116: Amanda Ferraro twice survived acute myeloid myeloma | bone marrow biopsy | stem cell transplant

In 2017, Amanda Ferraro found herself feeling tired all the time.  When the fatigue persisted, she went to the emergency room.  Doctors told her she had mononucleosis, a diagnosis that she thought made sense. 

 

Amanda lives in Manalapan, New Jersey.  She is a single mom, who works as an advocate for cancer patients.  

 

After being diagnosed with mono, the fatigue wouldn’t go away and she had bruises.  That’s when she sought additional medical attention, which included blood work.  The tests revealed the presence of blast cells, which got her doctor’s attention.  He then called for a bone marrow biopsy, which resulted in a diagnosis of acute myeloid leukemia. 

 

She was put on a chemotherapy regimen, which included cytarabine.  At one point, Amanda Ferraro was hospitalized for 33 days.  Her stress level was doubled because not only was she dealing with cancer and chemo, but at the time, her son was three years old and couldn’t understand his mom wasn’t at home.

 

Amanda eventually went into remission, but six months later, following a second bone marrow biopsy, the acute myeloid leukemia returned.  She learned she had the TP-53 gene, which had mutated, causing the relapse.  Before going on a second chemo regimen, Amanda’s doctor told her she has a ten percent chance to live, and before the second regimen began, he gave Amanda a week to get her affairs in order.  Because a second chemo regimen did not give her a good chance to survive, he said she would need a stem cell transplant.  That meant finding a donor, and miraculously, one was found. 

 

Amanda Ferraro said she had to go back on chemo before the transplant could be executed, but once it was, she almost instantly felt better. 

 

Although she has survived acute myeloid leukemia twice, Amanda still has to occasionally deal with the effects of the stem cell transplant.  One of those effects is Graft Versus Host Disease, also known as GVHD, in which the donor’s immune system attacks Amanda’s body, causing various flare-ups.  Amanda says a little bit of GVHD is actually a good thing because it shows the donor’s immune system is establishing its presence, but too much manifests itself in lots of bad ways.

 

GVHD can result in pain to Amanda’s bones and joints.  GVHD can also invade her mouth, with dry mouth and/or multiple sores.  GVHD also gets in her blood.  If she eats the wrong food, her stomach can swell so that she looks six weeks pregnant.   GVHD requires lots of monitoring and that means having conversations with the gastroenterologist, the oncologist, the dermatologist, the orthopedist, just making sure that the body can function and do what it is supposed to do on a daily basis. 

 

Amanda Ferraro still gets fatigued.  There will be some days in which she just stays in bed.  If she goes on a vigorous walk, she knows that for the next two to three days she will have to take it easy.  These are her bad days, which she accepts as being tied to cancer, GVHD, and re-learning how her body works.  There are also good days.  If her health was at 100 percent, pre-diagnosis, on the good days, Amanda says feels like 90 percent.

 

Despite any of the difficulties that come her way, Amanda counts her blessings, and is very happy to celebrate life with her son.

 

Additional Resources:

 

Leukemia & Lymphoma Society: https://www.lls.org