations been? In The Determination phase 3 trial Dr Paul Richardson concludes that for young transplant eligible patients achieving CR/MRD neg through induction treatment the results are the same ASCT /no ASCT. For those patients (young, CR and standard risk) postponing ASCT “makes a great deal of sense” Dr Richard says. Yet, it is not standard of care…

Looking for men who have PLL leukemia

Hello. I am autistic. I found out in December. It's still sinking in. Everything is different now, time feels fleeting. There's not enough time to process, to make sense of it all, and to feel caught up. And yet, with a new perspective, time passes more slowly. More deliberately. More intentionally. I would like feedback, from any who have gone through this before. Chemo is May 13th. I have been briefed on what to expect and the formalities. Hospital policies and procedures, forms and releases, disclosures, disclaimers, descriptions. But it's just paper, with no emotion, and no convincing way to convey expectations. Going in blind, I would like insight into what to expect. The parts that are not written or discussed. The stories only told by family and survivors of what they encountered, experienced, and felt. What stood out, and what what missing. What it felt like, and how the days passed. Thank you..

I am 7 months post aSCT in remission on maintenance therapy for Plasma cell leukemia, an aggressive form of myeloma. An MRI shows severe L hip arthritis which needs replacement as I have had difficulty walking the last few months. I am wondering if others have had joint replacements post SCT and how long they waited after SCT to do so? Thanks

I am a myeloma patient trying to help another one who recently started Talquetamab. She is suffering from extremely painful skin peeling on her feet and hands. Please comment if you have experienced, how it was treated, whether it was resolved, and whether it improved over time. Thanks much.