Your Feed

Filter by
See content from
Back to the latest
Avatar
IndigoPanda
Multiple Myeloma Discussion • May 1, 2025
Discontinuing Acyclovir on Dara Maintenance?
AI-generated title
Hi everyone, Regarding acyclovir: Who, currently on monthly maintenance with daratumumab, is still taking it? I have been receiving a sub-q injection of daratumumab every four weeks since March 2023 and have been taking 400mg of acyclovir twice daily since September 2022. Has anyone in a similar situation managed to discontinue acyclovir entirely? TIA!
Avatar
Iliana • Admin
Multiple Myeloma Discussion • April 30, 2025
Share Your IV vs. SubQ Treatment Preference
AI-generated title
This study, led by Dr. Larry D. Anderson Jr. from UT Southwestern Medical Center, aims to understand better how multiple myeloma patients feel about receiving treatments under the skin (subQ) versus through the vein (IV), and how those preferences affect their quality of life and treatment choices. Adults (18+) with a multiple myeloma diagnosis can take a 15–25 minute survey (26–50 questions) covering their diagnosis, treatment experiences, and preferences between subQ and IV administration, along with basic demographic information. Your answers are anonymous, and your insights are truly appreciated! You can take the survey here: https://htree.org/subcutaneousintravenous
Avatar
Shesopettie
Multiple Myeloma Discussion • April 30, 2025
Approaching SCT: Sharing Your Journey?
AI-generated title
Hey all! I was diagnosed with Multiple Myeloma the week of Thanksgiving 2024. Other than a low iron test I had no symptoms. Fast forward, I started treating 3 weeks later due to Insurance shenanigans, but treatment with Lenolinamide 10mg, Velcade, Darzalex Faspro and Dexamethasone 40mg , has been successful so far. I'm currently in Cycle 5 of my treatment plan.. I had a Bone Marrow Aspiration last week and my numbers are good so I will start testing May 1st for Stem Cell Transplant. So many questions I should have but a bit overwhelmed by the fast pace of it all. I'm still working and blessed to have that provision, but would love to hear about others walk with Stem Cell Transplant. Thanks in advance! 💜
Avatar
Lynne56
Multiple Myeloma Discussion • April 30, 2025
Ongoing Blood Monitoring: Which Markers Do You Track?
AI-generated title
Hi Everyone I was dignosed in January 25,have completed 4 cycles of Induction, am starting Stem Cell mobilisation next week and all being well will do the Auto SCT in June. I had 75% plasma cells infiltration at diagnosis,Fish showed extra signals of FGFR3,CCND1 and MAF suggesting gain of at least part of chromosomes for p,11q and 16q-so I have high risk genomic abnormalities,.and I was 45000mg/L with my Kappa Light Chains, which I suppose puts me in the ultra high risk group. In Australia the 4 line induction therapy including Dara has not been approved ,although it is allowed as a second line treatment if standard induction doesn't work.Im guessing its a cost issue as all MM treatment in Australia is free,but given my doctor thought it neccessary and most people in these groups (from the US anyway)got it and my doctor has classed me as ultra high risk,I found it a bit frustrating. However I have responded very well to the 3 line therapy so she is not overly concerned,Anyway I digress.. Could you tell me exactly what markers you are looking at from your blood tests on an ongoing basis? Thankyou.
Avatar
Brianna0329
Multiple Myeloma Discussion • April 29, 2025
Navigating MM with Liver Disease & No ASCT
AI-generated title
Feeling lost. My husband was diagnosed with MM-Lambda Light Chain in December. It was quite a shock, but we eventually wrapped our brains around it and felt comfort knowing there was a clear path ahead. He started on DRVd and has been responding well (over 90% disease burden reduction so far), so we assumed he would be doing his ASCT soon. However, we also recently found out he has another disease, called Hemochromatosis, which causes an iron overload and can damage the liver. Unfortunately, upon his screening, we were told his liver was in a compensated cirrhosis stage from the disease so ASCT would no longer be an option. As a result, his DRVd regimen will be extended two more cycles, he will then switch to maintenance, and we’ll just hope for the best. I feel overwhelmed now because his situation is so unique and isn’t following the normal course of DRVd to ASCT to Maintenance. Before this latest bombshell, I was finding a sense of belonging, hope and comfort from other people’s stories, but now I don’t know where we “fit” anymore. I guess I’m just looking for others who may have experienced another significant co-morbidity, such as liver disease, and still managed to do well.
Avatar
DIahanna • Admin
Multiple Myeloma Discussion • April 29, 2025
Financial Aid Tip: Home Care Grant
AI-generated title
Healthwell has a Cancer Home Care grant for 2K available. Phone app only. It helps pay for durable equipment and other needs
Avatar
Suzukiviolin25
Multiple Myeloma Discussion • April 29, 2025
Sharing Experiences with t(11;14) Mutation?
AI-generated title
So my MGUS (diagnosed in 2017) has progressed to smoldering myeloma (20-30%) involvement (bone marrow biopsy 10 days ago) with kappa lambda light chain ratio of 128 and M spike of 2.6. No anemia, normal kidney function and normal calcium numbers. I am in a close watch and wait with labs in 6 weeks and a possible total body MRI. My last PET was clear about a month ago. Just received FISH testing results and I have the following t(11;14) mutation. Does anyone have this same mutation? Have you responded well to treatment? I have IgG Kappa if that helps. I am being cared for at MSKKC for more context.