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.

@rosemarya

@bob100,
Thanks for sharing what you have learned through your own research. You are correct in advocating for patients to educate ourselves about our conditions. And searching the internet can be a wonderful source of information – as long as we go to reputable and respected sources, and are aware of outdated information.
I also encourage patients to take a loved one or a responsible individual withi them to appointments as an extra set of ears, and an additional voice.
Does xwife continue on dialysis? Does the AL diagnosis require any extra dialysis concerns/complications?

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Thank you! Sherry was forgotten by the vascular doctor and as a result will not have the graft put in until the 27th of this month. It will take an additional 2 weeks to heal before they can use. Her kidney function is around 10% now and we have an appointment with her kidney doctor this Wednesday to find out what too do. It’s my understanding 10% is the bottom and dialysis is required. There are so many doctors involved with this disease that it’s hard to stay on top of them.

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My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!

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@evaxmas

My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!

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@evaxmas, welcome to Connect. You may notice I combined your discussion with an existing one titled, "diagnosed with AL amyloidosis, what can I expect?" I did this so you could meet a few of the other members who have posted about facing the diagnosis of amyloidosis. If you are responding by email you can click on VIEW & REPLY to see where your post is and to read through some of the other posts made by members on this similar topic. @evaxmas, is there a specific part of your mother's diagnosis that you would like the other members to comment on? You may also want to read through the following discussions on both AL amyloidosis and

Multiple Myeloma:
https://connect.mayoclinic.org/discussion/what-a-shocker/
https://connect.mayoclinic.org/discussion/treatment-for-amyloidosis-and-multiple-mylemoa/

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@evaxmas

My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!

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I am sorry to hear about your mother and fully understand your concern and worry. I am not a doctor and what I know about the disease I have learned in the past four months. What you are asking for none of us are able to answer. I can tell you that a late diagnosis is not a good thing. One question I have is has your mother had an echocardiogram? If she has had one your cardiologist should be able too provide you with a prognosis. My wife has AL and the number one problem I have had is the lack of communication between all her doctors. If you do not educate yourself on this disease you are not able to understand a lot of what is being said. It has multiple implications and organ involvement any one of which could fail if not caught early enough. It also sounds like you may have already got your answer and I would suggest that you spread the love with not only mom but all your family, and know that god is watching over you. These are hard times for you and your family and they will need a strong loving person like yourself.

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@bob100

Thank you! Sherry was forgotten by the vascular doctor and as a result will not have the graft put in until the 27th of this month. It will take an additional 2 weeks to heal before they can use. Her kidney function is around 10% now and we have an appointment with her kidney doctor this Wednesday to find out what too do. It’s my understanding 10% is the bottom and dialysis is required. There are so many doctors involved with this disease that it’s hard to stay on top of them.

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@bob100, That is frightful that the graft procedure was delayed. Unfortunately things like that do happen. When I was referred to be scheduled for my pretransplant evaluation at my local transplant center, the scheduler quit, and my paperwork sat on the empty desk until I finally called my head doctor, who made it happen. I sincerely hope that she will heal quickly so that she can begin dialysis. It sounds promising to hear that there are several doctors involved in this.

Here is a new discussion, that I want to share. Kidney & Bladder- Support for Dialysis Patients
https://connect.mayoclinic.org/discussion/support-for-dialysis-patients/

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@evaxmas

My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!

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@evaxmas, I don't have any experience to share with you. I want to say that I am aware of how difficult it can be for the caregiver to handle the stress and uncertainty. Do you have others who are available to support you during this difficult time? I want you to know that there is a Caregivers Group on Mayo Connect. https://connect.mayoclinic.org/group/caregivers/

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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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