Diagnosed with AL Amyloidosis. What can I expect?

Posted by jenrico @jenrico, Mar 13, 2016

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

I have been recently diagnosed with AL Amyloidosis in March 2019. I was experiencing swelling of the feet and legs without any obvious reason. I went to to PCP where he ran a variety of blood test which determine Ped the lack of protein in blood – which he then followed up with urine test which confirmed the extreme amounts of protein. It wasn’t determined that a kidney biopsy was required to determine the root cause of the issue. The diagnosis of Amyloidosis was made following the results. The next thing required was the Bone Marrow Biopsy to establish what stage I was. Fortunately it was found early and received a Stage zero with minimal damage to my kidneys. I have just completed two cycles of Chemo (Velcaide) to get me to a point of remission in preparation for autologous SCT. Thank you for this forum!! – Nikki S

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@nick0820

I have been recently diagnosed with AL Amyloidosis in March 2019. I was experiencing swelling of the feet and legs without any obvious reason. I went to to PCP where he ran a variety of blood test which determine Ped the lack of protein in blood – which he then followed up with urine test which confirmed the extreme amounts of protein. It wasn’t determined that a kidney biopsy was required to determine the root cause of the issue. The diagnosis of Amyloidosis was made following the results. The next thing required was the Bone Marrow Biopsy to establish what stage I was. Fortunately it was found early and received a Stage zero with minimal damage to my kidneys. I have just completed two cycles of Chemo (Velcaide) to get me to a point of remission in preparation for autologous SCT. Thank you for this forum!! – Nikki S

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@nick0820 Thank you for posting about your diagnosis and treatment. How are you feeling? Do they have any idea when you might be ready for the SCT? Here at Mayo Clinic Connect we are not doctors, but fellow patients and family members who share our experiences and offer support. Being able to "talk" to others in similar situations is critical for our mental health.
Ginger

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@gingerw

@nick0820 Thank you for posting about your diagnosis and treatment. How are you feeling? Do they have any idea when you might be ready for the SCT? Here at Mayo Clinic Connect we are not doctors, but fellow patients and family members who share our experiences and offer support. Being able to "talk" to others in similar situations is critical for our mental health.
Ginger

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Thank you Ginger! I am surprisingly feeling very well at this time! I continue to go through normal daily activities such as work, travel – really no majors changes to my life at this time. I may get a little more tired than normal SOME days however for the most part there have been no drastic changes to my life on a whole. Even going through the Chemo treatments – I still feel very well!! In fact, I feel great!! I expect to be going through the preliminary testing for the SCT within the next 2-3 weeks. My local oncologists are hoping to have the procedure completed sometime in August 2019 – so I can be on the road to recovery during the Fall months. My goal is to be well enough to have a wonderful Christmas with my family!! I have learned a lot of great information on this site – I hope to continue to share my experiences with this rare – hard to diagnose – disease. Thank you so much Ginger!!

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@nick0820

Thank you Ginger! I am surprisingly feeling very well at this time! I continue to go through normal daily activities such as work, travel – really no majors changes to my life at this time. I may get a little more tired than normal SOME days however for the most part there have been no drastic changes to my life on a whole. Even going through the Chemo treatments – I still feel very well!! In fact, I feel great!! I expect to be going through the preliminary testing for the SCT within the next 2-3 weeks. My local oncologists are hoping to have the procedure completed sometime in August 2019 – so I can be on the road to recovery during the Fall months. My goal is to be well enough to have a wonderful Christmas with my family!! I have learned a lot of great information on this site – I hope to continue to share my experiences with this rare – hard to diagnose – disease. Thank you so much Ginger!!

