Anyone else with MM + AL?

I just got my immunofixation report back and this is what it says. mmunofixation: There is a trace IgG kappa band in the gamma region with co-migrating lambda light chain Note: The trace IgG kappa's electrophoretic migration is similar to the therapeutic Daratumumab. Everything is the same except the co migrating lambda light chain. What does this mean.? I have IGG Kappa myeloma. And I am on darazalex.

Is there anyone here that has a dual diagnosis of MM and ALS? I think it is pretty rare, but I have a support group member that has been diagnosed with both. Thanks,

My younger sister has MM. My older sister just diagnosed with GMUS. My question is, should I get tested? If I should, what test would be best?

Hi my name is Gloria seen my specialist today,I stopped taking my Daratumab shots ounce a month I believe it was giving me a lot of toxins in my body I started to have black taray stool so I ask to be taken off it I've been in remission over 3years and on a mattiance revlimid 2.5mg I was told to stop the 2.5 and go back to 5mg as if the 2.5 is not going to keep me in remission are just the the revlimi,what's going here has anyone had this problem

Hello My 86 mother was diagnosed Dec 2024. We were never given a stage she was at but im assuming early in disease her only symptom was anemia, no lesions, etc. She was started on vrd lite, rev 15mg for 21 day, dex and velcade. Tracking her lab work everything is in tn the normal range except of course hgd, hct,rbc that are kept down by meds. We would like to get her on maintenance doses so her energy levels would improve. Is that a rare request? She is a otherwise active healthy 86 yo

Hi All. First time post and hoping for some insight. We really appreciate all the knowledge shared on this forum and the support and wisdom that you all provide is worth more than you know. Was wondering if anyone has had an SCT with underlying heart issues, such as HCM? Looking into options and possible alternative approaches, is there still a long remission without an SCT?

Hello, bone marrow biopsy is very painful and traumatizing. Has anyone tried an alternative to bone marrow biopsy? My oncologist maintains that bone marrow biopsy is the only way, however, I've heard that there's an alternative through regular blood draw? I would love to hear from anyone who has experimented with an alternative method. Thank you

Hello, I had stem cell transplant for my Myeloma in September 2024. After transplant, I was on dexamethasone and venetoclax (stopped the dexamethasone after about 5 months and just did venetoclax by itself), for maintenance therapy. One year after stem cell transplant, my M-spike just showed up again. My question is, has anyone relapsed on venetoclax, and if so, what treatment did you get on next and how did that work out for you? Thank you

Hi, I have 2 questions I am 65/female and 3 years post SCT, my current status is sCR (stringent Complete Response). I am on 2mg Pomalyst for maintenance (21/7 day cycle) and have been since Sept 2022. My last appointment the idea of going to an every other month for lab work was broached. The monthly reports do give me peace when I see everything is status quo. Is anyone else on this schedule? 2nd - my fingernails are so damaged from this whole journey. Intense vertical ridges. I keep them trimmed very, very short and they still split from the tips down the vertical ridges, snagging on everything. Anyone else have this issue and found anything that works to heal them?

My father has MM. He was diagnosed in December 2022 . He is 84 and is on monthly maintenance, which includes Revlimid for 21 days. He sometimes experiences shakiness in his legs and then sudden weakness where he can’t hold himself up, that he ends up falling. Luckily he doesn’t break any bones, but cuts and lots of bruising. We have brought this to the oncologist’s attention, but says she is not aware of this side effect . Has anyone else experienced this?

I was diagnosed one year ago with SMM. I’ve read a lot about the potential benefits of curcumin to reduce M protein (M spike). We are monitoring and given that my blood work is checked every three months, I figured I can perform my own experiment with curcumin. In June, after taking 2 grams per day of curcumin for three months, my M spike dropped from 2.3 to 2.0. Causation is so tricky to determine, this could be random. I recheck in September. Has anyone else experimented with Curcumin? I also noticed, as a side benefit, I have less normal aches and pains.

One thing I’ve learned on this journey with multiple myeloma is that every single body is different. What works incredibly well for one person might not be the right fit for another — and that’s okay. This disease doesn't follow a script, and neither does the treatment process. That’s why having trust in your oncology team is so important. If you don’t have that trust, it can make an already difficult road even harder. I’m not a doctor, and I don’t try to interpret every medical detail on my own. I leave that to the professionals I’ve chosen to guide me — and so far, they’ve steered me exactly where I needed to be. That said, being informed matters too. Educating yourself helps you feel more in control and ask the right questions, but it’s a balance. You have to lean on your team and let them do what they’re trained to do. As for how long treatment takes or how your body will respond — nobody really knows. It’s deeply personal. The process takes patience, trust, and a lot of strength. But with the right team beside you, the journey becomes just a little more manageable.

If you are considering a life status change that may affect your insurance of you are covered under the ACA or Obama Care, you ay wnt to wait until after November when you will know the changes and how it will affect your associated cost. This is especially important for those on ACA that recevied subsidies. If you make more than 400% of the Federal Poverty level, expect premiums to rise sharply.

Looking for more on MGUS but actual Monoclonal Gammopathy of Neurological Significance and also its relationship, if any, to a high Epstein Barr tier

Hi. Im currently being treated with Kryopolis. Has anyone had side effects like edema and shortness of breath? By the time of my next treatment, those symptoms are gone...but they happen everytime I have treatment.

Social Security has added more diseases to their compassionate Allowances program that will allow people with the diseases to access social security benefits faster. Some of these include pulmonary Amyloidosis, AL Type, Hematopoietic Stem Cell Transplantation. Others that have been on the list you may not be ware of are: Adult Non-Hodgkin Lymphoma, Acute Leukemia, Cardiac Amyloidosis - AL type, Chronic Myelogenous Leukemia (AML) Blast type, Pulmonary Amyloidosis, A-L Type, Refractory Hodgkin Lymphoma, Renal Amyloidosis, A-L Type, Child Lymphoma and Child, Lymphoblastic Lymphoma.