AML Info

What is AML?
What causes AML and how is it treated?
Understanding the transplant procedure
Finding a matching donor (HLA Matching)
Side effects of the conditioning treatment
Graft vs Host Disease (GVHD)
Post-Transplant
Resources

What is AML? 
Acute myeloid leukemia (AML) is a cancer of the blood and bone marrow.  It starts with stem cells (immature cells) in the bone marrow which are supposed to become mature blood cells (red blood cells, white blood cells and platelets).  In AML, the stem cells make abnormal cells called myeloblasts (or blasts), which do not mature into healthy white blood cells.  These blasts multiply quickly and crowd out the good cells (white, red and platelets).  When this happens, infection, anemia and easy bleeding can occur.  AML starts in the bone marrow, but moves quickly into the blood.

AML is one of the four main types of leukemia and is the most common acute leukemia affecting adults.  The other types of leukemia are chronic myeloid leukemia, acute lymphocytic leukemia and chronic lymphocytic leukemia.  Acute leukemia comes on suddenly and progresses rapidly without treatment.  But with treatment it can be cured.  Chronic leukemia progresses more slowly, and in most cases, it can be treated but not cured. 

What causes AML and how is it treated?
AML starts with changes in a person’s DNA, beginning with a change to a single cell in the bone marrow.  Most DNA mutations related to AML occur during a person’s lifetime, rather than having been inherited.  There are some risk factors, including prior exposure to chemotherapy, radiation exposure, tobacco smoke and repeated contact with the chemical benzene.  But in most cases of AML, the cause is never known.

AML is a serious disease, but it is treatable.  Many people are cured and go on to live long healthy lives.   AML may be treated with:

  • Chemotherapy
  • Stem cell (or bone marrow) transplant
  • New drugs or approaches in clinical trials

Age is one of the main determinants of AML cure rate.  Younger adults (under age 60) have a higher cure rate than older adults.  Another important factor for achieving a cure is overall good health and the ability to tolerate intensive treatment.  And lastly, the subtype of AML and the biological features of the disease (the presence or absence of certain chromosomal and gene mutations) can affect the outcome.

Understanding the transplant procedure
My next phase of treatment for AML will be a stem cell transplant, which will be done at the Stanford Cancer Center in California (this is commonly referred to as a bone marrow transplant).  A transplant provides the best chance for a long term cure, and the success rates have improved significantly over the past 20 years.

The goal of the transplant is to transfuse healthy stem cells from a donor into a patient whose own unhealthy bone marrow has been treated to kill the abnormal cells.  Before the transplant, the patient receives high dose chemotherapy and/or radiation therapy to destroy the diseased leukemic cells and to suppress the immune system so that the donor’s cells will not be rejected.   I will receive high dose chemotherapy for six days, have a day off, and the next day receive the stem cell transplant.  The healthy transplanted cells will reestablish the blood cell production process in my bone marrow, a process called engraftment.  This will generally take two to three weeks.  Ultimately I will take on the blood type and immune system of my donor.

Stem cell transplant or bone marrow transplant?  I am having a  stem cell transplant, sometimes referred to as a hematopoietic stem cell transplant (HSCT) or peripheral blood stem cell transplant (PBSCT).  Hematopoietic stem cells are the blood cells that give rise to all the other blood cells.  Stem cells for transplant can come from the bone marrow, from the bloodstream, or from umbilical cord blood.  In the past, stem cells were usually harvested from the bone marrow, and the procedure was referred to as a bone marrow transplant (BMT).  The stem cells originate in the bone marrow, but they can be collected from the peripheral blood.  The term bone marrow transplant is still generally used today, even though now the most common source of stem cells for transplant is from the peripheral blood (or circulating blood).   Patients receiving stem cells from peripheral blood experience more rapid recovery from treatment than patients receiving stem cells from bone marrow; it is also a less invasive procedure for the donor.

