Last Wednesday, I went to Jewish Hospital with Mom and Dad to learn about bone marrow stem cell transplants. Dad will probably need to have one by the end of the year. I finally sat down and organized my notes from the appointment:
Notes from 6/9/2004 appointment at Jewish Hospital with Dr. Sigmund and Transplant Coordinator stand-in, Janie
MYELOFIBROSIS
It's hard to predict what can happen with Myelofibrosis patients. Dad could possibly get burned out bone marrow from too many transfusions...he could stay the same, getting no better or worse....it can lead to leukemia. Dad is considered "high risk". He has a lot of myelofibrosis - it looks like scar tissue under a microscope. If we wait too long, his bone marrow can't be repaired, so it's important to act within the next six months.
The only treatment that will "fix" the bone marrow is a transplant. Other treatments may stabilize the marrow, but will never improve its condition.
Dr. Sigmund has never seen Aranesp (the injection he is receiving to increase and maintain his hemoglobin count) work on Myelofibrosis, but it's a good place to start. It is safe and easy. They are going to give the Aranesp a couple of months (4 - 10 injections) to work.
Currently, Dad is on a half of a tank, so to speak. A person his age should have a hemoglobin count of 14.1 - 18.1. His count is roughly half of that.
Should the Aranesp not work, the next step is an Allogenic Stem Cell Transplant, where donor cells are transplanted into dad's blood.
DONORS
Donors need to be siblings. Not using a sibling donor is a substantial risk. There is a 1 in 4 chance that any one sibling will match. Donor does not need to have the same blood type. Dr. Sigmund recommends that we start with the four youngest and healthiest siblings.
The donation is an outpatient procedure. It is safe, not hard on the donor and the donor pays nothing. They collect the stem cells intravenously - either through the donor's arm or chest, if necessary. There is no health risk for the donor.
Note - I don't recall Dr. Sigmund or Janie mentioning this, but I've read that they insert a catheter in the donor and it stays there for about three days. The donor comes in, donates cells, goes home and then comes back on days two and three to donate some more. When all the donations are complete, the catheter is removed.
PROCEDURE
Donor will receive a hormone called GCSF (granulocyte colony stimulating factor), which causes a lot of stem cells to be released from bone marrow to the blood. (My research shows GCSF is given through an injection for about 3 days prior to the donation)
As the donor's blood is drawn, it is circulated through a machine which separates the cells, siphons off the stem cells, then returns the blood to the donor.
The donor's stem cells are stored and Dad will receive high-dose chemotherapy for two days, which rids his body of the bad marrow. Then they will infuse the donated stem cells through a catheter.
As Dad's body adjusts to the new cells, he will be given medications, blood transfusions (because initially, his body will not be able to produce blood cells), be monitored and will be kept active - walking the halls, etc.
It's a pretty long process. He'll be in the hospital for approximately a month. Months, perhaps years, of follow up visits at Jewish will ensue.
STEM CELL TRANSPLANT RISKS & OUTCOMES
The transplant is a relatively safe surgery. The chance of death within the first 6 months is less than 5%. It is less than 3% within the first year. Dr. Sigmund noted that Dad's good health is a real leg-up for him.
There is a 60 - 70% chance that the transplant will get rid of the Myelofibrosis.
NEW BONE MARROW SIDE EFFECTS
The new (donated) bone marrow is a new immune system for Dad. It's possible that the new cells will try to reject Dad. This is called Graft versus Host Disease (GVHD). GVHD is a potentially serious side effect of allogeneic transplant. In GVHD, the donor stem cells recognize that the recipient cells (your cells) are different and attack them. GVHD may be acute or chronic, and may affect the skin, liver, or gastrointestinal tract. Drugs are given to reduce the likelihood of GVHD and to treat it if it does occur.
CHEMOTHERAPY SIDE EFFECTS
-Chemo affects fast growing cells, such as hair follicles. Dad will lose his hair.
-He'll need very strong antibiotics to protect his body since he will be more vulnerable to infection.
-His digestive tract lining will be affected - he'll suffer from a tender/raw mouth, heartburn, nausea, vomiting.
INFORMATION GATHERING, BENEFITS, EVALUATIONS
Jewish Hospital will call Dad's insurance company to find out the benefits provided for Allogeneic Transplants. Mom will also call the insurance company, and then Jewish and Mom will compare notes to make sure they were told the same "story".
Jewish will find out if the insurance will pay for evaluations on Dad and his siblings.
In the meantime, we need to provide information about Dad's siblings - Name, SSN, insurance info, heath, etc.
It'll probably take 1-2 weeks to get the benefits straight.
They will type the blood of the four youngest/healthiest siblings. It will take about three weeks to get the typing results. If no one is a match in the first group, they will move on to the next four siblings.
