All the news that's fit to print, or everything you ever wanted to know about Margies leukemia and upcoming bone marrow transplant.

Ok, the observant of you likely noticed that the side bar over there> contains a bunch of links to information about
this "mini" transplant. Well, it aint so itsy-bitsy, but it's a step toward mom tellin' leukemia who's boss: Her, that's who!

Now, I can't take one ounce of credit for all of the factoids, information, links and intellectual observations on this information. I must let you know that my tireless, enthusiastic, willing and down right more-than-happy-to-do-this sister in law, Susie has spent hours and hours researching, compiling, faxing, mailing, phone-calling and digging on this subject. So, I'm a mere messenger, she deserves the kudos.

So, I'll begin by letting you know what's a comin' for mom:
__________________________________________________________________________________________________________________________

Acute myeloid leukemia (AML) is a cancer of the bone marrow and blood characterized by the rapid, uncontrolled growth of immature white blood cells known as myelocytes. The disease is more common in adults than in children; average age at diagnosis is more than 65 years.

The following is quoted from Dr. Frederick Appelbaum of the Fred Hutchinson center in Seattle. It's an excellent explanation
of how our blood system works and what happens when something goes wrong, as in leukemia:

"In our peripheral blood we have red cells, white cells and platelets, red cells that carry oxygen from the lungs to organs, white cells that fight infection, and platelets that keep us from bleeding. These cells are very short lived, lasting several months for red cells, several days for platelets and sometimes several hours for white cells, and so they have to continuously be replenished. That job of making new blood cells occurs in the bone marrow. The bone marrow stem cells have the responsibility for dividing and maturing. So they start out as baby cells and then they have to become more mature cells and become adult cells as they go into the peripheral blood, over the course of days to weeks."

"In acute leukemia, two things happen. Once thing that happens is that in one of these stem cells, a genetic event occurs. And by "genetic" we mean a mutation that you're not born with, but a mutation that comes about because the DNA either makes a mistake or gets damaged, that causes a cell to no longer be capable of maturing. So its ability to grow up and go from a teenager to an adult is inhibited. A second mutation causes the cells to reproduce more rapidly. This gives rise to cells that we call blasts, very young blood cells that aren't mature and therefore can't function, but grow abnormally fast and replace the normal bone marrow."

"This appears to occur in a single cell, so we call the disease clonal. That single cell and all of its children, or progeny, take over the bone marrow and cause the bone marrow to no longer produce its normal cells. Because the bone marrow is no longer producing its normal cells, you get the symptoms of leukemia, which include a lack of red cells, and so people become anemic and fatigued; a lack of white cells, and so 30% to 40% of patients will present with very low white counts and infection; and lack of platelets, and so at least a third of patients will have bleeding at the time of diagnosis. These are the major threats to patients with acute leukemia, that is, infection and bleeding. If we don't do anything, the disease unfortunately is often rapidly fatal, within one to two months. But with newer therapies patients can frequently enter complete remissions and often be cured."

So, this leads us to:

"MINI Transplant"
Fairly recently, the "mini transplant" option was developed (by Dr. Rainier Storb of Hutchinson in Seattle) This is like a conventional transplant exept that low-dose chemotherapy and radiation is used, rather than high doses, before transplanting
stem cells. This type of transplant is effective in some cases, without all the side effects of a conventional transplant.

Step 1: Planning
The first step is planning ahead. During this step you will be making plans for your stay in Seattle (moving there temporarily)
making financial arrangements and deciding who will be your primary caregiver.

Step 2: First visit
The next step is your fist visit with us, which includes meeting the members of your medical team, undergoing a medical evaluation, ( this goes on for two weeks) having several conferences and settling into your temporary home in Seattle.

Step 3: Conditioning
During the conditioning stage, you will receive conditioning therapy to prepare for the transplant. Conditioning is given before the actual transplant. This prepares your bone marrow to receive the transplant. Traditionally, this is either high-dose
chemotherapy alone or in combination with radiation therapy. In a mini transplant, we use lower-dose medication and radiation.
You will be given medication to prevent and relieve symptoms caused by the conditioning therapy. These include a sore mouth (oral mucositis), and you weill want to make sure you rinse your mouth frequently to relieve the discomfort. The conditioning does cause hair loss. Other possible side effects are nausea, vomiting, diarrhea and fever. You will want to make sure to balance rest and activity to help maintain your energy level.
The conditioning may be done entierely as an inpatient, entirely as outpatient or some combination of the two.

Step 4: Transplant
During the transplant, you will receive an infusion of stem cells through a central line. This infusion is usually a brief and uncomplicated procedure, but it is a significant event. Many families choose to celebrate the transplant day as a special occasion.

Step 5: Waiting for engraftment
Engraftment means that the bone marrow or stem cells you received during the transplant are growing and beginning to produce new blood cells. Signs of engraftment usually are seen about 10 to 28 days after the transplant.
Often the first sign is a rising white blood cell count. Your blood cell counts will be moniitored to watch for this.
You will be very susceptible to infections during this time because of lack of white blood cells. You will receive transfusions of blood cells or platelets if needed to boost your counts.
You also will be monitored closely for any side effects or complications of the treatment. Possible complications include viral, bacterial, and fungal infections; pneumonia; veno-occlusive disease (VOD) of the liver and other organ failure. The risk of organ failure may be greater in patients who already have had intensive chemotherapy or radiation therapy or both before coming for a transplant.

Step 6: Recovery after engraftment
After your hospital stay, if you have one, you will continue to recover as an outpatient. You will need to live within 15 to 30 minutes driving distance of the hospital during this time. Your designated caregiveer will be caring for you once your are released from the hospital.

Step 7: Long term follow up
Once you leave SCCA and return home, you will be under the care of your doctor. You should report any new symptoms to your doctor and the SCCA staff. Patients generally return to SCCa one year after their transplant for an evaluation.

The donor:

The donor may be a family member (yay, Cathy!!) or her or she may be an unrelated donor whose tissue type closely matches yours.
After the week period that comprises of an extensive medical evaluation (as stated in step 1) as well as 3 days of evaluation for the donor, the procedures for the transplant proceeds as follows:
The bone marrow harvest is done in the operating room, whle the donor is asleep under anesthesia, on the day of the transplant. If your donor is a family member who comes with you to Seattle. The doctors collect bone marrow from the hip using large needles. The procedure takes about two hours. Most donors do not need to stay at the hospital overnight.

_________________________________________________________________________________________________________________________
So, this is likely more information than any of you expected to see and margie wants this site to be "uplifting" and that you can have "fun". (I googled leukemia, blood and transplants for jokes, but uh, sorry, nothing funny there)
So please don't forget to add comments, a thought for the day or any joke or funny anecdote you'd like to share. This is Margies site and I know she'll look forward to hearing from all of you.

Thanks and all my best,
Kathleen