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Jun 8, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

As far as lichen amyloidosis, we could assist, but it isn’t something we have as a specialty clinic or strong web presence on.

Jun 8, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

Phase 2 is still putting patients on the waiting list.

Jun 8, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

Del 17 p is considered a high risk feature in myeloma. Only nine patients with AL amyloidosis (2%) were identified with a deletion (17p) in a recent retrospective study of 401 patients published by the Mayo Clinic Group. The nine patients with deletion 17p had the highest level of bone marrow plasma cell infiltration. No significant difference in overall survival for the high-risk FISH features could be documented, but the study was limited by very small numbers of high risk abnormalities. In the absence of hard data in AL amyloidosis, I would err on the side of considering del 17p as a high-risk feature. Usually bortezomib-based therapies are considered more effective in patients with del 17p.

Jun 8, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

A second SCT is a viable option, especially if the first SCT led to prolonged remission. Typically however, the impact of a second SCT is not as durable as the first. Candidacy for another SCT would have to be assessed. The pros and cons of the other non-SCT options, including bortezomib- based chemo regimens, particularly if not used previously, should be discussed with the physician in detail.

Jun 8, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

Abnormal plasma cell infiltration in the bone marrow can be patchy, and if the sample obtained is not representative of the true marrow picture, or has a low proportion of clonal plasma cells, the detection of plasma cells can be missed. Unfortunately, this degree of an increase in the involved free light chain with resultant abnormal K/L ratio is typically suggestive of progressive disease. It may just be early biochemical progression, but organ function would have to be assessed as well to find out if the increase in the free light chain has led to organ damage. Please discuss carefully with your physician about the various options that are available.

Jun 8, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

The mature and updated results of CAN2007, a phase 1/2 study of once- and twice-weekly single-agent bortezomib in relapsed AL amyloidosis by Donna Reece et al. were published in the journal Blood in 2014. Seventy patients were treated and single-agent bortezomib produced durable hematologic responses and promising long-term overall survival. This trial was registered at http://www.clinicaltrials.gov as #NCT00298766.

Jun 5, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

Just letting everybody know – answers are still coming your way. Thanks for your patience!

Jun 5, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

Anonymous: Relative to previous question about solid organ transplant and familial amyloidosis, concern is about wild type continued deposit and not recommended use of diflunisal because of kidney concerns.

Yes, wild type TTR can deposit on pre-existing deposits of amyloid related to TTR mutation. If someone has abnormal kidney function, diflunisal can make it worse.