Diagnosed Mgus IgGkappa with 0.05 mspike 6/23 . All markers in normal range as of 5/24. 70 on 7/31/24 other then this M spike excellent health no medications, been seeing intern once yr. Hematologist once to just wait and watch mgus markers. Asking for any other proactive treatment, specail diet, other actions to be doing now to reduce m spike and possibly of progression to myeloma??

I'm listening to Beat Back Cancer Naturally by Dominic Brandy, M. D. on Audible and it is helping me make the necessary changes in hope it will make a wonderful difference in my health. Plant based nutrition, specific supplements, exercise, stress reduction. 👍

Hello All, first ever question, however have read prior postings and have gleaned some very informative answers so here goes: Do to issues with side effects my 28 day 10mg Lenalidomide maintenance regimen was reduced to 5mg, 28days. With each delivery comes a patient guide, side effects page, and my insurance carrier's retail price. I had expected a reduction in the retail price as the dose was cut in half and was very surprised that the 5mg price was exactly the same as the 10. Asking if anyone knows and/or understands how prices are determined and set. Things that make me go MMMMM. Thanks in advance for the opportunity.

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?