DONATING BLOOD STEM CELLSInformation package

for those selected as stem cell donors

You have been selected as a stem cell donor for a seriously ill patient. All stem cell registries in the world have a total of more than 30 million members and, from this large amount of people, your stem cells are the most suitable for

this particular patient.

The purpose of this information package is to tell you about the stem cell donation process. It is important that you understand the process you are about to enter, so please read through the information package carefully.

DEAR STEM CELL REGISTRY MEMBER

Donation is always voluntaryDonation of stem cells is always based on voluntary will to help. Please consider your donation decision very carefully and make your decision independently. You can withdraw from the donation process at any time without needing to explain your decision in any way. However, in such a case, it is important that you understand the consequences of your withdrawal to the patient. Cancellation within two weeks from the agreed date of donation will most likely lead to loss of the patient’s life. In other words, if you decide to revoke your consent to donate, please do it as early as possible so that the patient’s pre-treatment for transplant has yet not been initiated.

Patient’s pre-treatmentOnce the decision regarding the donation time has been made, the patient begins to receive extremely strong treatments in preparation for the stem cell transplant.

The patient’s own bone marrow and immune system are de-stroyed so that cancer cells would disappear and his or her body would not reject the transplant. Cancelling the process at this stage is fatal to the patient. In practice, the patient’s pre-treatment is initiated approximately 10 days before the agreed date of donation.

Medical examinationA physician will call you and agree an appointment for your medical examination. The examination is performed at the Haematology Outpatient Clinic of the Meilahti Hospital in Helsinki. The Stem Cell Registry will provide you with more detailed travel instructions.

In the medical examination, your health will be thoroughly checked by the physician. You will also visit the laboratory to have blood tests, chest X-ray and ECG taken. There is no need to refrain from eating due to the examination. You may eat and drink normally.

Please reserve one whole day for the medical examination. We recommend that you come to the examination by public trans-port, but naturally you are also allowed to use your own car.

About one week from the examination, the physician will contact you and inform you of the results and the decision whether you are eligible to donate or not. After this, the Stem Cell Registry will contact you about the practical arrangements related to donation.

Recovery and risks

Because the device returns the red blood cells back to the donor’s blood stream, collection of stem cells from the blood does not notably lower the haemoglobin concentration of the donor.

The growth factor treatment may cause pain in the back and limbs when the cell volume of the bone marrow increases. Other possible side effects include flu-like symptoms, head-ache, nausea, insomnia, sweating, chills, skin symptoms, or fe-ver. Standard painkillers will help relieve the symptoms during treatments. After the stem cells have been collected, possible pain ends very quickly.

Leukocyte growth factor has been used to treat patients for some years, and is not known to cause long-term adverse effects.

The donor will be on sick leave for the duration of the growth fac-tor treatment and collection of stem cells, as well as for a couple of days after the procedure, one week in all.

Donation from the bone marrow When donating stem cells from the bone marrow, the donor will come to the hospital the day before the collection proce-dure. He or she will have blood tests taken and meet a physi-cian. The donor will stay overnight at the hospital.

Collection of stem cells from the bone marrow is performed under general anaesthesia.

Bone marrow is withdrawn from the pelvic bone above the buttocks with a needle, small amount at a time. The total volume collected is 300–1200 millilitres.

The collection lasts one to two hours. The collection is per-formed by two physicians specialised in the procedure.

Bone marrow is self-regenerating tissue and the bone marrow that was collected is quickly replaced by new, normally func-tioning bone marrow. The collection does not even temporar-ily affect the ability of the bone marrow to produce different blood cells. Recovery and risks

The donor is anaesthetised like any surgical patient.

Due to the anaesthesia and drop in the haemoglobin level, some donors feel tired for a few days after the donation. Oth-er possible symptoms – which usually pass quickly –include sore throat, headache, nausea, dizziness, or bleeding from the puncture locations. Standard painkillers can be taken to relieve these symptoms.

The areas from which bone marrow was collected may be ten-der for 7 to 10 days after the donation. A few needle marks will be visible on the skin, constituting a slight and usually temporary cosmetic problem.

Donation from blood streamWhen donating stem cells from blood stream, the process will begin with growth factor treatment at the Meilahti Hospital.

For the duration of the growth factor treatment, the donor will stay in Helsinki area.

In the growth factor treatment, the donor is given subcutane-ous injections on his or her arm on four or five consecutive days. Due to the injections, the stem cell volume increases in the bone marrow from where stem cells transfer to the blood stream. Please reserve couple of hours a day for the injec-tions.

