Thursday, October 11, 2012

April 22, 2010 - Get some help, but from where?

I went with Mom to her nephrologist appointment during the week of April 19, 2010. But rather than try to recall everything that happened that week, fortunately for me I was able to retrieve the note I sent to the online Yahoo support group. Here it is, in its entirety, other than removing some names and noting a mistake I made. The first five paragraphs are basically covering what I've already written about in the blog, with a few additional details I had forgotten about.

=====Note to amyloidosis online support group. April 22, 2010=====

Greetings. I joined the group in March and I'm looking for some guidance on how to proceed with my mother's diagnosis situation. I was at the Dallas support group meeting in March, but my mother was not. I tried to be succinct with the history below, but I see I was unsuccessful. Oh well, amyloidosis is complicated.

My mother is 68, and for the last 6 to 12 months she has been seeing a nephrologist to determine the cause of excess protein in her urine (proteinuria). I don't know the extent of those tests, other than at least three 24-hour urine samples were analyzed. Eventually a kidney biopsy was performed in late December 2009, and part of the diagnosis was amyloidosis, with this comment in the biopsy report: "There is Lambda greater than Kappa staining but not significant enough to definitively state that this is AL amyloidosis. The section stained for AA amyloid is negative." There was also this sentence: "Congo Red and Thioflavin T stains for amyloid are positive."

Her only other notable medical symptoms that I am aware of now are shortness of breath with minimal exertion (possibly due to anemia, as she has experienced that before), and she bruises very easily, which started maybe six months ago but is getting better after some recent medication changes.

After the kidney biopsy, the nephrologist referred her to her oncologist, who is also a hematologist. She (nephrologist) also suggested getting an EKG [should have been "echocardiogram"]. I went with her to the oncologist appointment in March. He does treat Amy patients in his practice. He said the EKG [echocardiogram] looked fine for her age, he wasn't seeing what he would expect to see in her blood if she had primary Amy, but he suggested a bone marrow biopsy and some more blood work. So Mom got a bone marrow biopsy and then went to Europe for two weeks with her "gentleman caller," and fortunately she got home before the recent volcano activity. [Remember that volcano eruption in Iceland that disrupted air travel around Europe in 2010?]

In early April we went back to the oncologist. He said the bone marrow biopsy looked fine, and the blood work still showed no indication of amyloidosis. He had already talked to the pathologist who analyzed the kidney tissue, and the pathologist reiterated that he couldn't definitively state it was primary Amy. The pathologist was going to talk to some researchers at Duke who were looking into this type of thing and get back to the oncologist. The oncologist said he would also try to contact Dr. S about it, since Dr. S has been doing amyloidosis research for years and mom's oncologist knows him. (I believe Dr. M, who was at the Dallas meeting, worked under Dr. S for awhile.) The oncologist said this would likely be a team effort among all of her doctors, and he also mentioned the possibility of going to Mayo since they have the expertise and experience. He stressed that he didn't want to rush into any aggressive treatments until he understands what is being treated and what the expected outcome is. (Do no harm.) He asked us to give him a little time to talk to some other folks and figure out where to go from here.

::: New stuff below here :::

So this week I went with mom to her nephrologist appointment. The nephrologist had spoken to the oncologist, and it sounds like the oncologist has put the ball in the nephrologist's court, at least for now. I don't mean that negatively, that's just a convenient way to put it. It does make sense to me because right now it doesn't appear to be a systemic issue, but perhaps an issue localized in the kidneys. The nephrologist said she was going to talk to the pathologist about some further analysis of the original kidney biopsy tissue, or perhaps doing another kidney biopsy. She also mentioned getting Mayo clinic involved, which mom again said would not be a problem. So the nephrologist said to give her a little time to talk to some other folks and figure out where to go from here. The next day she called mom and said she went to med school with a doctor who is at Mayo in Jacksonville (Dr. R), and she had spoken with him and found out amyloidosis is an area of research for him. We have his office phone number.

So that's where we are right now. She obviously needs to get to either Mayo or Boston, and her doctors are supportive of that. I guess I'm looking for input on Mayo in Rochester vs. Scottsdale vs. Jacksonville. I don't want to choose Jacksonville solely because her nephrologist knows someone there, although that could be a benefit at some point. Distance from the Dallas area is approximately the same to all three, so that's not a factor. Should we contact one of the Mayo clinics, give them the history, and see which one they suggest she go to? Does it even matter at this point since she would just be going for an evaluation, not a treatment plan?

Any input would be appreciated, especially if anyone has a guess as to how this diagnosis may pan out (primary, secondary, familial, localized?). Feel free to reply to the group or email me directly at



So that's a pretty good snapshot of where my mind was at the time. Next, we'll see what kind of response I got.

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