Hello friends. I am a 53-year-old single mom to a teenage daughter. I was diagnosed on March 20 of 2024. I have high-risk myeloma, with four chromosomal anomalies. Currently on daratumamab, bortezomib, dexamethosone, lenalidomide. I had a spine surgery in April to stabilize the area where the myeloma ate my T1 vertebra. Planning a stem cell transplant for the end of October this year. I have no comorbidities. Every now and again, I look at my test results, genetics, etc. and search PubMed (I work at a med school). The words I see are not good. "Aggressive," "poor outcomes," "mortality." Not sure what I'm asking here. Maybe for hope? Does anyone here have a similar genetic profile?

Hi I am new to the group. I was diagnosed with smoldering myeloma in June 2024. I’m IgG lambda. Low Risk. Anyone the same?

hello, I'm Trey glad to check out this group I've had been given access 3 years ago but now I'm ready to have a chat. Has anyone used rubber bands to strengthen themselves after they transplant any tips would be greatly appreciated thanks ciao for now.

Pfizer is interested in finding patients who have been on Elrexfio (elranatamab) who would like to share their story as a patient ambassador. If you are interested, please email support@healthtree.org with your Name and Email. Have a great weekend ahead!

Anyone else using Sarclisa?

My DIL had a bone marrow biopsy 8 months after a SCT and 5 months after maintenance therapy with Darzelex monthly and Revlimid 21/7. The flow cytometry showed an 0.011% of abnormal cells out of 1million. The oncologist told her she is MRD positive but the research I read from the NIH states any result 0.020% or lower is considered MRD negative. Does anyone have different information from their oncologist regarding these results? Thanks

Welcome!

I'm new to group. Is there a starting p lace?

Hi all! I hope everyone is doing well. Is anyone else dizzy? Any idea what is causing it? I was diagnosed with MM last summer at 37 yrs old and started 16 weeks of RVD in August. I had an auto SCT December of 2023 and have been in remission since. I’m on monthly infusions as maintenance (velcade, faspro and solumedrol) along with a folbic acid supplement. It’s not traditional dizziness like the room is spinning but it almost seems neurological. The ‘dizziness’ is at its worst when walking down aisles at stores. It seems to be lessened when I have an electrolyte packet and the folbic acid, but it doesn’t go away completely. It does not seem like a change in vision.

I am an 82-year-old woman who has Been diagnosed with MGUS for 25 years. After my husband passing in March 2024, I was diagnosed with smoldering multiple myeloma. I am seeing a hematologist at City Of Hope and I also have a hematologist at Saint Joseph’s Hospital in Orange County. My question is, I have been exposed to Covid by my granddaughter five days ago. I have taken two tests and they have been negative. however, this morning, I took a test and there was a very faint line under the T category. Should I be concerned about the faint line under the T category? If I have Covid, what should I be doing to keep safe? I will take the test again tomorrow to see what it shows. Thank you.

A phase III study by Bristol Myers Squibb is open comparing a new oral drug called mezigdomide (CC-92480), bortezomib and dexamethasone vs. pomalidomide, bortezomib and dexamethasone. Mezigdomide is part of a new class of drugs called CELMoDs. Study participants who have relapsed or refractory myeloma, prior exposure to lenalidomide and at least 1-3 lines of therapy are welcome to join. Learn more about this study here: https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT05519085?cid=e_2566337

