Hi Marlene, couple questions.
Are you aware of any papers which have been published using the high dose Cytoxin protocol?
Also, I'm curious what your husbands FE level was before he started chelation therapy. I'm told my iron levels are close to needing treatment but were not there yet, at the last check in December.
Thank you, Dena
DX Heavy Chain Amyloidosis (AMY)kidneys June 2010 (no kidney damage), velcade dex Sept-Dec 2010, Auto-SCT March 2011, remission from AMY June 2011. AA since end June 2011 with transfusion dependancy. AA was likely caused by a lengthy B19 parvovirus infection from end June 2011-end Nov 2011. Horse ATG is current planned treatment likely in February.
Originally Posted by Marlene
I suggest you get a consult with Dr. Robert Brodsky at Hopkins for the Cytoxan protocol. He's your best bet to get the latest stats on the treatment and can answer all your questions. Search on high dose cytoxan and you'll find some post on the treatment. HiCy has better outcomes when it is the first line treatment for AA. The outcomes are lessened when it is used after ATG has failed.
The best advice I can give you at this point is to explore all your options and then go with the one you are most comfortable with. So many things come into play when deciding on a course of treatment. And it is important to be treated by a doctor at hospital with experience with AA.
You will find that everyone has a different journey no matter which treatment they decide upon. And no one can predict how you will react or what your personal outcome will be.