Thread: My Dad's Story
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Old Sat Aug 16, 2008, 07:48 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Hi Debra,

John would get nauseated from Exjade also. How high is your Dad's FE level? You may want to either take a break from it for three weeks and start it up at a lower dose to see if that helps. Or, if he still has a central line in or a port, switch to desferral to see if he tolerates that better.

I hope they are monitoring his kidney and liver function very closely. John's kidneys did not like Exjade. It would cause a rise in his creatinine even at low doses.

You dad has been through a lot and it makes sense that his recovery will take longer. Continue with the "Deb Therapy" . With John, we focused on restoring overall health to strengthen him. We did a lot with nutrition and energy work like acupuncture, chiropractic. We have done and continue with some herbal support and therapeutic essential oils.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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