Greetings! I was diagnosed with Stage 1. IGgA Lambda multiple myeloma Jan 2022. Induction therapy 6 cycles RVD. ASCT August 2022. Maintenance therapy starting Jan 2023 with Revlimid 10mg, 14 days on 14 days off. Last week I had a sudden onset of Raynard’s Syndrome to my index and ring finger on my left hand. It resolved quickly under warm water. I notified my hematologist and my pcp. Both said not to worry unless it continues to happen or does not resolve. My question is: have any of you who have a similar situation as myself had this happen to you? Thank you so much!

'Posting to get started to connect with others. We're overwhelmed & not pleased with practitioners we've dealt with so far. No treatment thus far. We were dealing with 2 different oncologists with differing approaches & one of them recently told us to make a choice. Soon after we chose him, we received a letter from him stating he was leaving. We recently met with him. He advises to start treatment. We are trying to obtain consultation with another oncologist in the office. The office service to connect with someone since has been difficult.

I just received my results for this test. There is not a line item mentioned for a Monoclonal Protein, could this mean there wasn't an m-spike detected? I had a CAR T in August 2025 and have had a very low m-spike since but was told it could just disappear. Because I haven't experienced a report with no m-spike, I am uncertain how to read the report. I won't be seeing my local oncologist again until the end of January. So, I am hoping someone here may be able to help interpret it. Thank you!

I might have mentioned this before in this forum but am reading research that contradicts regarding symptoms that those of us with MGUS/SMM are showing when so much that you read says it does not have symptoms. What is correct? What symptoms have you all experienced? My biggest symptom seems to be fatigue at unexpected times.......... Thanks for the input. I think they need to research this more

I have done ASCT on 28 February 2025 but I’m still experiencing low waist back pain has anyone experience this and how did you overcome it ?

Anyone hear anything about this med that was used in trials and showed great promise, possibly avoiding a SCT by using this drug and lowering numbers and the disease in general.

Does the caregiver have any restrictions for what they can personally do while the patient is at their appointments during the first few weeks of an outpatient ASCT? We were told by the hospital that they discourage caregivers from joining all appointments so they don't get burned out, so this is downtime for the caregiver. During this downtime, can the caregiver engage in normal activities? Curious what others experiences have been. Can the caregiver go exercise for example? What about going to lunch, a coffeeshop, the gym, or grocery shopping? Or do they have to stay in isolation. It seems they should be fine to.engage in some normal activities provided they use precautions around the patient, just like hospital staff.

Question for people who had CarT treatment: What was your free light chains and M spike around 100 days after the treatment?

What is it like going through CAR-T? What advice would you give a person to make it go smoother?

The pharmacy is charging $51,000 for one 1800 ml injection plus the hospital fees. What are you seeing as pharmacy charges for faspro?

For those of you who have taken advantage of the subsidies for ACA premiums, you may see a significant increase in your premium which you will be responsible for. Make sure you are taking advantage of grants that may be available to you to help offset the costs of your tratment. Reach out to a financial coach to discuss your options.

Hello! I have 2 issues I would love your advice with: 1. I am about 2 months post SCT. I think I just developed neuropathy on both my hands but not sure since I have never had it before. Is it normal to develop neoropathy 2 months after SCT? I did not experience this during my induction treatment. What exactly does neuropathy feel like for you guys? What has worked for you to relieve symptoms? 2. I am about to start maintance drugs. Doctor suggested Velcade. But with my neoropathy I am not sure. Worried it will make it worse, I did not experience this while on velcade during my induction treatment. Has anyone been on this for maintance and how did it work for you? Other option is Lenalidmide. I am concerned with the possible sife effect of other cancers....I was also already on this with no major issues just worried since I will be on it for a long period. Thank you for taking the time to read my concerns!

As we close our 'Why I Give' campaign, we would like to thank every patient, caregiver, supporter, volunteer, and team member who shared their reason. Your voices filled this season with hope. At HealthTree, YOU are the heart of our mission. Your courage, your stories, and your willingness to stand with us are what move research forward and bring us closer to cures every day. Thank you for showing up. Thank you for believing in what’s possible. #WhyIGive #WeCareWeCure #HealthTreeGives #BloodCancerCommunity #TogetherForACure

Hi everyone — I hope you had a great holiday. My mom is preparing for a stem cell transplant at the end of January, and my dad has received an in-person job offer starting around that time. As we plan for caregiving, we’d appreciate guidance to help us decide whether he should accept the role. After the transplant, what level of at-home support is typically needed, and for how long? Is 24/7 care required, or could she be alone during the day if my dad worked an in-person 8–5 job? From an infection-risk standpoint, is it generally safe for the primary caregiver to work outside the home and return daily? How do families usually manage work and caregiving during recovery?

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?

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

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.