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! 💜

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.

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.

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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.

I'm 54 yr F, diagnosed in February 2024. Had 4 months of induction and then an ASCT in July 2024. Started on 10 mg of daily Revlimid in Sept, was dropped down to 5 mg daily in January because I was still quite tired and had a bit a neuropathy in my thumb. That changed helped. I had verteobroplasty in the beginning of March (6 vertebrae were done). I am getting Zometa infusions every three months. So that's the background: I'm finding my nails are very thin and are peeling. I am keeping my nails very short but was wondering if anyone has added supplements in like biotin or collagen? Or do you have any other suggestions?

My daughter will be having SCT in May. Hopefully, this doesn’t sound like a foolish question but she has 2 small dogs who have provided so much comfort to her since her diagnosis of stage 3 MM in October ‘24. The dogs sleep on her bed and really haven’t left her side. My concern is that once she gets the Hickman port placed next week and then the SCT, how close should her 2 little dogs be to her? I have my opinion but would appreciate how others have handled this type of situation.

Hello 👋 I pray for everyone with this horrible disease. My mom is 75 and recently diagnosed with Plasma Cell Leukemia. She is not a candidate for SCT due to age and other comorbidities. She is receiving DRKD treatment and is doing very well...for now. Her numbers have improved significantly and she's technically in a partial remission. Im so scared for her. Im just wondering what her quality of life will improve. Im wondering what happens when this cocktail is no longer working for her. What is her survival plan or life expectancy for someone who can't have SCT? She is high risk RSS III .

Relapsed on linalidomide 25 mg and Ninlaro 4 mg and now doing Darzalex FasPro, Dexamethasone, Palmalyst 4 mg. After 2 treatments with Darzalex/Dex by day 8 having what seemed liked seasonal allergy seems to be side effect of Palmalyst anyone had similar experience (started with sneezing, progressing to lots of mucus production and coughing). Doc seems to think body will adjust.

I am seeking a second opinion with someone who has focused on PCL, not only in research but with patients. Not an easy question. Any suggestions? Thanks.

I need to provide a letter of my 2025 ACA monthly premium breakdown to the LLS Co-Pay Assistance program. I just need a statement from the marketplace in writing that shows the premium amount breakdown for me and my husband. Basically LLS needs to see how much of the premium is my portion and which one is my husband’s because they will only pay for my portion, of course. How do I contact the marketplace about my 2025 monthly premium breakdown? Thank you in advance for your help.