This growth factor is found in small concentrations in the body under normal circumstances, so the agent does not cause a risk to the donor.

Transfer of the stem cells into the blood stream is measured by means of blood tests. Donation of stem cells always occurs on the fifth day after the growth factor treatment has begun, and if necessary on the sixth day as well.

At this stage, the donor will spend the whole day at the hos-pital.

The actual collection of stem cells occurs in kind of similar manner as normal blood donation. Cannulas are inserted on the inside of the donor’s elbows through which the blood will circulate. The blood is circulated through a device, designed particularly for this purpose, where stem cells are separated from the blood. All other components of blood are returned to the blood stream through the cannula inserted in the donor’s other arm.

The collection lasts about 5-6 hours.

If one collection does not produce a sufficient amount of stem cells, the collection will continue the same way the next day.

Throughout the donation, the donor will lay down in a quiet room, where a special-trained nurse will monitor how the col-lection proceeds. Due to the cannulas, the donor cannot bend his or her arms during collection. The nurse will assist him or her with everything as needed.

On rare occasions, venous access on the inside of the donor’s elbow is poor due to small veins, for example, and the blood does not flow well. In this case, a central venous catheter will be placed on the donors neck to allow collection. An experi-enced anaesthesiologist will insert the catheter under local anaesthesia.

After collection, the doctor in charge at the collection centre will ensure that the donor feels well. If everything is all right, the donor will be able to go home.

Two different methods of donationStem cells can be donated in two different ways: from the blood stream or directly from the bone marrow. You have already been informed about which donation method is the better one for the patient in this particular case. The donation method will decide how the donation process proceeds. In the following, we describe both donation methods.

At the moment, most of the donors – some 80 per cent – donate stem cells from the blood stream. In approximately 20 per cent of the cases stem cells are donated directly from the bone marrow.

The donation takes place at the Haematology Outpatient Clinic of the Meilahti Hospital in Helsinki. Both clinics have experience of stem cell collection and an experienced collection team for the purpose.

Depending on the donation method, the process takes up to a week. You will be on sick leave for the duration of the whole process.

In most cases, donors recover fully from the procedure within two weeks. Risks related to the collection are minimised in advance by a thorough medical examination performed by a physician.

Donation of stem cells from bone-marrow reduces neither the donor’s resistance to infectious diseases nor the effectiveness of any vaccines that may be administered. The bone marrow donor can go home the day after the donation.

After the donation, the donor will be on sick leave for approxi-mately a week.

Donation from the blood or bone marrow?The patient’s medical condition will decide which donation method is used. You may discuss the donation method chosen for you in closer detail with the physician in connection with your medical examination.

Often it is of great importance for the patient whether the transplant given is collected from the bone marrow or the blood stream. For example, child patients receive most often bone marrow transplants, because when using transplants collected from the blood the risk of developing long-term problems related to rejection reactions is greater. Exposing child patients to these is avoided. Adult leukaemias, on the other hand, are often more difficult to tame, which means that a transplant collected from the blood must be chosen for them in spite of the risk of rejection, because they offer a more ef-fective treatment against leukaemia.

Stem cell transfer to the patient The blood stem cells you have donated are transferred to the patient in a hospital – in Finland or abroad. The stem cells must be transferred to the patient as soon as possible after their collection. These healthy stem cells find their way into the patient’s bone marrow and initiate the normal formation of blood cells, allowing the patient to heal.

The patient’s medical state and disease status have an impact on how well the stem cell transplant begins to function.

When you donate stem cells, you give the patient a chance at life. Stem cell transplant is used as the patient’s last treatment option, which in practice means that without new stem cells the patient would probably die. Stem cell transplants help to cure 40–50% of adult leukaemia patients and 60–70% of child patients. In some other diseases, the results are even better than these.

How should I prepare for the donation?As the donation date draws nearer, take extra good care of your hand hygiene and avoid contacts with people with a cold. Please note that a new sex partner, tattoo or piercing, acupuncture and certain foreign travel destinations cause a temporary donation restriction, so you should avoid these. If necessary, you can ask more about these from the Stem Cell Registry’s coordinators.

It is important that you remain healthy before the donation.

Due to your own and the patient’s safety, you cannot do-nate while ill. However, if you should fall ill, contact the Blood Service immediately: telephone on weekdays from 9 am to 4 pm, tel. +358 29 300 1515 and at other times tel. +358 29 300 1001.

