Mayo Clinic Connect
Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.
Hi @jenrico, Welcome to Connect.
We hosted a webinar last June called “Amyloidosis – What Patients Need to Know” https://connect.mayoclinic.org/discussion/amyloidosis-what-patients-need-to-know. In this webinar Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provided an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms.
I’d like to introduce you to @gaetanche @mvpdda and @tmousetis who also have AL amyloidosis. Hopefully they will join this discussion thread and share their experiences about treatment and managing symptoms.
In the meantime, can you tell us a bit more about yourself. What, if any, symptoms are you experiencing? What led to your being diagnosed?
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Thanks for a quick response –
Discovery of excess protein in my 24 hr. urine collection. (2168)
Extreme fatigue, shortness of breath, dizziness upon standing.
Have had bone marrow biopsy, echocardiogram, ekg, chest xray, numerous
Have seen Drs. Leung, Erickson.
Liked by Colleen Young, Connect Director
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.
Thanks Gaettan, encouraging news. I have shortness of breath, dizziness,
extreme fatigue. Massive amount of protein in urine. Anxious to get started
It is normal to be anxious with treatments and uncertainty. Keep hope and fight against the disease. My life expectancy at the time of my diagnosis was only three months. Five years after I have good health. Good luck Jerrico.
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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.
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Thank you @gaetanche and @tmousetis for responding to my tagging you on this discussion and for sharing your experiences with @jenrico.
Waiting to see what regimen of meds I will need to take. Waiting to see how
much heart involvement there is.
My dizziness is coming from a decrease in blood pressure when standing – in
a test yesterday, My bp was 134/62
while lying down and it dropped to 60/20 upon standing.
I’m not eligible for a stem cell transplant because of my age – 70+.
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 (email@example.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.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director
I am fortunate to live an hour away from Rochester. mn. Am having the
attention of great Amyloid specialists.
@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
@jenrico You are fortunate, indeed, to be near to Rochester. I just want to check in and ask how treatment is progressing. How are you feeling? Rosemary
I've just got my diagnosis of AL amyloidosis today after having a bunch of testing and two biopsies done. I have so many questions, I don't even know where to begin. I am in the Green Bay area and my doctor is sending me to her colleague in Milwaukee to get a second opinion to make sure I don't need any radiation in the area that I had my amyloidosis removed from. I had a skin lesion pop up out of the blue. It was only a spot on my skin and the entire thing was removed. All the tests came back negative but my urine shows way excessive amounts of protein and my doctor doesn't understand why. She said she's never seen Cutaneous Amyloidosis (which is what I was found to have initially) and so she wants me to go see this other doctor in Milwaukee. She also ordered a cardiac MRI and a biopsy of fat tissue just to be sure there are no amyloids hiding anywhere that they missed with any of the other imaging that was done.
luckyme54216 @luckyme54216, I want to welcome you to Connect. I can understand why you have so many questions about your diagnosis. I am also happy to hear that your doctor has referred you to someone who might be able to provide a second opinion. I don't know anything about AL Amyloidosis. I did locate this information from Mayo Clinic that provides a good description of the diagnosis and treatment for this rare condition. I also read that Amyloidosis is often overlooked. And that Mayo Clinic has doctors who specialize in diagnosing and treating protein disorders of the blood, such as amyloidosis. This could be an option for another opinion for you.
What kind of symptoms are you experiencing? When is your appointment?
Hi There, my name is Bob and My xwife was recently diagnosed with AL. Kind of in the same place you are now, looking for answers. One thing you need too know is you can’t believe everything you read about this disease. It effects each person differently. Sherry found out about her AL when she changed health plans. Thank God she did, because the first blood test reviled that her kidney function was only at 21%. We have been with our doctor for almost 14 years and found out she did nothing when her last blood test showed her kidney at 48%. She more then likely would not be doing dialysis at this stage had she been told. I would like too hook you two if you would like. Please let me know.
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