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Breathe….
George received a notification today from Dr. Loren’s office asking him to confirm his upcoming appointment on Monday, the 21st of November. Wait, what? His appointment is on the 23rd! So we logged into the MyPenn account and saw that his appointment had been changed to the 21st (thanks for the heads up, yo) and…
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Phone Consult with the Doc
George’s doctor called this morning to discuss the drop in his chimerism numbers. She said she was very surprised to see it as well. She said the drop poses two concerns: Dr. Loren has already reached out to George’s bone marrow donor to ask for another collection of marrow cells, which she said takes at…
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I’m sorry to report…
George got the results back from the chimerism test he had done last Wednesday. We expected to see his donor percentages go up since he had been tapering off his tacrolimus. So we were stunned to see that two of the three values they check had dropped and dropped significantly. His CD3 % actually went…
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I’m happy to report….
2) At the visit with Dr. Loren two weeks ago, George was told he only had to do his magnesium infusion every other day, which was great! Yesterday, he was told he can stop all together! No more infusions! 3) After reducing the tacrolimus a bit, George’s chimerism numbers came up! Since then, he has…
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Little Pink Pills
Ok, so maybe they are more like peach or salmon colored. They are called gilteritinib (Xospata) and they are used to as a targeted therapy against the FLT3 mutation in leukemia patients. I talked a little about FLT3 in my previous post, but as a refresher, people who have AML with certain FLT3 mutations often have aggressive…
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One Pink Tennis Ball
On Tuesday of this week, George had his 100 day post-transplant bone marrow biopsy (even though he was only 95 days post-transplant). Everything went well and when he was wheeled back into the recovery room, he was OUT. He slept until it was time to leave. No graham crackers and juice for this guy! Before…
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You Can Breathe Now!
George had an appointment with Dr. Loren yesterday and we left feeling encouraged again! Our first worry was the drop in George’s chimerism percentages. She told us that it was possibly due to the valgocylovir he was taking to treat the CMV. Good news – no CMV had been detected for the past two weeks,…
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Day +80
I’ve just spent the last 30 minutes looking for dinner recipes on Pinterest that don’t contain lemon, cream, sugar or tomato sauce because all those things trigger the funky taste in George’s mouth. Do you know what it’s like to be a Greek and not be able to cook with lemon or tomatoes?? OY! And,…
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Day +71
George saw Jackie, the bone marrow transplant guru, on Tuesday, Sept. 13. She said everything was looking good, but really emphasized the importance of eating and getting the proper amount of calories and protein to aid in his recovery. She said in the next coming weeks, the need for proper nutrition will increase because he…
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Day +60
Wow. It has been 60 days since George’s bone marrow transplant. So far, we have just been chugging along. George is working full time from his home office, getting his magnesium transfusions every day, home infusion team comes twice a week to draw labs, I’m making sure he eats even though he doesn’t want to.…
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Diagnosis: Acute Myeloid Leukemia (AML). A Journey 