[anitaParticipant]

Hi. I’m newly diagnosed ( 1 week ) and already being prepared for stem cell transplant. This is like a bad dream happening to someone else. I would like to chat with anyone else with similar. I’m only 46 which is apparently young.

I can’t believe how well I look and feel, and yet this thing is destroying my organs. I believe sct will be done within two months. I know I have it on my kidneys, spleen and heart. Not quite understanding light chain numbers but they  are lambda of 31.42 and monoclonal protein of 2.5g with bone marrow less than 5% plasma cells.

[blessthischickParticipant]

Hello Anita

I am the same age as you & had a trip down to the NAC last Oct. I was told I do not have Al Amy but that I may develop it so they check me really closely and so far things have been been fine. I am sorry you find yourself in this situation & I can imagine it must feel pretty scary. Just wanted to send you a link to an American awareness page on facebook I found which has been brilliant. There are other useful links within this site as well. PM me if you want me to contact a couple of ppl in the UK who may be able to help you.

https://www.facebook.com/groups/amyloidosisawareness/

Sending you lots of love & all my best wishes. Thinking of you.

Kay x

[johnandjunediamondParticipant]

hello anita,
amyloidosis is a very rare desease,and you may feel a little isolated in regard’s to
reply’s to your question’s.
there is a ( amyloidosis support group uk ) you could search but it is not as up to date
as it should be, but again down to the rarety of this desease.
however if you scroll part way down the page you will find a short video that helps to
explain how the amyloidosis affects the protien’s in you blood,
if caught early enough it can be stopped with chemo and most organ damage will repair
over time,
sadly june was diagnosed very late and died in nov last year when it attacked her skin
which is extremly rare.
love and best wishe’s.john.

[eveParticipant]

Hello John

Just popping in to say hello!!,I hope your are doing ok,or at least as well as can be expected,as you had a rough deal,and no time to adjust.Eve

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