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BobH1
Multiple Myeloma Discussion • October 31
Faced with Choices. Any experiences with these options Will be Appreciated
I have been on multiple regimes since January 2024. First Rev+dara+dex. I was told I went into remission very quickly. But a ferocious rash that was not able to be controlled caused my oncologist to replace Rev with Pomalyst (still with dara+dex), and I came out of remission. Next thread was Dkd (+ IVIG due to 3 infections in 6 weeks+Zometa). But this has not slowed the progression. On Tuesday 10/28, meeting with my oncologist, she said w/ my comorbidities (pacemaker; autoimmune rheumatoid arthritis (AIRA), spinal stenosis, extensive distribution of FDG avid lytic osseous lesions both axial and appendicular, esp. clivus, calvarium, hip, etc, and progression of Myeloma (Lambda light chain) she would like me to consider electing a new treatment. I was provided with MMF publications+Oncolink data sheets, and we went over in great (overwhelming) detail the risks and benefits of the three she was suggesting. She also looked for clinic trials or studies to enroll in, however meds for AIRA (which is well under control) ruled out all but one (2a below). So, I'm faced with making a pick, based on how much risk I am wiling to take: 1) Staying on DkD and adding Cytoxan IV once weekly - outpatient; monitor 2) A bispecific, Teclistamab, IV weekly +IVIG; preferred as inpatient 10 days (off the shelf; could start soon) 2a) Clinical Trial: after 6 months therapy STOP drug and monitor 3) CAR-T therapy (Carvykti); Collect T-cells; 6-8 wks manufacturing; Bridging therapy; 3 days chemo outpatient; Cyclophosphamide+fludarabine (FC IV); THEN CAR-T infusion; mandatory 10 days inpatient (long period before CAR-T, but she thinks I have the time if I decide soon to move forward with this. [Please note: these are my recollections of the conversation and may not be precisely accurate] My mind is spinning as I look at Risk cf Benefits of each! Thoughts? Help? Questions to ask her at next visit 11/14? Thanks!
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Graydc
Multiple Myeloma Discussion • October 29
Platelets
As a result of treatment my platelets are too low. What can be done to help short of getting platelets.
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Marga
Multiple Myeloma Discussion • October 29
M protein, when is it considered a relapse?
Hi there, My husband was diagnosed with MM stage 3 in 2023, had standard protocol treatment until summer of last year when he had a SCT. He started maintenance treatment a year ago. His labs after SCT, specifically M protein were in the range of 0.1 and 0.04. This year the labs have been detected but not quantified until his last one. It’s now up to 0.04 g/dL. It’s the first spike and we are waiting to hear from his doctor if he needs to have his labs done again or any changes in treatment. Is this considered a relapse? How many times and/or increase on M protein quantity is considered relapse? Thanks, Margarita
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DIahanna • Admin
Multiple Myeloma Discussion • October 29
ACA
For those of you who are on and Affordable/Obama Care/Exchange Insurance plan, be aware. The premiums are going up 27%'. This does not include the amount you may experience if the subsidies expire on Nov 1st.
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sharper
Chronic Lymphocytic Leukemia Discussion • October 28
My story
I am 65 years old now but was diagnosed 7 yrs ago with Wait and Watch. Since then my spleen is enlarged, I have swollen lymph nodes in few places, WBC is 41,000 with low platelets and low RBC. Still no treatment at this time but I do have IVIG infusions every 3 months. I know treatment may be on the horizon but until then just trying to live healthy.
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ChioOsuna
Acute Myeloid Leukemia Discussion • October 28
Taking Charge of AML Care: Free Virtual Event
AI-generated title
📣 Calling everyone on the Mountain & West Coast! 🌄🌊 Join us for a free virtual event: “From Diagnosis to Decisions: Taking Charge of Your AML Care” 🩺✨ TOMORROW Oct 29, 2025 at 2:00 PM EDT 🔗 Sign up now: https://healthtree.org/lymphoma/community/events/oct25-mountain-westcoast-aml-diagnosis-decisions Dr. Brian Jonas will walk us through the basics of AML, the importance of genetic testing, and how to advocate for the best care with your healthcare team. You’ll also be introduced to local resources, support organizations, and others in your area who understand what you're going through. 👉 Can’t make it live? No worries, we’ll send a recording to all registered participants.
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Michael
Chronic Lymphocytic Leukemia Discussion • October 27
High WBC & Spleen: Is It Time to Treat?
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I have a 20 year history of cll, thus far just watching. No fatigue or adenopathy to speak of. WBC now up to 200,000. Doctor wants to treat me.Only other factor is my spleen is 17.5 cm. I feel fine. Is the white count or splenic size enough reason to treat?
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Texassuzy
Multiple Myeloma Discussion • October 27
Navigating Medicare Part D in Texas?
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Advice Please:) I’m in Texas and on employer sponsored plan BCBSTX ,receiving myeloma care at UT Southwestern. I read recently that 2026 BCBS will no longer contract with UTSW. 1. Anyone on Medicare having significant problems getting their medication covered? 2. Anyone have a part D Tx Medicare plan they recommend? I’m in N Texas so I understand insurance providers use zip code for plans. I would really appreciate any/all advice. I will reach out to insurance providers as well as our sw liaison at the medical center. Thank you so much! Suzy
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Debbie
Multiple Myeloma Discussion • October 25
Understanding Lab Results For Relapse?
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What on my blood test do I look at to check if myeloma is present again. I don’t see my Dr until mext week and I am little anxious and want to learn which number to look at. Thank yo in sdvance for any help.