Hi everyone, hope you are all doing well. I wanted to ask a few questions about monitoring while in PR or VGPR and would really appreciate your experiences. For those who are in PR or VGPR: 1️⃣ How often do you get your M-spike and free light chains checked when things are stable? Is it every cycle, or does the testing interval become less frequent over time? 2️⃣ Do your numbers sometimes fluctuate up and down from one test to the next? If yes, what kind of variation have your doctors told you is considered normal or not concerning? 3️⃣ At what point do you and your medical team feel a drug may be losing effectiveness? Is resistance concluded only after several rising results, or can it be identified quickly? I would be grateful to hear how others have experienced this part of the journey. Thank you so much for sharing.

Hi, I started on Elrantamab (T-Cell engager) in late June. It’s been really successful but since then I’ve had the Rhino Virus and Pseudomonas infection. Despite IV antibiotics (4 days as I was desperate to get home), I still have it. Has anyone else had this and had it cured? It’s really getting me down. Thanks 🙏🏽

Hello Everyone, Well, I check in next week for my transplant and I am a bit freaked out. The thought of the melphalan has me waking up in the middle night. I have faith in getting through this but I find myself getting more anxious by the day.

I am trying to get as much information as I can for my daughter who has been diagnosed with CEL and it has been advised she have a bone marrow transplant.

Anyone have a normal bone marrow post transplant (both morphology and flow) and normal light chains along with a persistent serum M spike (in my case unquantified due to migration to the beta region) and positive immunofixation (IFE)? This leaves me at VGPR despite negative marrow results. My questions: what happened in the long run; was your doctor dismissive, or not, of the persistent M spike and IFE results?

Hello. Do any of my myeloma friends have an AARP United Healthcare Advantage plan? (not Medigap or Supplement) How has it worked for you? (The time period has passed for me to get into a Medigap plan without underwriting).

Anyone taking venetoclax? I would love to hear how you responded, how quickly and hos you tolerated it. Thanks

Hello, I'm currently reviewing Med Supp and Plan D insurance options and would like opinions/feedback on which carrier(s) are easiest to work with - claim processing, customer service, overall best experience. My background: Diagnosed Oct 2023-Kappa Light Chain, ASCT May 2024, currently receiving Darzalex Faspro monthly and Lenalidomide 10mg 21/28. Medicare effective February 2026, female, no smoker, lives in IL - Will County. Thanks to all who respond!

I just started 1mg Pom on Halloween as my M-spike had crept up from 0.1 to 0.6 and we wanted to tap it back down. Light headaches, no nausea, light fatigue (nothing compared to higher doses of Rev). I had a massive case of Rav Rash followed by two weeks of traveling prickly patches that calmed with a cocktail of OTC antihistamines. However. The last week or so I've noticed two spots of skin on both hips that are really sensitive, sometimes painful, and not constant. Anyone else have sensitive splotches of skin?

Medicare Open enrollment for Part D comes to a close on Sunday, Dec. 7th. Make sure you go in and do some comparisons and make sure your meds will still be covered under your current plan. There have been a lot of changes for most if not all plans.

Does anyone hold daily maintenance dose of Lenalidomide when ill with a cold/flu per instructions from your specialist?

I've been diagnosed with MGUS for 2 years after routine bloodwork showed an M-spike. Recent bloodwork has me concerned. I see my Dr in 2 weeks to discuss the results but I'm looking for clarity before my appointment. My lambda light chains have always been rising, and usually Kappa Light chains are slightly elevated too. This round has my lamda rising even more, and Kappa within normal range. My ratio is now low .08. My Dr has always reassured me that I am low risk, but from what I know these numbers are going in the wrong direction. What questions should I have for my Dr?

We all give for a reason. Today, our HealthTree team is sharing theirs, a reminder that our mission is driven by compassion, commitment, and the strength of this community. Now we invite YOU to join us. Print the sign, write your reason, take a photo, and share your “I Give Because” message here on Connect. Your voice might inspire someone else to give, support, or simply feel less alone. Download your sign: https://healthtree.org/blood-cancer/community/why-i-give-campaign Together We Care. Together We Cure.

📘 My Myeloma Journey — A Hopeful Story of Healing and Remission My story with multiple myeloma began in late 2024, when a large thyroid mass and some unexplained symptoms led my doctors to look deeper. Tests revealed IgG Kappa multiple myeloma, and a bone marrow biopsy showed the cancer was active. It was frightening, but it also marked the beginning of a journey toward healing. I started treatment right away with a strong combination of medicines, including Darzalex. Those early months were challenging, but something very important happened: my body responded beautifully. Month by month, the numbers moved in the right direction. The mass shrank. The bone lesions stabilized. The cancer proteins dropped—fast. By the spring of 2025, my blood work showed no measurable M-protein, meaning the main marker of myeloma was essentially gone. Through the summer, scans continued to show improvement. Each appointment brought a bit more hope. Then came September 2025: my PET scan showed no evidence of active myeloma anywhere. It was the kind of news every patient hopes for. And in November 2025, I received one of the strongest signs of remission possible: my MRD (minimal residual disease) test came back below the limit of detection. In simple terms, they could barely find even a trace of myeloma cells—an outstanding response. Today, I am officially in deep remission. I continue on maintenance Darzalex to keep everything stable, and my doctors are very pleased with how well I’m doing. This has been a long road, but it is a story filled with progress, resilience, and God’s grace. My myeloma is quiet, controlled, and being held firmly in check.

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If you need some help understanding tests results diagnosis etc. ChatGPT app will help you understand better. It’s a good AI tool for Myeloma. Just share info etc and ai will explain. It will not give a diagnosis.