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DIahanna • Admin
Multiple Myeloma Discussion • August 15, 2025
Faster Access to Social Security Benefits
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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.
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chocolateAnemone
Multiple Myeloma Discussion • August 15, 2025
A Tip for Managing Your Records on Healthtree
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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.
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Cmckee68
Multiple Myeloma Discussion • August 15, 2025
Managing a New MGUS Diagnosis and Fear
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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!
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Cyndy
Chronic Lymphocytic Leukemia Discussion • August 14, 2025
Anyone Else Managing Low Counts On Oral Meds?
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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.
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DIahanna • Admin
Multiple Myeloma Discussion • August 14, 2025
Copay Funds Open for Amyloidosis, Lupus, Asthma
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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.
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Pauline
Multiple Myeloma Discussion • August 13, 2025
Starting Krypolis, Sarclisa, Dex: What to Expect?
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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!