Leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDSs) and myeloproliferative neoplasms (MPNs) are types of cancer that can affect the bone marrow, blood cells, lymph nodes and other parts of the lymphatic system. See the Disease Information pages to learn more about the different types of blood cancer.
After your loved one is diagnosed with a blood cancer, he or she will work with members of the healthcare team to determine the best treatment plan. Treatment options vary depending on the patient's diagnosis, age, overall health, and other factors. The patient’s treatment plan might include
- Watch and wait
- Chemotherapy or other drug therapies
- Radiation therapy
- Stem cell transplant
- Blood transfusion
- Palliative care
- Clinical trials
- A combination of any of the above.
See the Treatment pages to learn more about the different treatment types.
How You Can Help. Your loved one may ask you to participate in the process for choosing a treatment plan. You can help in some of the following ways:
- Research and collect information on the patient’s diagnosis and suggested treatment options.
- Be the patient’s second set of ears or offer to take notes at appointments.
- Help the patient find a blood cancer specialist for a second opinion if the patient would like a second opinion.
- Help the patient keep a running list of questions to ask members of the healthcare team.
- Be a sounding board for the patient to discuss each treatment option.
Remember, ultimately, the treatment decision is up to the patient. In an open discussion, you can share your perspective with the patient. Be respectful and supportive of the patient’s decision, even if you disagree with the choices he or she is making.
Read the PDF, Understanding Blood Cancers and Treatment Options, for questions to ask the healthcare team before the patient begins therapy.
Caregiver Responsibilities by Treatment Type
Watch and Wait
You may feel uncomfortable because you know that your loved one has cancer, yet is not receiving treatment right away. Rest assured that the watch-and-wait approach is the standard of care for people whose disease is not progressing quickly, is not widespread and who have no symptoms.
Your caregiver responsibilities during this time may be limited to accompanying your loved one to checkups and providing emotional support. You can also help him or her watch for new symptoms and make sure that they are reported to the healthcare team right away.
Chemotherapy or Drug Therapy
During chemotherapy or other drug therapies, there are many things you can do to help your loved one. Side effects may make it more difficult for your loved one to carry out many daily tasks, such as cleaning, cooking, or grocery shopping. You can take on these tasks and assist with treatment adherence and side-effect management.
Chemotherapy or drug therapy can be given at a treatment center or at home depending on the specific treatment:
- If at the hospital or treatment center, you can keep your loved one company during these appointments. Infusions can last for several hours; some even require hospitalization.
- If at home, you can assist your loved one with taking the medication as prescribed. Depending on your loved one’s treatment plan and needs, it’s possible that you will also need to learn how to use the device to administer drugs, fluids, or nutrition at home.
Read the PDF, Understanding Blood Cancers and Treatment Options, for information about use and care of devices.
Immunotherapy treatments and the ways in which the treatments are given vary and so do side effects. Ask members of the healthcare team what to expect and alert the healthcare team to any new symptoms or side effects. As the caregiver, you can help your loved one to manage any side effects that do occur.
Depending on the specific treatment and side effects, your loved one may not need a lot of assistance with everyday tasks. Even so, cancer treatment can be mentally and physically draining, so he or she may need emotional support or help with shopping, cooking, or cleaning. You can also accompany your loved one to immunotherapy treatments, and take him or her for blood work and scans.
Treatments are typically done every weekday for a period of 2 to 10 weeks. The appointments are usually quick. The patient will likely spend 20 to 30 minutes in the treatment area, even though actual radiation exposure lasts only a few minutes.
You can help by going with your loved one to these daily treatments or by coordinating schedules with family members and friends who are available to accompany your loved one if he or she doesn't want to go alone.
Fatigue is a common problem for patients undergoing radiotherapy. Your loved one may need some assistance with daily tasks in order to rest.
You may also need to help your loved one with skin care. Radiation can cause the skin to be red and irritated and occasionally blister (similar in some ways to a sunburn). Your loved one should bathe the area with warm water, protect the area from the sun, and wear loose clothing. Do not use skincare products on the area without first checking with a member of the healthcare team.
If your loved one receives external beam radiation, you and other people in contact with your loved one will not be exposed to any radiation.
Stem Cell Transplantation
During the pretreatment (conditioning) chemotherapy and/or radiation treatment, the caregiver can assist the patient with daily tasks, help the patient manage side effects, and accompany the patient to treatment.
After the stem cell transplant, the patient will spend 30 or more days in the hospital. Once the patient leaves the hospital, the caregiver can help the patient reduce the risk of infection by cleaning the home, practicing good food safety, caring for pets, encouraging proper self-care and hygiene, and helping the patient to avoid crowds and people who are sick. The caregiver can also be on the lookout for signs and symptoms of GVHD and alert the healthcare team to any changes to the patient’s well-being.
If your loved one lives more than 15 to 20 minutes from the treatment center, the healthcare team may require that the patient find a place to stay that is closer to the center in case serious complications arise. Some treatment centers offer special housing for patients undergoing a stem cell transplant. However, cost can be an issue. Discuss options with your treatment team.
As a caregiver, you can accompany your loved one to the blood transfusion appointments which can last for several hours. Keep an eye on the your loved one and report any side effects that occur, either during or after the transfusion, to the healthcare team immediately.
If your loved one is suffering from pain or other symptoms caused by cancer or the side effects of treatment, ask the healthcare team for a referral to palliative care. The palliative care team can also provide resources to help you manage the practical concerns of cancer treatment such as financial and health insurance issues.
Download or order The Leukemia & Lymphoma Society’s free booklet: Palliative Care Fast Facts.
Ask the healthcare team if a clinical trial could be considered. The patient does not have to wait until the disease is in an advanced state to participate in a clinical trial.
There are also many things a patient needs to consider before he or she decides to enter a clinical trial, including
- The potential side effects of the treatment
- Required tests and procedures
- The number of doctor visits
- The amount of time he or she may be required to be away from home.
In addition, it is important to understand which charges are covered by the clinical-trial sponsor, which are covered by the patient and which are covered by the insurance company.
Side effects of treatment are often a top concern for both patients and caregivers. Reactions to treatment vary from patient to patient. Reactions also vary depending on
- The treatment and/or types of drugs used
- Drug or radiation dose amounts
- The duration of the therapy regimen
- Whether the patient has some other health condition, such as diabetes or kidney disease.
Side effects from cancer treatment can be either short term or long term. Some side effects improve or disappear when treatment ends, while others may show up after treatment ends, sometimes even years later.
It is best to address side effects right away, and there are medications and palliative care options available to help manage some side effects. You can also manage some side effects by making changes to the patient’s food choices and daily habits. Talk to the members of the healthcare team before making any changes.
See the Managing Side Effects page to learn more about side effects.
Read the PDF, Understanding Blood Cancers and Treatment Options, for questions to ask the healthcare team about side effects.