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Jun 7, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

So Pauline and Mtownsend from Delaware….Delaware here also…getting treated at Chrisitiana for AL…living in Bear….send me private email would be interested in your stories if you would like…jebbecaz@yahoo.com

Jun 4, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

2nd question…great seminar so far..wonderful job….+ 15 months SCT…severe neuropathy here NEOD?? how to get it…seems very limited availability…told trials full from Univesrity of Penn

Jun 4, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

dx AL Oct 2013
ASCT Dec 5 , 2013
Neuropathy and proteinuria main effects ( I also have bilateral Brachial plexus neuropathy)
Kidneys still functioning ok
Blood numbers and chem numbers in acceptable ranges
FLC went to normal with normal ratio 6 months after ASCT

Last blood work Lambda was up out of normal very slightly 28.2 (26.3 is high end of normal)..
Kappa fine at 14.3
Ratio fine at .51
No other sign of disease progression
Question:
Not worried at slight bump yet…but when would I need to be concerned about higher FLC…was around 100 I believe at diagnosis