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Dear fellow caregivers and MM sufferers, I have been using ChatGPT to help me understand blood work and bone marrow results for the last year of treatment, which began with my wife's kidney failure in January of 2025 and the subsequent diagnose of MM. Her recovery has been spectacular with minimal side effects. With help from Chat, I have composed the following letter (a bit long perhaps) in preparation for our January 6th oncologist appointment. Please comment as you see fit, particularly as to whether or not I am being reasonable. Current Therapy (as of Dec 2025) • Anti-CD38 monoclonal antibody infusion every 2 weeks • Lenalidomide 25 mg, days 1–21 of 28-day cycle • Corticosteroids: weekly oral dexamethasone plus IV methylprednisolone with infusions • Zoledronic acid monthly • IVIG monthly for hypogammaglobulinemia ________________________________________ Objective Evidence of Disease Control Bone Marrow • No detectable malignant plasma cells • Hematopoiesis recovered CBC Trends (Jan–Dec 2025) • Early severe cytopenias resolved • Sustained hemoglobin ~13–15 g/dL • WBC stable • Platelets fluctuating but largely safe (120–220k) • Persistent macrocytosis consistent with treatment effect SPEP / Immunoglobulins • No rising monoclonal spike • Persistent hypogammaglobulinemia (gamma globulin ~0.5 g/dL) • Pattern consistent with treatment-related immune suppression, not progression Ferritin • Elevated but declining over time • Consistent with inflammation/transfusion/steroid exposure rather than disease activity ________________________________________ Clinical Interpretation • Current laboratory abnormalities are more consistent with cumulative treatment toxicity than active myeloma • Patient appears to be in a deep, durable response approaching functional remission • Ongoing full-intensity therapy may be contributing to: o Immune suppression requiring IVIG o Cytopenias and macrocytosis o Steroid-related adverse effects ________________________________________ Proposed Stepwise De-escalation (Risk-Minimizing) 1. Steroids (highest priority) • Reduce weekly dexamethasone dose by ≥50% or discontinue oral weekly dosing • Rationale: minimal added disease control in deep responders, high toxicity burden 2. Lenalidomide optimization • Reduce dose (e.g., 10–15 mg) • Or modify schedule (e.g., 14 days on / 14 days off) • Rationale: marrow stress, cytopenias, immune suppression 3. Infusion spacing • Consider extending monoclonal antibody infusions to every 4 weeks • Alternatively, trial close-monitoring pause 4. Bone agent reassessment • Consider spacing zoledronic acid to every 3 months or discontinuation if no active bone disease 5. IVIG reassessment • Goal: reduce need by allowing immune reconstitution following therapy de-escalation ________________________________________ Monitoring Plan to Mitigate Risk • Monthly CBC, SPEP, free light chains • Symptom surveillance • Rapid re-escalation if biochemical or clinical relapse detected ________________________________________ Key Question for Discussion Can we preserve disease control while reducing treatment-related toxicity and improving immune recovery through a cautious, stepwise de-escalation strategy?
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Iliana • Admin
Multiple Myeloma Discussion • December 24
Our Holiday Gratitude for This Community
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From everyone at HealthTree, we extend our warm wishes for a peaceful holiday season, surrounded by those who support and care for you. ❤️ We are sincerely grateful to every patient, caregiver, loved one, specialist, and collaborator whose voice and presence shaped our community this year. Your experiences, trust, and engagement help guide our work and strengthen efforts to improve the quality of life and access to better treatments for all patients. Thank you for being part of HealthTree and for allowing us to support you on your journey. With appreciation, The HealthTree Team
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3sisterskaye
Multiple Myeloma Discussion • December 23
Light chains went up after
I’ve been on Talvey for about two months. Worked great This blood test showed light chains went up to 33. I know that’s low but was worried the mm was starting to come back already. Was wondering if this has happened to anyone or just adjusting? I have a call into my doctor but thought this would be quicker. Thank you.
Thumbnail for Remote Patient Monitoring for Outpatient Bispecific Therapy in Myeloma | Sridevi Rajeeve, MD
Playlist: ASH 2025

