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 (And yes I am very open minded about what I read on google knowing it can be very outdated) So my question is, has anyone else had this observation?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

I don't know how to reply all, but a deep, heartfelt thanks to everyone who replied to my intro message with encouragement and tips! I'm very glad to join this community and will also join the FB group. I'm happy to say that after my first 42 day cycle my numbers went down significantly. I'm doing a clinical trial with isatuximab. I am at Dana Farber and feel like I have a good care team.

Anyone experienced phantom smells with MM? All of a sudden, over the last couple of weeks, I am smelling automobile exhaust all the time. It smells exactly like my classic Mustang with no catalytic converters, but I haven't even started that car in well over a week. My meds haven't changed. I got a brain MRI (both with and without contrast) a couple of weeks ago, and they said it was unremarkable. I even got a PET scan a few weeks back, and they said there was nothing unexpected in it. But I'm smelling car exhaust everywhere I go. Anyone else experienced that?

Has anyone experienced necrosis of the jaw? My husband was diagnosed in Feb 2024 and has had three infusions of Zometa as part of his treatment. He is scheduled for SCT beginning of September and has noticed an area in his jaw where bone is exposed. We are concerned this will delay his transplant. We need some insight as to how necrosis of the jaw is treated. Thanks

A phase III study is open comparing a new drug called mezigdomide (CC-92480), carfilzomib and dexamethasone vs. carfilzomib and dexamethasone. Mezigdomide is part of a new class of drugs called CELMoDs. Study participants who have relapsed or refractory myeloma, at least one prior line of therapy (that included either lenalidomide or 2 cycles of an anti-CD28 monoclonal antibody) are welcome to join. Learn more: https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT05552976?cid=s_2839274

We invite you to participate in our 3-year study on bispecific antibodies for multiple myeloma! Share your real-world experiences through 8 short surveys over several months. Open to patients 18+ currently on treatment. Your insights matter! For more info, contact HealthTree Patient Navigators at support@healthtree.org Participate here: https://buff.ly/3zFeG23

Hi my name is Mildred and my husband was diagnosed with multiple myeloma cancer on December 2019 and the journey began that same day because of how advanced his cancer was at that particular time. We started chemo the day he was diagnosed and almost seemed like it was right away the Dr started to prepared him for a "bone marrow transplant" 3 months after being in treatment. Unfortunately a week before the transplant he was diagnosed with COVID March 2020 needless to say he was hospitalized at a time in which people nor Drs knew what to do about it but he was in the hospital for 10 days. When he made it home was a race with his treatment and making sure he was eating clean in order to put the bone marrow transplant on the table again and in May 2020 he received it and it went well,he was home in 2 weeks.This treatment was important to us because it could give him 2-3 years when initially he was giving 9-12 months but unfortunately 8 months later the cancer was active again so a combination of different meds was giving to him as well as different blood test and that's when we realized that he is "high risk". resistant to treatment. They tried different meds and 15 months ago He was giving "cart-T cell in a clinical trial that ended a month ago and his team said that they have nothing else for him despite of him developing a secondary cancer (Prostate cancer) but they would see him for blood work every 3 months to track the status of both cancer.