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.

Remember to give permission for your medical records to be downloaded automatically to Healthtree (the data will be all in one place for you, and made anonymous for researchers. One of my medical centers requires renewal every three months so I put it on my calendar. Yesterday I had difficulty with one, contacted staff through the chat box and she came up with a work around for a place that requires two step authentication. Shout out to Maru! She is ALWAYS helpful and positive.

Thank you I will look forward to class

Hi new to this early stages of Mgus M protein high and lots of other things cdk3 trying to eat like Dr said and walk at least 5 days a week helps me a lot just scared!

Hello I have CLL and was diagnosed 15 years ago and have been lucky to not have to have infusion much. Have been on 4 different oral drugs since 2017 having trouble with blood counts too low anyone else have the same problem and what are you trying. I am on started on Imbruvica then Calquence then Venetoclax and now Japrica. I am trying B12 supplements to try and help but that does not seem to help. Thanks for any suggestions.

Good afternoon, Has anyone received blood products post CARVYKTI? If so have you had any complications from the transfusion itself? Thanks in advance!

CPR Funds Now Open: Lupus, Amyloidosis, Asthma The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies.

I have a 66 year old coachee (diagnosed in Apr. '24)that has relapsed and will be starting Krypolis, Sarclisa, and Dex. She is apprehensive about the new treatment and what to expect. She has some significant neuropathy and is taking B12 injections and magnesium. I have no personal experience with this line of treatment and some of the information I found here on Healthtree seemed pretty technical. If anyone has personal experience or suggestions for reading I would appreciate you sharing. I didn't want to overwhelm her. Thanks all!