Although it may sound like surgery, the transplant is actually done by infusing the stem cells into the patient’s vein, similar to a blood transfusion.  The stem cells are collected from the donor’s blood using a process called apheresis.  The blood of the donor is circulated through an apheresis machine, which separates the blood components, and collects the stem cells.  The rest of the blood is returned to the donor.

There are two main types of transplants, autologous and allogeneic.  An autologous transplant uses a patient’s own stem cells, and an allogeneic transplant uses those of another person.  There are some blood cancers where an autologous transplant can be used, but in my case an allogeneic transplant is needed – which means I needed to find a matching donor.

Finding a matching donor (HLA Matching)
Finding a donor match is related to tissue typing, not to blood types which are used to determine blood transfusion compatibility.  For a transplant, the donor’s tissue typing needs to match that of the recipient.  How closely they match plays a large part in how well the transplant will work.  The Human Leukocyte Antigen (HLA) is a protein, or marker, found on most cells in the body, and this is what is used to find the best match for a person.  The HLA type can be determined by the person’s DNA obtained from the blood, or via cells from inside the cheek.

The best match is referred to as a 10 out of 10, where 5 pairs of HLA antigens are the same in both the recipient and the donor.  Siblings are tested first, so my sister Chris was tested to determine if she would be a match for me, but unfortunately she is not.  There’s only a one in four chance that a sibling will be a match.  Stanford then put my name into the National Marrow Donor Program® (NMDP), managed by Be The Match®, the largest marrow registry in the world (bethematch.org).  I was thrilled to hear that they found a perfect donor for me, someone who is a 10 out of 10 match!  Not everyone is so lucky.

So to sum it up, I will be having an allogeneic stem cell transplant from a matched unrelated donor.

Side effects of the conditioning treatment
High dose chemotherapy or radiation (I will not be getting radiation) is given before the transplant to destroy the diseased leukemic cells, and to suppress the patient’s immune system so that the transplanted stem cells can begin producing healthy blood cells.  This intense treatment destroys the patient’s immune system, so the body is unable to fight infections from bacteria, fungi or viruses.  Side effects can include mouth sores, diarrhea, nausea and vomiting, loss of hair, and organ toxicity.  Antibiotics and other medications are given to the patient in anticipation of this, and patients remain mostly in isolation with limited visitors wearing masks.

Graft vs Host Disease (GVHD)
Graft vs Host Disease is a side effect that can occur in allogeneic transplant patients, even with a matched donor.  With GVHD, the transplanted donor immune cells attack the patient’s body.  Medications are given to the patient to help prevent GVHD, which can range from mild to severe.

Acute GVHD usually occurs within the first 100 days after the transplant.  Signs of this include skin rashes and blisters, gastrointestinal problems and jaundice.  Chronic GVHD usually occurs three months to a year or more after the transplant.  Older patients are more likely to develop GVHD than younger ones.

Post-Transplant
I will be in Stanford Hospital for about a month – one week prior to the transplant for the conditioning treatment, and about three weeks after the transplant to deal with the side effects from the chemotherapy, low blood counts, and for me to recover my strength and for my blood cells to rebuild sufficiently to provide me with some immunity.  When I am released from the hospital, I am required to live nearby with a caregiver (my lovely and dedicated Mom) for 90 days from the date of transplant, so we are renting a house in the area.  There will be frequent visits to the hospital during this time period so Stanford can monitor me closely and give me blood transfusions as needed.  It can take 6 to 12 months to recover to near normal blood cell levels and immune function, so risk of infection remains high for that period of time.  Fatigue is also a major side effect of a stem cell transplant.

I am dedicating 2014 solely to healing fully and completely from AML, and I feel optimistic and hopeful about my life post-treatment.

Resources
National Cancer Institute – information about Adult AML
Bone Marrow Transplantation and Peripheral Blood Stem Cell Transplantation
Be the Match – Join the bone marrow registry.  You could be someone’s cure.
Leukemia & Lymphoma Society – Acute Myeloid Leukemia

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