← Return to Diagnosed with AL Amyloidosis. What can I expect?

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@gaetanche

I had a diagnosis in April 2011 of AL amiloidosis with one organ involved, my liver.

My main symptoms was : severe intrahepatic cholestatic jaundice, shortness of breath, my liver was 5 times the normal size. Just prior to my chemo treatments, my liver presented signs of failure. Liver biopsy and a great pathologist who suspected amyloidosis has led to my diagnostic of amyloidosis AL with severe hepatic dysfunction.

I had 8 months of Velcade + Dex followed by a SCT in February 2012.

I am in complete remission since that time and continue to be. I had my annual visit to my oncologist/haematologist in January 2016, the results of my tests are all in the normal range, including my liver.

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Replies to "I had a diagnosis in April 2011 of AL amiloidosis with one organ involved, my liver...."

Thanks Gaettan, encouraging news. I have shortness of breath, dizziness,
extreme fatigue. Massive amount of protein in urine. Anxious to get started
with treatments.

Hello Jenrico;

I am sorry to hear of your recent AL diagnosis. I am sure you are filled with trepidation however there are solutions to managing it. My husband was diagnosed with AL in August of 2008 and at the time had a much higher protein count in his urine by 4x than you. He had both heart and kidney and soft tissue involvement. His journey has involved 4 intensive months of Cybor D then a stem cell transplant. He had to return to chemo after a 2 yr remission with the transplant and remains on velcade/dex today but shows no heart or kidney involvement presently.

The things we have learned is to keep him very hydrated (keep flushing those kidneys by drinking a lot of water daily), exercise every day (even during the transplant he walked on a treadmill), & eat nutritiously (use supplements). It sound simple but he stays dedicated even on days he does not feel well. He works full time, and emotionally we have decided to “live life as normal as possible:”

We do get involved with learning as much as possible about the disease and current treatment options. There is a great deal of opportunity to get informed through support groups, webinars, and articles and I encourage you to do so. Do not pay any attention to the survival rates because everyone is different and the new treatments are game changers from the past.

Stay focused on getting healthy and staying healthy with good habits. If you do that from what you have shared, my feeling is you will be fine in the long run.

TMousetis

@tmousetis, Thank you for sharing. I am unfamiliar with treating AL. Your sharing of your experience has provided all of us with excellent health advice that would benefit many of us! Congratulations, and take a bow for your dedication, your positive attitude, and your determination to go the long journey. I hope that you are doing well, and continue to reap the benefits of being proactive about your care. Rosemary