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Anyone Else With Extensive Amyloidosis In The Liver? Wondering What Treatments Will Be Possible.
Jim, I’m so sorry to hear you are not a candidate for transplants. I don’t yet know what type of amyloidosis I have - just know that it is is extensive in the liver. Thanks for your response and I… read more
Hi Everyone. Can You Folks Tell Me How You Handle Inappetence From AL Amyloidosis? My Dad Is Losing Weight And I'm Wondering How I Can Help.
First… can he eat? If he can, for me, anything I could eat. The amyloid makes all my food taste like crap but I just power through. I had a nutritionist tell me just put butter, sour cream, peanut… read more
How Do Beverages With Caffeine Affect Your Amyloidosis?
That picture is hysterical
Good News! We Have Secured The Date, Saturday April 20th, For An Amyloidosis Awareness In Philadelphia PA - Let Me Know If You Need Info
Registration on line
Working During Chemo?
I have AL and am going to start chemo soon. Wondering what to expect as far as working during treatment. I work from home on the computer, so not very physical, but my mind needs to be clear and I have to be able to stay awake. Any insights on chemo side effects?
Hi Ms. Eleanor, I can't answer, but I do wish you well.
Was Age Of Onset Pretty Consistent In Hattr (familial) Type ?
My Husband Has AL With An Enlarged Tongue Does That Mean The Amyloid Is In His Digestive Tract Or Is That Just A Symptom Of The Disease?
Well then most likely I would assume that is the reason for the enlarged tongue. A reason to continue with treatment. Use every tool available to fight!
Darzalex Fastoro.
Has anyone with Amyloidosis received more than 24 injections of Darazalex Fastpro?
I thought I read somewhere that there was a limit of 24.
Thanks for any and all replies.
Jim
I've Been Subscribed Jardiance Along With My Vyndaquel. Is Anyone Else Using This Drug, And Have You Seen Results?
I have been on Vyndamax and Jardiance for about a year - had an Ecco in April results show an improvement in flow rate. Seems to be slowing the progression of the disease.
Has Anyone Had Success With Acupuncture For Their Neuropathy?
I am having success. I do acupuncture, neuromed electrical therapy, cold laser therapy and infusions. I am getting feeling back where I had gone completely numb.
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