Contents
– I have a medicine in me for the other person that I have no right to refuse. – The procedure itself requires little from me, and it can save a patient with a blood cancer. – The decision to become a bone marrow donor changes the view on the meaning of everything that seems important on a daily basis. The words of the marrow donors testify to one thing – our mission is to give. Unfortunately, the number of people convinced of this is still insufficient …
Anyone can get sick
The data of the National Cancer Registry (NCR) are disturbing – only in the last three decades the incidence of hematological cancers has increased more than twice. Currently in Poland, about 2 thousand people suffer from blood cancers. people, and each year more than 15 thousand are diagnosed. new cases. [6] It is estimated that every 1 minutes another inhabitant of our country faces the words “this is a blood cancer”. Sometimes it is a small, and sometimes a large patient – blood cancer does not choose.
Experts emphasize that the sooner we detect a hematological disease, the greater the chances of success of the therapy. Unfortunately, nonspecific symptoms of blood and bone marrow diseases (fatigue, decreased immunity, weight loss, night sweats, fever) delay diagnosis.
What exactly are hematological cancers? It is a group of tumors that develop in the bone marrow and / or in the lymphatic system. Among them we distinguish: neoplasms of the hematopoietic system and neoplasms of the lymphatic system. The former are derived from stem cells or progenitor cells of the myeloid (myeloid) lineage, while the latter are derived from precursor cells or mature cells of the lymphoid (lymph) lineage.
Treatment of blood cancers is complex and depends on many factors such as the type, stage of the disease and the age of the patient. Most blood cancers are treated with pharmacology and / or radiotherapy, while a significant proportion of these cancers require hematopoietic stem cell transplantation, commonly known as bone marrow transplantation, to fully cure or achieve the best results. The latest and most revolutionary technology in hematology are CAR-T cells, genetically modified lymphocytes.
Looking for a needle in a haystack
There are two types of bone marrow transplantation: autologous (auto SCT), i.e. autotransplantation, and allogeneic (alloSCT). In the case of the former, the patient himself is the donor for himself. The procedure consists in taking the patient’s hematopoietic cells, then administering high doses of chemotherapy and / or radiotherapy to completely destroy the tumor, and finally giving the patient his own hematopoietic stem cells to restore the hematopoietic system.
In contrast, allogeneic transplantation (alloSCT) uses healthy donor’s hematopoietic stem cells to reconstruct the recipient’s bone marrow and peripheral blood cells. The donor can be either related or not related to the patient. Again, in preparation for transplantation, aggressive chemotherapy and, if necessary, radiotherapy are usually carried out in the so-called conditioning phase to destroy as many tumor cells as possible.
Are the chances of finding a “genetic twin” for a blood cancer patient high? Unfortunately, no – it’s like looking for a needle in a haystack. The probability is 1: 20, and in the case of a rare genotype – as much as 000 to several million. All thanks to the diversity of genes of the HLA (Human Leukocyte Antigen) system, giving as many as 1 billion combinations. What is HLA and why is it so important?
The HLA system is a system of genes that are located on the shorter arm of chromosome 6. There is a record of histocompatibility antigens, i.e. HLA antigens, which are responsible for the so-called immune tolerance. The main task of the HLA system is to recognize its own cells (tolerance of own cells and tissues). If the HLA system recognizes foreign cells, it triggers an immune response against them. Conversely, the recognition of cells by the HLA system as its own protects against the attack of its own lymphocytes and the rejection of hematopoietic cell transplantation in patients after transplantation. This is why the success of hematopoietic stem cell transplantation is most dependent on the donor and recipient compatibility regarding the HLA system.
There are many types of HLA antigens, but 10 of them are crucial for successful transplantation. Hence, the highest compliance is referred to as the 10/10 compliance. In exceptional circumstances, a Donor is considered who is compatible with Patient 9/10 or 8/10. Importantly – the blood group of the Donor and the Patient do not have to be the same – after transplantation with the donor’s stem cells, the Recipient takes over his blood group.
800 patients
According to statistics, each year in Poland about 800 patients are qualified for hematopoietic stem cell transplantation (in 2020 – 838 submitted to the waiting list). Only 25 percent. patients find a compatible donor to the family, and the remaining 75 percent. requires a bone marrow transplant from an unrelated donor. Unfortunately, at the moment every fifth Polish patient does not find his “genetic twin” … Newly registered potential donors may be a hope for these people.
