Current diagnosis is Amyloidosis and multiple myeloma

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.

@jilljohnson61401 Are you still on? I am still around, but still impatiently waiting and watching. Mayo, B&W and the other centers make a big deal out of getting the diagnosis as quickly as possible to fill out the treatment windows. Then the (particularly) local docs take their sweet time about doing the testing that will be required. I do not buy that practice for a moment. But in the meantime, there is more that can be done. I have taken the Table 6-1 from of the MA Gertz book, "Amyloidosis - Diagnosis and Treatment", and adapted and filled it out in my own case, including my own stuff. And I have added the ALNYLAM Pharmaceuticals "Red Flag Warnings for hATTR", and a few other matters I have picked up from various sources. You could do the same, and it is time consuming and educational. But there is a possibility here. I am willing to make this available to you and anyone else through Dropbox.com as a PDF file, if you want it. I have cut out much of the too-personal stuff. And one of the group leaders must say it is all right to do that before I will go ahead. I think it would be very educational for any form of Amy, and you can adapt everything to your own needs. It is a lot of detail, but it is available if some leader gives the word. Doing it this way uses less board room and protects from viruses. Leaders?

Hello @oldkarl,

We do not prohibit members from exchanging information, we just ask that you do it via the private message function. If you, or any other member, would like to share the materials you speak of, we would just encourage you to share how to contact each other and your contact information by private message. This is for member protection of private information from spammers and unwanted solicitations from outside sources.

Dr. Gertz is an extremely highly regarded Mayo Clinic hematologist and considered a pioneer in a lot of areas. I am sure his book has fantastic information!

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.