ABOUT BLOOD CANCER
Every 3 minutes someone in the U.S. is diagnosed with a form of blood cancer.
For many patients, a blood stem cell or bone marrow transplant is their best chance for survival…….Learn more about blood cancer and how a transplant can cure it. We would love to answer your questions, work with you to raise awareness for the need for more donors and help you host a donor drive.
What is Blood Cancer?
Blood cancer is an umbrella term for malignancies of the blood, bone marrow or lymph nodes that affect normal blood cell production or function. As these diseased blood cells proliferate, they cause life-threatening damage to the immune and circulatory systems.
Source – www.DKMS.org
I think I registered, but I’m not sure. Should I do it again?
We ask that all potential registrants make sure they have NOT registered before either with Earl Young’s Team or any other organization. Registering twice can result in being listed on the registry twice.
If you are not sure, please call 1-800-MARROW2 (800-627-7692) OR DKMS at 212-209-6700 to check.
What is the National Marrow Donor Program (NMDP)?
Every person registered through Earl Young’s Team is on the registry operated by the National Marrow Donor Program.
Can I register for a specific person?
No. When you register with DKMS, you are added to the national registry where any patient searching for a donor can potentially match with you. Registering is a serious commitment that requires you to be willing to donate to any patient in need. If you only want to see if you can donate to a particular person, you must be tested privately through the patient’s transplant doctor.
What happens after I register?
After you complete your registration at a drive or online, DKMS inputs your information into a secure donor database and sends your swabs to a laboratory for HLA (human leukocyte antigen) typing. HLAs are protein markers on your cells that are used in matching patients and donors. Once your HLA typing is complete, DKMS lists you anonymously by donor number and HLA type, on the Be The Match Registry® operated by the National Marrow Donor Program. Then, you will receive a letter from DKMS letting you know you are officially listed and available to doctors who are searching the registry to find matches for their patients.
I registered a long time ago. Do I need to re-swab to stay registered?
No, once you’ve registered and receive confirmation, you’re all set. Once registered, you will remain on the registry until age 61, unless you ask to be removed earlier.
I’m over 55, why can’t I register?
The age limit is not meant to discriminate. Medical guidelines have been established to protect the safety of the donor and provide the best possible treatment to the patient. Additionally, research shows that cells from younger donors lead to more successful outcomes for patients.
I am under 18, why can’t I register? Can’t my parents sign the consent for me?
18 is the age of legal consent in the U.S. for voluntary medical procedures like bone marrow donation. A guardian or parent cannot provide consent in these instances.
What are the chances I’ll get called to donate?
You could be called as a potential match within weeks of registering. Or, perhaps it will take years. There is a chance that you may never be called, but there is also the chance that, if you do get called, you are the ONLY one who can save that patient’s life.
Is donating marrow the same as donating blood?
No. When you register with DKMS, you are making yourself available as a potential marrow donor for a patient in need of transplant. If you do match with a patient, you will be asked to donate marrow or blood stem cells in procedures that differ from donating blood. You can remain a regular blood donor after registering as a bone marrow donor, however if you do match with a patient, we ask that you don’t give blood for a month prior to donation.
What is the difference between “bone marrow” and “blood stem cells?”
When you register, you have the potential of donating either bone marrow or blood stem cells, depending on the needs of the patient. Bone marrow is the spongy tissue inside your bones that produces blood stem cells, the cells in your body that produce red and white blood cells, as well as platelets. These blood stem cells also exist in your bloodstream, where they are called peripheral blood stem cells (PBSC). There are different procedures for donating marrow and blood stem cells. Most donors are asked to donate stem cells from the blood stream.
What are the two ways to donate?
You may be asked to donate via peripheral blood stem cell (PBSC) collection or bone marrow donation. The patient’s doctor chooses the method that promises the best outcome for the patient, that’s why we ask that all registrants be comfortable moving forward with either method.
Peripheral Blood Stem Cell (PBSC) Donation
This is the donation method used in 80% of cases. PBSC donation is a non-surgical, outpatient procedure that collects blood stem cells via the bloodstream. During the procedure, your blood is drawn through one arm and passed through a machine that filters out the blood stem cells. The remaining blood is returned to you through your other arm. To increase your blood stem cells prior to donation, you will receive daily injections of a synthetic protein called filgrastim on the four days leading up to and on the morning of the procedure. The actual donation can take from 4-8 hours over the course of 1-2 days.
Bone Marrow Donation
This is the preferred donation method in around 20% of cases, generally when the patient is a young child. This is a procedure performed under anesthesia. Marrow cells are collected from the back of the pelvic bone using a surgical syringe.