I was diagnosed with MM in October of 2021 I did 5 cycles of RVD and a SCT in March of 2022. Labs looked great by April 2022 and I’ve been considered in complete response and MRD negative. As is common, my immunoglobulins have been low ever since my SCT. When diagnosed my IgAa was over 8000. Since my SCT it has been anywhere between 7-14. My IgG is also low and I’ve been getting IvIG when my levels are below 550. I can usually get two months of normal levels with a treatment. My oncologist told me that sometimes the treatments can also help the IgA. But that hasn’t happened. About six weeks ago I started taking a probiotic thinking it might help with some acid reflux/heartburn. Last week I had my 3 month full lab panels. After getting the results I was very surprised to see my IgA levels was just 3 points below normal at 47. I found this intriguing so I googled asking if probiotics can help IgA levels. It revealed that it is possible. (And yes I am very open minded about what I read on google knowing it can be very outdated) So my question is, has anyone else had this observation? I would like to study this in more depth but not sure how to go about it. And my oncologist at a previous appointment shrugged off this possibility when I asked about taking an IgG supplement I had come across. At the time I did not realize that this supplement was a probiotic. In the meantime I started a different brand. I’ve heard many times that illnesses often are a result of gut bacteria. I only get my IgA checked every 3 months, so I won’t have another result until November but I am very curious to see if this was just a fluke or if it perhaps is something to be encouraged about. I do get my IgG checked monthly and I’m hoping it improves it also to the point I can avoid the IvIg infusions as often. Obviously this wont change that I am living with MM but if it can help my immune system I am all for that. Anyone have any of their own experience to share?

Hello, I was diagnosed with Multiple Myeloma in September 2023 at age 37, and did the quadruplet induction therapy (dexamethasone, velcade, daratumumab, and revlimid). Initially this therapy worked, but after about 4 cycles (4 months), it stopped working and my M-spike became stagnant 0.26. As a result my doctor switched me to daily venetoclax (800mg) with dexamethasone once a week (20mg), because I have translocation 11;14. Venetoclax has worked wonders; it wiped out my M-spike from 0.26 to ZERO in just 60 days. I am now on my 3rd cycle (90 days) of venetoclax, and am scheduled to undergo autonomous stem cell transplant next month. My doctor is considering putting me back on venetoclax as a maintenance therapy after transplant, since it has worked so well for me. I have the following questions: Has anyone taken daily venetoclax (800mg) with dexamethasone for three months? If so, what were your biggest side effects (mine is erectile dysfunction, low libido, and fatigue)? If you had these side effects, did they go away once you stopped taking venetoclax? Has anyone taken venetoclax, gotten stem cell transplant, and then used venetoclax for maintenance afterwards? If so, what was the outcome? Thank you, I look forward to your response 🙏

I have a question - my husband has been on pomalyst/dara for 1 yr now...and it seems he always gets sinus infections....he's had 5 sinus infections within the last year....I know the drug effects the respiratory....is this just going to be on going...we always seem to have to get a zpak from the dr. .....should we be increasing our Vitamin C or is this just typical....my husband has always been prone to getting a sinus infection even before he had myeloma....any comments

Has anyone tried the Pomalyst/darzalex regimen and how was it tolerated? Success in keeping your MM from progressing?

I was diagnosed with MM a couple years ago and did several cycles of Revlimid/Velcade/Dexamethasone. It did what it was supposed to do and brought my m-protein level down to where it was almost undetectable but I had to stop because the ve!cade caused severe neuropathy in my feet. I stayed on low dose Revlimid as "maintenance therapy" but my m-protein level has started to steadily climb so I am getting a second opinion on a couple weeks from a MM specialist at Uof M because my oncologist wants to start me on Pomalyst/Darzalex/Dexamethasone and I'm hesitant due to the almost debilitating neuropathy I've been left with. I am 73 years old and chose not to have SCT. My cell counts remain good but I'm fearful all the time that will change without aggressive treatment. Has anyone dealt with severe neuropathy in their feet? I've tried everything I can think of to relieve it. Medication hasn't helped (neurontin/lyrica/cymbalta etc ) so I stopped those and every over the counter cream/oil/soak/gummie/acupuncture / massage......etc etc etc I need some input from people who have experienced the same thing. I fight feeling defeated every day.

Hi, I am 59 years old. I diagnosed with MM at the end of 2022. And Otoloo stem cell transplant applied in 2023. I stayed 1 month in hospital. But MM still survive and I am using revlimid (together with other 6 medicines, dometimes other vitamins can be added acc to results) since 10 months all my blood values changing everymonth not stable. But hopefully I do not face heavy pain at my back like at the beginning of my ilness. Does anyone use revlimid and what is your progress would you please share with me Thank you