Patient discussion about amyloidosis

!!! The questions and answers on this page are written by patients and are not reviewed by health professionals.

Q. How fast can primary amyloidosis spread? And what is the average survival rate for this disease?

A1Your best bet for one-stop shopping for amyloidosis information on the net is http://www.amyloidosis.org. There is also a Yahoo group named amyloidosis and also a mailing list named amyloid hosted by the Association of Cancer Online Resources. The amyloid list has around 500 subscribers, amyloidosis Yahoo group has maybe half that many. Face-to-face support for patients and caregivers is also available in most large metropolitan areas two or three times a year. See http://www.amyloidosissupportgroups.com for details.

To join the amyloid list, see http://www.acor.org/amyloid.html
A2As recently as 1994, a diagnosis of amyloidosis was a death sentence; average life remaining after diagnosis, 13 months. Now there is hope--not certainty of a long life, but 25% to 60%. depending on individual circumstances. I was diagnosed 2/99, treated 6/99, recovered completely, relapsed 11/03, and am still kicking.

Q. Has anyone out there taken the new drug Velcade??????

I've just started a JNJ Valcade trial and wonder if anyone out there has any experience this chemo treatment.
A1for a year and 2 months now. she is in pain but still alive and functioning.
A2Wow! How long has your Mom been taking Velcade? And how bad is her neuropathy?
A3my mother has Multiple Myeloma. she tried Thalimide so and it worked for 18 months. Velcade had just been approved and we felt there must be a guardian angel watching my mom because it worked wonders for 2 years. her side effects were only constipation and neuropathy. her cell count went up and she is still taking it.
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