View Single Post
  #1  
Old Wed Feb 17, 2016, 04:17 PM
yumeleona23 yumeleona23 is offline
Member
 
Join Date: Feb 2016
Location: Orlando, FL
Posts: 1
Pentamidine Inhalation in Orlando

Hi all. New to the forum. My mother is 9 months post transplant after a battle with AML. We started the fight in Orlando at FL Hospital and then transferred to MD Anderson in Houston. While the treatment and transplant went well there, she still has been battling CMV for about 6 months now. It's pretty rough, but because it has had some pretty low points, we brought her back to Orlando to be with family.

That said, MD Anderson suggested that we still stay with a cancer center instead of just going back to our old oncologist. So we've been commuting to Moffitt Cancer Center in Tampa. She's to the point where she gets her daily/weekly labs in Orlando and Moffitt will call and chime in with dosage adjustments based on numbers. But they insist that she come back once a month for the Pentamidine inhalation treatment for pneumonia. MD Anderson and FL Hospital have both said that they only do intravenous. We just can't find anyone in Orlando that does the nebulizer treatment and Moffitt doesn't want her to do the IV drip. So we drive 4 hours round trip just to do a 15 minute treatment.

Granted, we count our blessings of course, but the car ride takes its toll. Moffitt and FL Hospital don't have any suggestions as to an Orlando treatment. Does anyone have any suggestions? Can this be done at home with a nebulizer? Should I try reaching out to AIDS treatment centers? Any advice is welcome!
Reply With Quote