Does donating hurt?
Both donation procedures will result in some level of discomfort, but most donors report that any pain experienced is easily eclipsed by the positive feelings of knowing they are possibly saving a life.
Possible Side Effects & Recovery of PBSC
While taking filgrastim, you may experience flu-like symptoms such as headaches, bone and muscle aches and fatigue. Most side effects should subside within 48 hours of donating. Your stem cells replenish within 1 week. DKMS checks in with you regularly.
Possible Side Effects & Recovery of Bone Marrow Collection
You may experience some pain, bruising and stiffness for up to two weeks after donation. Within a week of donating, you should be able to return to work, school and many regular activities. Your marrow will completely replenish itself within 3-6 weeks.
We check up with you regularly after donation to make sure you are recovering properly. If you’re not, we’ll arrange and pay for any follow-up care.
Can I choose the donation method?
The donation method is selected by the patient’s doctor based on which they believe is best for the patient. That’s why we ask that you be comfortable with the prospect of peripheral blood stem cell collection and bone marrow donation. If you become a match for a patient and are not willing to donate through one of these methods, please notify your coordinator immediately.
Is bone marrow taken from my spine?
No. The marrow is extracted from the back of your pelvic bone using a special syringe.
Will I permanently lose my stem cells?
For either donation procedure, the amount of stem cells collected is only a fraction of your body’s total. Your donation does not weaken your immune system and the cells will naturally replenish themselves within a few weeks.
How are patients matched with donors?
At a donor drive or online, you swab your cheeks and provide contact details, your sample is sent to a lab for typing. Your contact and typing details are added anonymously (using a unique ID code number) to the donor pool. Once you are added to the database, doctors can search and find (we hope) matching donors for patients in need.
What is human leukocyte antigen (HLA) typing?
Human leukocyte antigen (HLA) typing is a DNA-based tissue test used to match patients and donors for bone marrow transplants. HLA are proteins, or “markers,” found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The closer the match the better the chances the patient’s body will accept the donated cells and allow them to grow and make new healthy cells.
What happens if I match a patient?
More testing will need to be done to determine if you are the best suitable match. This includes completing a health history questionnaire, providing blood samples and undergoing a physical exam. A DKMS representative will walk you through each step of the process and will be available to answer any questions you may have.
Do ancestry and ethnicity affect matching?
Heritage is a very important factor. Like hair and eye color, your HLA type is inherited, so the best matches generally happen between patients and donors who share the same ancestry.
Am I the only match?
It is possible for a patient to find multiple potential matches. However that information is known only to the patient’s doctor, not to us. The doctor will select the best donor based on how close the HLA match is, as well as the donor’s age, sex, size, health history, availability and other factors. If you are contacted as a potential match but not selected for donation, we will inform you. You will remain on the registry to be available for other searching patients.
What makes a good match?
Doctors generally look at 10 specific HLA markers to determine a match. Most require at least a 9 out of 10 match, but a 10 out of 10 is best. The closer the match, the better the chances that the patient’s immune system will recognize donated cells as its own and allow them to grow and make new healthy blood cells. We generally don’t find out exact patient-donor HLA match ratios.
How long do I have to make a decision?
When you register as a potential donor, you are making a serious commitment. You always have the right to change your mind. However, a late decision to NOT donate can be life-threatening to a patient, so we ask that you consider your decision seriously upon learning you are a potential match. Talk to family, talk to friends, talk to your DKMS coordinator, who can answer all your questions and even connect you with a past donor who can give you firsthand insights into donation.
What is a bone marrow transplant?
A bone marrow or blood stem cell transplant is a potentially life-saving treatment for patients fighting blood cancers like leukemia and lymphoma as well as other blood diseases like sickle cell. A transplant replaces the patient’s unhealthy blood stem cells with healthy ones from a donor like you. Prior to transplant, a patient undergoes high dosages of chemotherapy and possibly radiation therapy to destroy all the diseased cells in their body as well as their immune system so that it can’t attack the donated cells after transplant. During transplant, the donated cells are infused into the patient and move through the bloodstream into the bone marrow, where they begin to grow and produce new healthy blood cells in a process called engraftment.
What diseases do bone marrow transplants treat?
Bone marrow transplants can be the best or only treatment for patients fighting blood cancers like leukemia, lymphoma and myeloma as well as approximately 70 other conditions including sickle cell disease, severe aplastic anemia, immune system disorders and inherited metabolic disorders. Nearly 20,000 Americans need bone marrow transplants every year. (source: U.S. Dept. of Health & Human Services based on data from NMDP)