Do not use any flu medications, aspirin, or other acetylsalicylic acid preparations for two weeks prior to the donation, to mini-mise the risk of bleeding.

Bring comfortable, loose clothes and your own toiletries with you to the hospital.

Even though everything has been planned in advance, the schedule may still change suddenly. You might have to wait to see the physician or queue for the laboratory. It is a good idea to bring something with you to pass the time, for example something to read.

On the donation day, you will be served food at the hospital. For safety reasons, as a rule, you should use public transport instead of your own car when coming to donate.

After the donationIf you experience fever, other symptoms of infection, or pro-fuse bleeding of the puncture location after the donation, con-tact the physician who performed your health examination.

The physician will call you in any case after about one week from your donation. He or she will enquire about how you feel and, if necessary, refer you for blood tests. Blood tests are taken to monitor your recovery.

In addition, in about one year’s time, the Stem Cell Registry coordinator will approach you either by post or telephone, and will ask you about your experiences of donating stem cells.

If there is something troubling you, or you have questions re-lated to your recovery, please do not hesitate to contact either the Stem Cell Registry or the physician who performed the medical examination any time.

If you wish, you can enquire after the patient’s health from the

Stem Cell Registry about a year and a half after the donation.

Second donation You may be asked to donate stem cells a second time. The same patient may need another dose of stem cells. Five to ten per cent of donors are invited to donate a second time. The request may come years after the first donation. One donor may not donate more than three times.

The patient may need stem cells again if the original transplant does not function adequately well, his or her body begins to reject the transplant, or he or she has a relapse. Most commonly, donors are called back to donate leucocytes. Donated leucocytes are needed if the patient’s disease shows signs of relapsing. In most cases, the request is urgent and the leukocytes are collected from the blood stream. No growth factor injections are administered this time, so the donation event is clearly a lighter experience for the donor than ac-tual stem cell donation. The donation of leucocytes also takes place in Helsinki.

Compensation of expenses All stem cell donations take place at the Meilahti Hospital, in Helsinki. The Blood Service will compensate all direct costs caused by the medical examination and donation of stem cells against receipts. Such costs include: travel, compensation for the use of own car, meals, lost income and potential hotel expenses.

The Stem Cell Registry coordinator will help you with the travel arrangements related to both the medical examination and donation of stem cells. We will provide you with the neces-sary instructions, cost compensation forms, a letter for your employer, an insurance form, and taxi vouchers, if necessary, to travel effortlessly from one place to another. Accommoda-tion will be arranged for donors from outside Helsinki or Turku. You can collect the costs caused by the medical examination directly or together with the costs caused by the donation.

The costs will be compensated even if the donation was can-celled for some reason or another. Cancellations can occur as a result of an unpredictable change in the patient’s illness, for example, which force the doctors in charge of the patient choose a different mode of treatment or a different schedule.

Donation of stem cells is voluntary and donors do not receive payment. In addition, the legislation in Finland prohibits pay-ment for the donation.

We will provide you with a sick leave certificate for the day of both the medical examination and the donation. Loss of regu-lar income from full-time work is compensated on the basis of a statement received from your employer. The daily allowance for an entrepreneur is calculated on the annual earnings which form the basis for the entrepreneur’s pension insurance.

Insurance issuesThe Finnish Stem Cell Registry will take care of the insurance cover required for a stem cell donor. You do not need to worry about any insurance issues related to the donation procedure. The insurance cover includes coverage for life insurance, medi-cal expenses, and disability.

Signing the consent All of your test results and other personal information will be handled in the strictest confidence, and the people handling your data are bound by complete obligation of secrecy.

The recipient of your stem cells will not be given any informa-tion on you or your identity. The personal data of stem cell donors is kept in the Finnish Stem Cell Registry and only used for the Registry’s internal purposes.

Before donation, in connection with your medical examination, you must sign a written consent for stem cell donation.

If you have something to askYou can contact the Stem Cell Registry at any stage of the process:

Finnish Red Cross Blood ServiceStem Cell Registry

Kivihaantie 700310 Helsinki

tel. +358 29 300 1515 (weekdays 9 am–4 pm)stemcellregistry@bloodservice.fi

bloodservice.fi

THANK YOU THAT YOU ARE PREPARED TO HELP AN UNKNOWN PATIENT

Stem Cell Registry