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A MyAmyloidosisTeam Member asked a question 💭
Orange nsw Australia

How long has everyone been fighting with this is have al amyloidosis it's effecting my kidney but im short breath and it's in my bone marrow I finally start chemo 12oclock this Thursday im just wanting info please

October 7, 2025
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Answer Summary

Members shared their deeply personal timelines of living with AL amyloidosis, with diagnosis journeys ranging from a few months to several... Read more

Members shared their deeply personal timelines of living with AL amyloidosis, with diagnosis journeys ranging from a few months to several years, and many describing misdiagnoses, exhausting symptoms like shortness of breath and bone pain, and the toll on their ability to work and function. Several members offered hope and encouragement about treatment, sharing that chemotherapy regimens like Velcade, Darzalex, and Dexamethasone helped bring their disease under control, with some achieving remission or near-normal levels and returning to living their best lives. A recurring theme was resilience in the face of discouraging doctors or painful setbacks, with members insisting on the importance of staying mentally grounded, leaning on supportive loved ones, and refusing to give up hope no matter what anyone says.

A MyAmyloidosisTeam Member

I took chemo for 3 years. I was so tired after about an hour after treatment. This lasted for about three days and then it was almost time for another treatment. I did not lose my hair. Seemed like I could taste the chemo and smell on my skin. My husband is a cardiologist and he helped me tremendously. He insisted I walk and to come to table to eat. He help encourage me to take my pain medications. My Amyloidosis was in my bone marrow and effected my kidneys. My Palaitive care lady told me I had absolutely nothing to look forward to and I would be at Mayo for a long long time. I refused a wheel chair at entrance and tried even harder to over come and I did. I am in remission and dealing with bone pain and fatigue. I will overcome this too and see my youngest grandchildren graduate from high school and hopefully from college.

October 10, 2025
A MyAmyloidosisTeam Member

You should report him for sure!

October 12, 2025
A MyAmyloidosisTeam Member

Great great great news! You Go! Enjoy!

November 8, 2025
A MyAmyloidosisTeam Member

Like Theresa, I also had velcade, darzalex & Dexthramethasone. chemo regime which brought my product levels to almost normal. after 2.5 years of treatment, my oncologist has told me to go live my best life with 6 month check ups with her!!! Don't listen to the "Nay Sayers!!!"

November 7, 2025
A MyAmyloidosisTeam Member

The entire process for diagnosis is RIDICULOUS! Here we are, at least 3 years into searching, after visiting 5 different neurologists, UF Shands hospital, Vanderbilt ALS clinic, Emory in Atlanta in January 2026, DAT Scans through Piedmont Health, carpal tunnel-bilateral, can’t breathe, no balance….upside, I’ve lost 30 pounds!

I feel that your husband displayed a great deal of control when you were confronted with those two individuals mentioned. My control/patience is long gone! I’m not nearly that nice….I wish you the very best of luck, and just like you, I will keep fighting ✌️🤬

October 14, 2025

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A MyAmyloidosisTeam Member asked a question 💭
Orange nsw Australia

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