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Aug 5, 2017 · Current diagnosis is Amyloidosis and multiple myeloma in Blood Cancers & Disorders

Still here @oldkarl . Thanks for all of your work, but I have to tell you I get a bit leery opening files from folks I really don’t know. I work at a college and we have received so many trainings regarding viruses and files. I go to Mayo in Sept for more tests. I have a lung test at home in a couple of weeks. If my doctor isn’t overly worried, then I am not too worried. I take this disease seriously, but I do not take it as an automatic death sentence. I am in great health and great hands with my local care team and my Mayo care team, not to mention great support from my family and friends. I think I am one of the few lucky ones that was dx way before any deposition. I will definitely check out table 6 from Dr. Gertz’s book. Thanks again for the heads up.

Jun 24, 2017 · Current diagnosis is Amyloidosis and multiple myeloma in Blood Cancers & Disorders

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.

Jun 24, 2017 · Current diagnosis is Amyloidosis and multiple myeloma in Blood Cancers & Disorders

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.

Jun 24, 2017 · Current diagnosis is Amyloidosis and multiple myeloma in Blood Cancers & Disorders

BTW…I love the “active surveillance” perspective.

Jun 23, 2017 · Current diagnosis is Amyloidosis and multiple myeloma in Blood Cancers & Disorders

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

Jun 23, 2017 · Current diagnosis is Amyloidosis and multiple myeloma in Blood Cancers & Disorders

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.