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Old Wed Feb 17, 2016, 04:17 PM
yumeleona23 yumeleona23 is offline
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!
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Old Wed Feb 17, 2016, 08:08 PM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
I haven't heard of the IV drip - I am currently doing monthly nebulizer after BMT - I do have a transplant friend who did an oral drug for a long time - which he describes as disgusting and he hated - until he recently switched to the nebulizer form - perhaps that is an option - albeit an unpleasant one - but better than the long drive. Contacting aids center sounds like a good idea too

Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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