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@nick0820 Please keep us in the loop of communication! It's great you are not letting this get you down, and We're with you, hoping for a good holiday season with your family. In 2015, when I was diagnosed with an ultra-rare kidney disease, the renal pathologist had said it might be amyloidosis, but until they had the last puzzle pieces from the kidney biopsy, they weren't sure. He knew it would be easier to treat that than what the final diagnosis was.
Ginger

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@nick0820

Thank you Ginger! I am surprisingly feeling very well at this time! I continue to go through normal daily activities such as work, travel – really no majors changes to my life at this time. I may get a little more tired than normal SOME days however for the most part there have been no drastic changes to my life on a whole. Even going through the Chemo treatments – I still feel very well!! In fact, I feel great!! I expect to be going through the preliminary testing for the SCT within the next 2-3 weeks. My local oncologists are hoping to have the procedure completed sometime in August 2019 – so I can be on the road to recovery during the Fall months. My goal is to be well enough to have a wonderful Christmas with my family!! I have learned a lot of great information on this site – I hope to continue to share my experiences with this rare – hard to diagnose – disease. Thank you so much Ginger!!

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Hi @nick0820, I want to add my welcome.
You may be interested in this video by Mayo Clinic experts. Martha Grogan is a leading specialist in amyloidosis
+ Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

I appreciate your willingness to continue sharing about your journey. Don't hesitate to ask questions too.

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@colleenyoung

Hi @nick0820, I want to add my welcome.
You may be interested in this video by Mayo Clinic experts. Martha Grogan is a leading specialist in amyloidosis
+ Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

I appreciate your willingness to continue sharing about your journey. Don't hesitate to ask questions too.

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Thank you so much Ginger! I will certainly review the links that you’ve provided! Greatly appreciated!! I am fearful and of course apprehensive— but I’m very hopeful all will be well following this journey! Thanks!

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@nick0820

Thank you so much Ginger! I will certainly review the links that you’ve provided! Greatly appreciated!! I am fearful and of course apprehensive— but I’m very hopeful all will be well following this journey! Thanks!

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My apologies!, Thank you so much Colleen Young!!

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Hello Bob, so sorry to hear of your wife’s diagnosis. Hopefully her treatment can be performed at a Mayo facility as they are familiar with this disease. They literally saved my life for which I will ever be forever grateful.
In late 2012 I began puffing up everywhere. After months of seeing countless doctors, with zero success, a kidney biopsy that was analyzed at Mayo Rochester indicated I had Amyloidosis. In my case, fortunate it only affected my kidneys & bladder.
More than likely she will have minor surgery for a port.
After an extensive physical, they collected 3,000,000+ of my stem cells, Then here comes the nasty, Chemo injection. Not fun…..after things settle down the stem cells are put back, where “hopefully” they take and grow.
At 6’ 3”, my low was 149 lbs, now retaining 170. Chemo not a great weight loss program.
It was determined mine was caused by Agent Orange exposure in Vietnam Nam. I have a Velcade infusion every 2 weeks…..forever.
There is so much more to tell, but the Mayo staff is 5*, and explains everything in detail, and layman’s terms so you understand.
Best wishes…..
Bob Toth

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@rtinaz

Hello Bob, so sorry to hear of your wife’s diagnosis. Hopefully her treatment can be performed at a Mayo facility as they are familiar with this disease. They literally saved my life for which I will ever be forever grateful.
In late 2012 I began puffing up everywhere. After months of seeing countless doctors, with zero success, a kidney biopsy that was analyzed at Mayo Rochester indicated I had Amyloidosis. In my case, fortunate it only affected my kidneys & bladder.
More than likely she will have minor surgery for a port.
After an extensive physical, they collected 3,000,000+ of my stem cells, Then here comes the nasty, Chemo injection. Not fun…..after things settle down the stem cells are put back, where “hopefully” they take and grow.
At 6’ 3”, my low was 149 lbs, now retaining 170. Chemo not a great weight loss program.
It was determined mine was caused by Agent Orange exposure in Vietnam Nam. I have a Velcade infusion every 2 weeks…..forever.
There is so much more to tell, but the Mayo staff is 5*, and explains everything in detail, and layman’s terms so you understand.
Best wishes…..
Bob Toth

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@rtinaz, I would like to say Welcome to Connect and to say thank you for taking the time to share your experience. I do not have
amloydosis, but I know that your experience is going to be encouraging to anyone who does, and also to their loved ones. I believe that other patients are going to want to ask you questions and to hear more of your experience.
Do you have to be hospitalized for the Velcade infusions?

Thank you, and Bless you for your service in Viet Nam.

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