Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Friends,
I dont even want to come here with this, but I need your reassurances and your prayers. Today Jay and Alex went to the clinic thinking Jay would get his last ekg, xrays, etc and then have his port removed. Literally they were packed and ready to depart to the new home they just rented (and where Alex and I had just moved all their belongings from storage). Her new position with her organization starts this month in a new city. They had already attended their discharge class on Tuesday.
Today the results of the biopsy came in. Jay has 50% leukemia cells...and as of today blasts showing in his regular blood work. Its like being hit in the face with a baseball bat. We can't be more shocked. Really. We are numb. His transplant doctor was not encouraging. He doesnt recommend a third transplant. What? We have to do something!
Early next week we will meet again with oncologist. I feel we have to get Jay in some agressive trial if he will be accepted. Where I dont know. Any and all suggestions are welcome.
Please please pray with us.
--Tina
I dont even want to come here with this, but I need your reassurances and your prayers. Today Jay and Alex went to the clinic thinking Jay would get his last ekg, xrays, etc and then have his port removed. Literally they were packed and ready to depart to the new home they just rented (and where Alex and I had just moved all their belongings from storage). Her new position with her organization starts this month in a new city. They had already attended their discharge class on Tuesday.
Today the results of the biopsy came in. Jay has 50% leukemia cells...and as of today blasts showing in his regular blood work. Its like being hit in the face with a baseball bat. We can't be more shocked. Really. We are numb. His transplant doctor was not encouraging. He doesnt recommend a third transplant. What? We have to do something!
Early next week we will meet again with oncologist. I feel we have to get Jay in some agressive trial if he will be accepted. Where I dont know. Any and all suggestions are welcome.
Please please pray with us.
--Tina
I'm devastated for you and your beautiful family. I can't offer any medical advice but I'm offering a lot of decades of the rosary for Jay tonight. I will also go to the shrine of st Anthony tomorrow to light candles for Jay.
My prayers are always with you.
Planxty
All my love.
Ana
Ok, complete shock, but lets move forward.this doesn't see, fair at all.
I have no idea about geography, but one of my favorite, most aggressive physicians left the Temple Transplant Group and went to:
http://www.carolinashealthcare.org/levine-cancer-institute in SC
His name is Otymayo Fasan, MD. I call him Tayo. Please call him at this location if it is geographically reasonable. He is starting their program, but he is the one who reached across the ocean, literally and found a physician in Italy trying a new protocol for transplants. If it were not for the researchers getting me to remission and Tayo's dedication to people surviving this, I would not be writing this note today. It took many people collaborating and he was the master coordinator.
There are clinical trials in Philadelphia. MY transplant doc at Fox Chase/Temple is Patricia Kropf, 215-214-3100- she is a genious. There are huge changes coming to Fox Chase and I am told some new big wigs have joined the Fox Chase team (very recent), I don't even know if they are physically here yet. It was pretty hush, hush politically. I also see a research guy at Penn, whom I adore. His name is Alexander Perl 215-615-3138 , opt 7 - this man is a genious and will personally return calls, just talk to his secretary and she will get information and have him call to see if it makes sense to travel or if there is another location he could suggest.
If travel to Philly is recommended, no fear, I live just outside the city and would make arrangements for you to stay here.
Most important, DON'T EVER GIVE UP. Give no power to AML. I have added Jay to my novena with Padre Pio.
Blessings. Peace, love and hope and please let me know if you are reaching out to any of these folks, I will send out notes, as I feel comfortable with every one.
Hugs,
Andrea
Sending my love and prayers xxx
Nicole