The units involved in obtaining them are the Bone Marrow Donors Centers (ODS), operating on the basis of the permission of the Minister of Health in accordance with Art. 16a of the Act of July 1, 2005 on the collection, storage and transplantation of cells, tissues and organs (Journal of Laws No. 169, item 1411, as amended).
One of the dozen or so ODS operating in Poland, and at the same time the largest database of potential donors of hematopoietic stem cells and bone marrow, is the DKMS Foundation, established in 2008. Its role in the transplant procedure is to accompany the donor from the confirmation typing to donation of the transplant material, to 10 years after donation.
Currently, 1,7 million people are registered at the DKMS Foundation, of which over 9,5 thousand are registered. became actual donors and donated their cells to patients from all over the world.
How to join the donor base and give life to someone?
Are you wondering if you can become a Potential Donor of hematopoietic stem cells and bone marrow? Yes, as long as you are between 18 and 55 years old, you are in good physical shape, do not have chronic diseases and do not belong to any of the risk groups. Contraindications are some chronic, genetic, autoimmune and infectious diseases.
The very procedure of registration in the base of donors of bone marrow and stem cells is easy, fast and, importantly, safe even in times of a pandemic. You don’t have to leave your home – all you need to do is order the registration package on the DKMS Foundation website, which will be sent to the address provided within two days.
Both the ordering of the package and its return are free of charge. What will we find inside? Application form, three sticks for self-sampling on the inside of the cheek and a return envelope, on which we do not have to stick a stamp. The registration package should be sent back after a minimum of 3 days from taking the swab, when the sticks are dry and safe for people who come into contact with the envelope.
After completing the registration (approx. 2-3 months), the Foundation will send you a confirmation of your entry in the database and will transfer your anonymised data to the global database, the Polish registry of Poltransplant donors and international registries. Thanks to this, it is possible to quickly find a donor for a patient in need. Along with the registration confirmation, you will also receive a donor card, which is a symbolic confirmation of the completion of the entire process.
Myths are still alive …
Although the DKMS Foundation has been spreading the idea of donating bone marrow and hematopoietic stem cells for 13 years, our knowledge in this area is still insufficient. This is evidenced by the results of the study “Blood cancers and the idea of bone marrow donation of bone marrow and stem cells donation in the eyes of Poles”, conducted by CBR Biostat in 2019, and then repeated two years later.
Interestingly – while the vast majority of us have heard about the donation of bone marrow and stem cells, still a large group of Poles do not know what it is. In 2019, the answers were: Yes, I have heard, but I do not know what it is – 36,9 percent. respondents, and in 2021 – 37,2 percent.
The study also showed that the myths about bone marrow donation are still alive. Many of us mistakenly believe that the method of bone marrow harvesting is spinal puncture, transfusion, or surgery. In fact, 85 percent. of cases, hematopoietic stem cells are collected from the donor from the peripheral blood using the so-called apheresis, which is similar to the procedure for donating blood. In the remaining 15 percent. the marrow is taken from the plate of the iliac bones.
The study also looked at the reasons that prevent us from registering with the bone marrow and stem cell donor database. Almost 3 out of 10 respondents indicated that they are afraid of the procedure itself. In turn, 11,3 percent. believes that this could have an adverse effect on their health. In both categories, there was an increase in indications compared to 2019 – by 9,3%, respectively. and 3,1 percent
The fact that the bone marrow collection does not hurt is best evidenced by the stories of the Donors, which can be found on the DKMS Foundation website. When stem cells are collected from peripheral blood, the only discomfort may be the moment when the cannulas are inserted into the hand. During the mobilization of hematopoietic cells before their collection, flu-like symptoms may occur – bone ache, low-grade fever or headaches. When it comes to collecting bone marrow from the plates of the ilium, the procedure is performed under general anesthesia, so pain is out of the question. A few days after the collection, however, the donor may experience discomfort in the area of the injection itself, similar to a bruise.
