Hello I am Interested in anyone that has had treatment-Bispecific and how the side effects were. My doctor just suggested this treatment option.

For those of you on Social Security SSI, SSDI or retirement, you eed to be aware of an emergency notice that the Social Security Announced. Effective immediately, all overpayments made in error either by the administration or by recipient incorrect reporting will now have to be paid back immediately, not over a period of time, However, for those listed above it will be a clawback of 50%.

I am a 67 year old woman recently diagnosed with MM. My oncologist also strongly suspects I have cardiac AL Amyloidosis. Both the bone marrow biopsy and the fat pad biopsy were negative for amyloid, but now he has scheduled a 90 minute cardiac MRI and if that is inconclusive, he wants a cardiac biopsy. Are false negatives common with amyloidosis? Has anyone else been put through this? With two negative tests already, I question the need for further testing. Thanks.

My doctor passed away.

Hi I had a SCT back in October 24. All went pretty well except I am still finding my red blood cells are struggling to return to normal. I got as high as 100 but am back down to 88. I take 10mg Lenalidomide a day and my doctor wants me to come off it for a month to see if it improves my red blood counts. Has anyone else had this problem?

For those of you who are on maintenance and are seen by an MM specialist, how often do you see that specialist? I receive treatment at a local infusion cancer center, and I go every three months to a large cancer hospital for complete myeloma blood work and to meet with my myeloma specialist. He wants to alternate those visits with his ARNP which I have resisted thus far.

Feeling anxious, I am a 65 yr old F, diagnosed January 23, 6 cycles DVRD and auto stem cell transplant September 23. I have been on maintenance since January 24 10mg lenalidomide 21/7. My light chains started increasing a few months back possibly due to vaccination process. Last month M spike was detected again 0.02 and this month it is 0.03. After 2 BMB’s in 2 weeks I have low cellularity so they can’t do all the testing they need. Has this been an issue for anyone and did it impact your relapse treatment options?

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!

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

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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