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.

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Rosemary, Volunteer Mentor | @rosemarya | Mar 14, 2019

In reply to @bob100 "Hi Colleen, the link you sent does not open for some reason. Could you confirm the..." + (show)

@bob100, I am going to tag @colleenyoung so that she will get a noticication that you were speaking to her.
I hope that you and your wife are learning more about her condition and treatment options as you proceed through thre testing.

bob100 | @bob100 | Mar 16, 2019

In reply to @rosemarya "@bob100, I am going to tag @colleenyoung so that she will get a noticication that you..." + (show)

Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused

Rosemary, Volunteer Mentor | @rosemarya | Mar 19, 2019

In reply to @luckyme54216 "The ONLY symptom I had that brought me to a doctor was that I had the..." + (show)

@luckyme54216, I would like to drop in on you and ask if you have been able to get your appointment with a specialist in Green Bay.

I do not have any experience with what you are going through, however, I am familiar with the stress and fear and uncertainty. For myself, I actually found a tiny bit of relief when my condition had a name. I remember when the hepatologist told me that he had 'good news and bad news' for me. (good news-diagnosis: bad news-PSC(progressive liver disease)

Recently, @bob100 has shared some of his experience about educating himself about AL and its effect on the body and organs.

luckyme54216, How are you feeling? And have you learned any more about your condition?

Rosemary, Volunteer Mentor | @rosemarya | Mar 19, 2019

In reply to @bob100 "Thank you. I have been educating myself daily on AL and its affect on the body..." + (show)

@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?

bob100 | @bob100 | Mar 19, 2019

In reply to @rosemarya "@bob100, Thanks for sharing what you have learned through your own research. You are correct in..." + (show)

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.

evaxmas | @evaxmas | Mar 19, 2019

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!!

Justin McClanahan, Moderator | @JustinMcClanahan | Mar 19, 2019

In reply to @evaxmas "My mother has been ill with a variety of issues that no one could figure out..." + (show)

@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/

bob100 | @bob100 | Mar 20, 2019

In reply to @evaxmas "My mother has been ill with a variety of issues that no one could figure out..." + (show)

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.

Rosemary, Volunteer Mentor | @rosemarya | Mar 21, 2019

In reply to @bob100 "Thank you! Sherry was forgotten by the vascular doctor and as a result will not have..." + (show)

@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/

Rosemary, Volunteer Mentor | @rosemarya | Mar 21, 2019

In reply to @evaxmas "My mother has been ill with a variety of issues that no one could figure out..." + (show)

@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/