Also, the belief that donating bone marrow negatively affects the health of the donor has nothing to do with reality. First, the donors are carefully examined to see if their health condition allows the collection procedure to be carried out. Secondly, our body has enormous regenerative abilities, and hematopoietic stem cells multiply throughout human life, giving rise to other blood cells, which is why they will never run out.
When hematopoietic stem cells are collected from peripheral blood, the donor donates some of the cells that have been produced and temporarily transported into the bloodstream by taking a growth factor (G-CSF – granulocytic colony growth factor, causing the hematopoietic stem cells to temporarily pass from the marrow to the blood) to several days before donation. It does not affect the proper functioning of our bone marrow after donation. When it comes to collecting the marrow from the iliac plate, the collected material is completely rebuilt within 2-3 weeks.
And how is it with the claim that having a tattoo excludes the possibility of registering in the base of donors of bone marrow and stem cells? This is another myth – potential donors do not have to report having a tattoo or treatments such as piercings and permanent make-up, but they should remember when it was done. The tattoo is also not a problem at the stage of the CT (confirmatory typing) procedure, but you should inform the coordinator about it and indicate its possession in the medical questionnaire, stating the date of its execution.
The DKMS Foundation will inform the transplant center about this and, if necessary, take it into account during the donor selection procedure. Such a procedure is recommended especially in the period of the “serological window” – that is 4 months from the moment of tattooing. If the tattoo was done earlier than 4 months, the standard tests performed during the CT confirming typing procedure will detect the possible risk.
Step by step download
The procedure of donating, collecting and transplanting the bone marrow consists of several stages. If it turns out that you are a compatible donor for a patient in need, the DKMS Foundation will contact you by phone, e-mail or by sending correspondence by post. First, you will be asked if you still want to donate your stem cells. Secondly, as long as nothing has changed, you will be invited to a preliminary test that will confirm whether you can help your “genetic twin” without any problems.
It is very important to make a careful decision – refusal to donate stem cells when the Recipient is prepared to perform the transplant (he has undergone chemo- or radiotherapy) may have many negative consequences, including the recipient’s death.
The next step is to collect hematopoietic stem cells. As we have already mentioned – 85 percent. of cases, the transplant material (bone marrow hematopoietic stem cells) is collected from peripheral blood, in 15% from the spikes of the iliac plate. Importantly, the foundation’s coordinator will accompany you through the entire procedure. Together, you will decide on issues related to a possible travel to the collection center, hotel booking and a certificate for your employer. After downloading, the coordinator will also provide you with three information about the patient – you will learn their gender, approximate age and country of origin.
You already know what the donation procedure looks like from the donor side. But what happens to your “genetic twin” after transplantation? After the surgery, the post-transplant period begins, i.e. the time of waiting for the transplant to accept. Due to the decreased immunity, the patient has to stay in isolation and scrupulously follow the rules of protection against possible infections.
If after 14-30 days it turns out that new white blood cells and platelets have appeared in the peripheral blood, so that there is no need to transfuse blood products, it is a sign that the marrow has started to work. When the patient’s condition is stable, he or she is discharged from the hospital, but must appear at the Transplant Clinic for check-ups and further arrangements. Approximately three months after transplantation, visits become less frequent. Transplant failure or rejection by the recipient’s body occurs sporadically. Then the need for another transplant may arise.
Privileges, ID cards and … a badge
Although donors are usually motivated to donate selfless help, their time is rewarded. And we do not mean – reimbursement of travel and hotel costs or their fully paid days off. Each Donor who once donated bone marrow or other regenerating cells and tissues receives a “Transplant Donor” card, which entitles them to use out of order outpatient health care.
If, on the other hand, you decide to donate bone marrow, hematopoietic cells or lymphocytes at least twice, you will receive an ID card and a “Meritorious Transplant Donor” badge. It is issued by the Ministry of Health and presented once a year during a formal meeting. A Meritorious Transplant Donor, in addition to the right to use out of sequence outpatient health care, also has the right to free (up to the funding limit, provided for in the Act) supply of drugs, covered by the list of reimbursed drugs and the list of drugs that can be used in connection with donating blood, i.e. vitamin preparations, folic acid and iron. But that’s not all – both the “Transplant Donor” and the “Meritorious Transplant Donor” in many towns in Poland have the right to use public transport free of charge.