I was diagnosed with Systemic Amyloidosis AL March 2024. @ the Mayo Clinic Rochester. What a ride it has been. Came home and started tx. There were days I thought today’s the day! I’m gonna die. But I’m still here. I did the chemo/ steroids and 2 shots a week for 6 months. My numbers for Light chains were being very cantankerous, they were dropping but not fast enough. According to the new oncologist I got to see in September of ‘24. She changed things up no more chemo/steroids dropped to 1 shot of Darsalex a month, she put me on 400 mg of Venclexta a day. My numbers dropped dramatically. I am happy to say that my numbers are below the ‘normal’ range. I feel good most days. I do have problems with dehydration. But am actively doing better & keeping hydrated, but still is hard at times.
My problem is my blood pressure, it falls low upon standing so I have a wheel chair I call Capt Dan(yes)! I get around pretty good. With help of course- thank the Lord for my husband and family for their help. Sure puts life into prospective when something like this happens to you.
I have never read where someone had or was taking Venclexta. On here. So I thought I’d reach out. & say 👋🏻.
I have to get another BMB before my oncologist will lower the dose of the Venclexta. We talk again on October. Hoping this will happen soon. Maybe the dehydration will not so much a problem.
Thank you listening. Have a great day!