Hi all! What are things that you would like to learn about in our 2024 educational webinars, specifically about kidney involvement and myeloma? What topics are important to you? What questions do you have for doctors? I want to make sure we are having educational events that are beneficial to you. Thanks in advance for your help!!

I am 30 days into the Talley chemo treatment. My Car-T lasted 22 months. So far I’m feeling fine. Other than losing my sense of taste, I’m doing good.

Looking for advise and guidance on reactions between suppliments and medicines. Can anyone recommend a medical internet site where you can impute your info on med's & sup's and get feedback ???

My husband had car-t 4 months ago. His platlets are still low and receives hemoglobin shots. He also has to go for weekly bloodwork and s once monthly iGG infusion. Doing good otherwise but we had many tough spots. Anyone else experience low blood numbers that took a while to come back? They said the car-t cells are still very active.

I was diagnosed with MM after I broke a vertebrae in an auto accident and another one after I slipped on a wet deck and hit my back. My first diagnosis was stage IIIB. My kidneys were shutting down and they debated whether I should go on dialysis or try to flush them with IVs of constant liquid. I was lucky because the liquids worked, but I still have elevated levels every time I have blood tests. There are treatments that I couldn't have because of my kidneys. I have been out of remission since 2020 but not on any treatment. My most recent blood work was last week and I won't have to go on treatment yet. I am also allergic to the treatment drug Revlimid and any drug in that class so not having treatment is a good thing.

My hematologist has suggested while I'm taking Lenalidomide and am in remission, I might want to undergo two years of zoledronic acid (Zometa) once a month. I don't have lytic lesions or bone problems at the moment. He cited a study out of the UK that correlates Zometa with increased life expectancy. Any thoughts or experiences out there?

Hi, This is my first post. i was diagnosed in July 2021. I went through SCT in Jan 2022 and I have been in remission. I am on maintenance therapy of Revlimid, Kyprolis, and a Steroid (40 mg iv). I was wondering if anyone else is taking Ozempic while on chemo meds? The steroids are adding on weight week after week and increasing my sugar levels. I started taking Oxempic last week and I am wondering if anyone has anything to share about taking it while having MM? Any negative issues that affected your MM care or remission status? Or positive? Thank you! Kathy

Good Afternoon, I would like a Multiple Myeloma Coach to navigate through Multiple Myeloma information as well as financial resources such as co-pay assistance, transportation, etc. Thank you

My acupuncturist recommended drinking Chaga tea to help with neuropathy. Has anyone tried this? And if so, does it help?

My husband is struggling with the maintenance therapy (REV, Dara). We are looking for a medical second opinion and want to work with a Hemoc that believes in Holistic treatment as a supplement to traditional medicine. No geographic preference, we can go anywhere. One contributor to this forum mentioned Acemannan (Aloe), Beets and Wild yam was prescribed as maintenance by her doctor, 7 years and counting with no relapse or other meds. Has anyone heard of this?

I have another question related to CAR-T. My understanding is that IVIG is being recommended for 12-18 months post infusion. Is anyone getting Subcutaneous IG approved and is that through Medicare Part D or B?

I have had a head cold, congestion and swollen glands for a few days. I’m scheduled for my pet scan in a week. Will this cold mess with my results?

HealthTree 2.0 Launch | Using Technology and Revolutionary Approaches to Cure Blood Cancers https://www.youtube.com/watch?v=hdcnT7iu4wU

Join the HealthTree 2/0 Launch: https://www.youtube.com/watch?v=hdcnT7iu4wU

I have my ASCT scheduled for November. I’m nervous. I know I am in good hands with my team at UNC Chapel Hill. I’ve read the literature about what to expect. I’m looking for lessons learned from those who have previous experience. Thanks!

I was diagnosed with MM in May. Plasmacytoma, surgery, radiation, 10% plasma cells in bone marrow, standard risk. Blood chemistry is great; I feel great. My oncologist mentioned a stem cell transplant. From what I read almost everyone gets a SCT. What I want to know is whether there is anyone out there who has chosen NOT to get a SCT? Why did you make that decision?

My husband recently went through CAR T therapy (Carvykti). He is about 4 months post-infusion. He spent 21 days in the hospital with some CRS and HLH. We are back in hospital as he seems to have developed Parkinson like symptoms. There is very little studied about this so attempting to see if anyone else has had a similar experience and what has become of it. Any insight would be greatly appreciated.