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@debdeb

What were your symptoms leading up to diagnosis?

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Replies to "What were your symptoms leading up to diagnosis?"

I had no symptoms. It was discovered in a blood test for neurological
issues. I am in the smoldering stage at the moment.

I was just dx a week ago through BMB and fat aspirate, but they have elected to go with the watch and wait approach. No decisions for at least 3 months. This wait is really causing anxiety. I am also a smolderer without symptoms. The DX was made due to finding I carry a germline gene that is linked to amyloidosis and we tested just to make sure I “didn’t” have it. Trying to educate myself now.

Welcome to Connect, @jilljohnson61401
I think the watch and wait approach causes anxiety for many. It feels like doing nothing. In actual fact, your medical team is not inactive, but rather actively monitoring you. I prefer the term “active surveillance” rather than “no effort”.

Here’s how the National Cancer Institute defines active surveillance: “Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. Watchful waiting is sometimes used in conditions that progress slowly. It is also used when the risks of treatment are greater than the possible benefits. During watchful waiting, patients may be given certain tests and exams. It is a type of expectant management.”

Good for you for educating yourself. Please ask questions. We’ve got an experienced and knowledgeable group here to share with.

I’m bringing @jan52241 @debdeb @user_ch1df4426 @gaetanche and @tmousetis into the discussion.

Jill, is your next appointment in 3 months?

Yes in three months. I will get my blood drawn in Illinois and sent to Mayo. My Dr will call to discuss. I usually email him questions about a week before so he can address them during the call. Reading lots and asking questions so I can put my list together. I was just feeling good about my SMM and thinking “hey, this may never progress” and then get a Dx of Al Amy. Starting the whole “process of info” all over again. Such a roller coaster

BTW…I love the “active surveillance” perspective.

Jill, you sound very organized. Have you read this discussion thread about “the binder”? http://mayocl.in/2sNipEf Members offer how they got organized when facing a new diagnosis.

I’m also tagging @caretothepeople. We haven’t heard from her for a while, but she always seems to find great resources for preparing questions.
Jill, it sounds like you have a great doctor. I like that s/he will review your questions in advance of your appointment.

Jill6, The first bit of time after such a DX is rough. There are many frightening aspects, and not much to relieve the worry. That is why boards like this exist. It is a place where you can raise issues, complain, whatever, and everyone else must either answer in a supportive way or keep their mouths shut. I go through this now with all my cancers and disorders (prostate, bladder, stomach, esophageal, brain cortex, larynx, heart, lung, kidneys, liver, spleen, joints, thyroid, edema, skin, eyes, etc., etc.). I have a natural fear of people getting bored of my complaints and questions, but you folks who don’t want to read my crap, they can skip to the next. Even go to @colleenyoung‘s posts, which are much more informative and supportive than anything I can say. But remember, we are all in this together for the rest of our lives. By the side, probably the best book available is “Amyloidosis – Care and Treatment” by Morie Gertz and the staff at Mayo Rochester, and other folks. And the Grand Rounds Videos from Mayo, especially Martha Grogan and Dr. Gertz, and Dr. Comenzo of Sloan Kettering, are terrific.
My wife was told, in November of 1989, at about 10:00 p.m., that I would probably not live through the night. And she has been told the same thing on about 10 other occasions. So take that, Amy…. and CanCan……and Diablo….and MuMi…

Thanks for the reminder about videos, @oldkarl! There’s a video with Martha Grogan, MD, and hematologist Prashant Kapoor, MD, right here on Connect. Jill, please see:

Video Q&A Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

Thank you so much for your words of understanding and support. I tend to keep my concerns to myself, because although people ask me how I am, they really don’t want to take too much time to have to hear about it. 🙂 I am scared, nervous and positive and optimistic at the same time. Such a mixed bag of emotions with diseases like these. Be well and again thank you for your reply.

Thanks for the resource link! I am going to be all over this. It really was the only way to come to terms with my smoldering myeloma. At first everything scared me, but as I got deeper and deeper into the journal literature, I was able to get a feeling of comfort that all is treatable. It is not incurable, it is chronic. Perspective, it is all about perspective.

Hi, Jill and Board. Back again Not much has changed with me. Except that I have discovered a bunch of new stuff about Amy. The bunch of folks in my blood kindred who seem to have some form of Amy is now around 17. Thinking now it may be some form of Wild Type. Since several of us have cerebellar cortex deposits, it seems to be close to Finnish or Icelandic, Cystatin-C or Gelsolin. Since we know our DNA shows this area, it makes sense. My Kappa Light Chain value has dropped a little, but is still 50% over Ref value. Same with proteinuria. Anyway, every day I work on my record a little. https://bit.Ly/1w7j4j8 in Amyloidosis. I have 5 pros telling we what to take and to eat and to do for my diabetes. Each of them tells me something different to do about insulin and food. If I took the exact insulin which the want me to take, it would cost me about $10,000 per month since I am getting very close to the donut hole. So one by one, I am just dropping various kinds of medicines. It is all I can do.

@colleenyoung , This is for you, and for many others up the Mayo Ladder, right through Dr. Morey Gertz and higher. In most of the world there are places where the more technically specialized and advanced dX’s and treatments are simply not available. Yet Mayo has advertised it will work with local medicos to make these available wherever possible. The problem I have is finding local docx and labs who WILL gladly work with Mayo. I spent four months at Mayo-AZ last year before I even had an appointment with a haematologist (Mayo’s fault, frankly) and even then all the outcomes were extremely non-sensical. I should have gone to Rochester, and I know it. I am trying to put together the wherewithal to make that trip this year, but it looks like it will not happen, and I do not expect to live another year.What I need is some help finding a system in Western Oregon that WILL work with Mayo-MN. Even the labs will not work with Mayo-AZ. For instance, Mayo-MN said last year that they can not do more typing of my AL without further samples work. OK. But the local labs here can not do the typing because they do not have the “Atom Force Electronic Microscope” required, or even the equipment. So they are not willing to send samples to MN. That would take away their whips to force the legislature to give them more money for expenses, which they actually use only to pay their administrators more outrageous salaries. Anyway, put in some system where I can go to and find personnel and labs who can and will work with Mayo-MN, so I do not have to make another trip of 6,000 miles to say “hello”. PLEASE