Remote Patient Monitoring for Outpatient Bispecific Therapy in Myeloma | Sridevi Rajeeve, MD

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Thumbnail for Arlo-Cel - GPRC5D CAR-T: High Response Rates in Heavily Pretreated Myeloma | Susan Bal, MD
Playlist: ASH 2025

Arlo-Cel - GPRC5D CAR-T: High Response Rates in Heavily Pretreated Myeloma | Susan Bal, MD

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Thumbnail for Bispecific Antibodies in CNS Myeloma: What Patients Should Know | Mahmoud Gaballa, MD
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Bispecific Antibodies in CNS Myeloma: What Patients Should Know | Mahmoud Gaballa, MD

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Suzukiviolin25
Multiple Myeloma Discussion • December 22
Question for those with t(11;14) and quadruplet treatment (Dara KRD)
I am now midway through cycle 2 of Dara KRD and I have translocation (11;14). I've heard so many different things about this from various myeloma experts. One of things I have heard is that this cytogenetic feature may not respond as well to quadruplet induction therapy. I'm just curious to find out if anyone has this same translocation and how they have responded to quadruplet therapy. Did you achieve MRD negativity (without transplant)? I do know that Venetoclax is very effective but only available after first line of treatment for those with this cytogenetic feature. I also know MM is not the same in any two individuals but I am curious to hear how you all fared.
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XimenaG • Admin
Multiple Myeloma Discussion • December 21
Share your reason with us, let's work together
At HealthTree, we show up every day with one purpose: to help find a cure. Every conversation, every program, every patient we support, it’s all driven by heart, commitment, and the belief that together, we can change outcomes. Our team gathered to reflect on Why We Give: our time, our passion, our knowledge, because we are HealthTree. And the truth is… we can’t do this alone. Our community is the power behind every breakthrough. Now we invite YOU to join us. Download the sign, write your reason, take your photo, and share it with us. 📣 Let’s make noise. Let’s stand together. Let’s find a cure. Your voice matters, and your reason may inspire someone today. Request your sign: https://healthtree.org/blood-cancer/community/why-i-give-campaign OR socialmedia@healthtree.org
Thumbnail for An Overview of the Most Recent Studies in Multiple Myeloma | Claudio Cerchione, MD, PhD
Playlist: ASH 2025

An Overview of the Most Recent Studies in Multiple Myeloma | Claudio Cerchione, MD, PhD

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Thumbnail for Daratumumab + lenalidomide vs lenalidomide as myeloma maintenance  | Mitul Gandhi, MD
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Daratumumab + lenalidomide vs lenalidomide as myeloma maintenance | Mitul Gandhi, MD

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Mallorylee7
Multiple Myeloma Discussion • December 21
New Here - Writing For My Dad
Hi everyone, I am writing for my dad who is about 100 days post stem cell transplant. He has been doing very well and up until two weeks ago did not have any gastrointestinal issues. However, two weeks ago he was violently ill overnight with vomiting and diarrhea all night. He thought it was something he ate however it happened again this week randomly. He hasn’t changed his diet or his medications. He thought it was the food, but now that it has happened twice I’m wondering if anyone has experienced this sort of delayed reaction from the transplant?
Thumbnail for Why Some Newly Diagnosed Myeloma Patients Don’t Reach a Deep Response |Jonathan Kaufman, MD
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Why Some Newly Diagnosed Myeloma Patients Don’t Reach a Deep Response |Jonathan Kaufman, MD

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Thumbnail for Multidisciplinary approaches to improve prognosis prediction | Claudio Cerchione, MD, PhD
Playlist: ASH 2025

Multidisciplinary approaches to improve prognosis prediction | Claudio Cerchione, MD, PhD

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Thumbnail for Duffy Null- Could a Simple Blood Test Guide Your Myeloma Treatment? | Lauren Merz, MD
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Duffy Null- Could a Simple Blood Test Guide Your Myeloma Treatment? | Lauren Merz, MD

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