Once a donor is identified, both the donor and Dad will be worked up to check heart, lungs and other major organs. They'll do a repeat bone marrow biopsy on Dad.
Notes from 6/9/2004 appointment at Jewish Hospital with Dr. Sigmund and Transplant Coordinator stand-in, Janie
MYELOFIBROSIS
It's hard to predict what can happen with Myelofibrosis patients. Dad could possibly get burned out bone marrow from too many transfusions...he could stay the same, getting no better or worse....it can lead to leukemia. Dad is considered "high risk". He has a lot of myelofibrosis - it looks like scar tissue under a microscope. If we wait too long, his bone marrow can't be repaired, so it's important to act within the next six months.
The only treatment that will "fix" the bone marrow is a transplant. Other treatments may stabilize the marrow, but will never improve its condition.
Dr. Sigmund has never seen Aranesp (the injection he is receiving to increase and maintain his hemoglobin count) work on Myelofibrosis, but it's a good place to start. It is safe and easy. They are going to give the Aranesp a couple of months (4 - 10 injections) to work.
Currently, Dad is on a half of a tank, so to speak. A person his age should have a hemoglobin count of 14.1 - 18.1. His count is roughly half of that.
Should the Aranesp not work, the next step is an Allogenic Stem Cell Transplant, where donor cells are transplanted into dad's blood.
DONORS
Donors need to be siblings. Not using a sibling donor is a substantial risk. There is a 1 in 4 chance that any one sibling will match. Donor does not need to have the same blood type. Dr. Sigmund recommends that we start with the four youngest and healthiest siblings.
The donation is an outpatient procedure. It is safe, not hard on the donor and the donor pays nothing. They collect the stem cells intravenously - either through the donor's arm or chest, if necessary. There is no health risk for the donor.
Note - I don't recall Dr. Sigmund or Janie mentioning this, but I've read that they insert a catheter in the donor and it stays there for about three days. The donor comes in, donates cells, goes home and then comes back on days two and three to donate some more. When all the donations are complete, the catheter is removed.
PROCEDURE
Donor will receive a hormone called GCSF (granulocyte colony stimulating factor), which causes a lot of stem cells to be released from bone marrow to the blood. (My research shows GCSF is given through an injection for about 3 days prior to the donation)
As the donor's blood is drawn, it is circulated through a machine which separates the cells, siphons off the stem cells, then returns the blood to the donor.
The donor's stem cells are stored and Dad will receive high-dose chemotherapy for two days, which rids his body of the bad marrow. Then they will infuse the donated stem cells through a catheter.
As Dad's body adjusts to the new cells, he will be given medications, blood transfusions (because initially, his body will not be able to produce blood cells), be monitored and will be kept active - walking the halls, etc.
It's a pretty long process. He'll be in the hospital for approximately a month. Months, perhaps years, of follow up visits at Jewish will ensue.
STEM CELL TRANSPLANT RISKS & OUTCOMES
The transplant is a relatively safe surgery. The chance of death within the first 6 months is less than 5%. It is less than 3% within the first year. Dr. Sigmund noted that Dad's good health is a real leg-up for him.
There is a 60 - 70% chance that the transplant will get rid of the Myelofibrosis.
NEW BONE MARROW SIDE EFFECTS
The new (donated) bone marrow is a new immune system for Dad. It's possible that the new cells will try to reject Dad. This is called Graft versus Host Disease (GVHD). GVHD is a potentially serious side effect of allogeneic transplant. In GVHD, the donor stem cells recognize that the recipient cells (your cells) are different and attack them. GVHD may be acute or chronic, and may affect the skin, liver, or gastrointestinal tract. Drugs are given to reduce the likelihood of GVHD and to treat it if it does occur.
CHEMOTHERAPY SIDE EFFECTS
-Chemo affects fast growing cells, such as hair follicles. Dad will lose his hair.
-He'll need very strong antibiotics to protect his body since he will be more vulnerable to infection.
-His digestive tract lining will be affected - he'll suffer from a tender/raw mouth, heartburn, nausea, vomiting.
INFORMATION GATHERING, BENEFITS, EVALUATIONS
Jewish Hospital will call Dad's insurance company to find out the benefits provided for Allogeneic Transplants. Mom will also call the insurance company, and then Jewish and Mom will compare notes to make sure they were told the same "story".
Jewish will find out if the insurance will pay for evaluations on Dad and his siblings.
In the meantime, we need to provide information about Dad's siblings - Name, SSN, insurance info, heath, etc.
It'll probably take 1-2 weeks to get the benefits straight.
They will type the blood of the four youngest/healthiest siblings. It will take about three weeks to get the typing results. If no one is a match in the first group, they will move on to the next four siblings.
Once a donor is identified, both the donor and Dad will be worked up to check heart, lungs and other major organs. They'll do a repeat bone marrow biopsy on Dad.
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