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Posts (3)

Mar 15, 2016 · Diagnosed with AL Amyloidosis. What can I expect? in Blood Cancers & Disorders

Do not worry Jenrico. Your symptoms are common for AL but will improve the more you get chemo. As far as not qualifying for transplant, many folks do not have a transplant and the newer drugs seem to be as good as getting a transplant. It is important to eat prior to chemo and make sure you training yourself to drink a lot of water. You want to be well hydrated on chemo.

I do not know where you live but if you can try and attend an Amyloidosis support meeting. A very nice person named Muriel Finkel (muriel@amyloidosissupport.com ) runs these meetings across the country. If you email her she will respond. Here is the link to their website: http://amyloidosissupport.org/index.html. They have useful information and you can meet folks that have or are going through the same thing as you.

Be strong minded. It will get better.

TMousetis

Mar 14, 2016 · Diagnosed with AL Amyloidosis. What can I expect? in Blood Cancers & Disorders

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

Jun 4, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

At the end of the presentation you mentioned there are possible toxicity issues with long term use of Bortezomib. Could you explain? My concern is that for relapsed AL Amyloidosis post stem cell transplant Bortezomib or Bortezomib/Dex is one of the main chemo therapies patients are placed on indefinitely.