Being Your Own Advocate

In some cases it may only be possible for you to have one caregiver with you. If this is the case, we suggest arranging occasional visits by other family members and friends who can provide support so that the care-giving task does not fall on just one person. Ideally, you would be able to arrange to have more than one caregiver, as the care-giving role can be very demanding. Caregivers can sometimes experience a degree of anxiety.

Having more than one caregiver allows each person to have their own time to rest, relax, recharge and have time away from the hospital. It also allows you to share your feelings and experiences with more than one person.

When choosing a caregiver, it should be someone you are comfortable around, is comfortable around you, and is able to help you through your treatment. Another consideration is whether or not the caregiver will feel comfortable in the hospital environment.

The responsibilities of a caregiver include:

• Providing physical care during treatments, in hospital and at home
• Providing transportation to and from the hospital during treatment and follow-up care
• Providing emotional support
• Helping the patient with oral medications if necessary
• Identifying changes in the patient’s condition
• Obtaining medical care if needed
• Gathering information
• Keeping family and friends up-to-date about the patient’s condition
• Monitoring the number of visitors in and away from hospital
• Preparing food

Here are some valuable suggestions from former patients and families for caregivers:

• Try not to put your life on hold. Continue to meet with friends, participate in hobbies or activities. Maintain as “normal” a schedule as possible in order to keep you energized and less likely to feel isolated, lonely and/or burned out
• Crying is normal and a healthy release
• Be good to yourself. Self care is not a luxury; it’s a necessity! If you intend on being a caregiver for your family member over the long term, it is essential to make and take time away for yourself
• Learn to recognize when you are stressed and identify your stress “triggers”. Take care of your own physical, emotional and spiritual health. Deep breathing, visualization, meditation, and physical exercise can all be helpful for reducing stress. You can access more information on this through the BMT social worker
• Have someone you can talk to. Seek support from other caregivers and professionals and develop a personalized support system. You can access a list of community resources from the BMT social worker 

Take your temperature with a Celsius thermometer when you get up in the morning, in the early evening (around 6 pm), and any time you feel warm or unwell.

• Call the nurse or doctor if your temperature is higher than 38.0°C.
• Do not take your temperature right after eating or drinking. This may not give an accurate reading.
• When taking your temperature, place the thermometer in your mouth, under the tongue, back by the molars. Keep your lips closed and breathe through your nose.
• Keep the thermometer clean by rinsing with warm soapy water and drying it, or follow the manufacturer’s instructions for cleaning.

It is essential that you properly care for and clean your Hickman® line. Developing an infection can be very serious. Here are some guidelines for you and your caregiver:

• You will be taught how to properly care for your Hickman Line while you are in hospital. Please make sure that you and your caregiver participate in this process.
• Always wash your hands before doing any line care.
•  If you do not remember the steps to change your dressing you can ask to be shown again at your next outpatient appointment. 
• Cloth (mepore) dressings  must be changed every two days and clear (tegaderm) dressings must be changed every 7 days. If the dressing gets damp, soiled or is falling off, it must be changed immediately.
• Your hickman line should always be clamped when not in use
• Do not submerge your Hickman line in water; this means no baths, swimming, or hot tubs while you have a Hickman® line.
• Let your RN or Doctor know if you notice your Hickman® line is red, swollen, bruised, draining fluid, or painful.

For more information and to access a printable Hickman Line Educational Booklet, click below.

Hickman Line Booklet PDF

Prior to Treatment

It is very important that prior to treatment, you see your dentist to identify and take care of any outstanding dental issues you may be having. Good oral hygiene will be important to you before, during and after your transplant.

The dental team will see you if you encounter any related issues while an inpatient. Following discharge, they are available to consult with your community dentist about general oral care.

Taking Care of Your Mouth, Teeth & Gums

• Brush regularly after meals and at bedtime 
• Use a soft toothbrush. It can be further softened under hot water if necessary if gums/tissues are sensitive. Remember to brush the tongue as well as the gum line. 
• Toothbrushes should be changed every two weeks when in hospital. 
• If you don’t floss daily, now is not the time to start
• Let your nurse/doctor know if there are any changes to your gums or oral mucosa
• Regular toothpaste may cause discomfort to fragile tissues. Use a milder product without whitening. The dentist can make recommendations.
• Clean your toothbrush by rinsing it well after brushing.
• Rinse with chlorhexidine – a medicinal mouthwash – twice a day in the morning, and at bedtime.
• Remove dentures, except for mealtimes. Dentures must be kept meticulously clean and should be soaked in denture solution when not being worn. They must be thoroughly rinsed before insertion.
• Avoid sweets, juice and soft drinks, except at meals.  For comfort when the mouth is dry, use plain, unflavoured water.
• Avoid Vaseline or other petroleum products for dry lips. Lanolin is the recommended alternative. Having a lip balm is very useful especially if you are having radiation because your lips can become more sensitive. It’s important for you to moisturize so they don’t become cracked and bleed. This will decrease your risk of infection.
• Avoid commercial mouthwashes since most of them contain alcohol that can dry or irritate your mouth. 
• Avoid brushing/flossing if you are bleeding, have sores or it becomes painful and difficult. Continue to use the chlorhexidine mouth rinse if you are able to tolerate it.  The Doctor may prescribe another mouth rinse if your mouth is painful.

Post-Stem Cell Transplant Mouth Care

• Change your toothbrush once a month for the first 6 months after you are discharged.
• Have a dental exam every six months.
• Contact your BMT doctor before you have any dental work done, as you may need antibiotics. Your BMT doctor and dentist will advise you.

Mucositis & Management

One of the side effects of chemotherapy may be mucositis. This is a condition in which cells lining the inside of your mouth and throat become irritated and inflammed. It can be painful and can significantly affect your ability to swallow and/or talk. If you experience mucositis, you will be prescribed medications and special mouth rinses to relieve the pain. The mucositis will heal when your neutrophil count recovers after chemotherapy. 

As a result of mucositis, you may develop open sores. It’s important to keep your mouth clean so as to avoid any potential infection.

Contact Lenses

There is an increased risk of injury to your eyes when wearing contact lenses while receiving chemotherapy or a stem cell transplant, therefore, this is not recommended.

Consult your  BMT doctor to determine when it is safe to start wearing them again. When you resume wearing contact lenses, you will be at a higher risk of getting an eye infection.  Remember the following:

• Always wash your hands before putting in or taking out your contact lenses.
• Clean your contact lenses very well before putting them in your eyes.
• The frequency of changing lenses should be according to the manufacturers instructions/recommendations

Eye Examinations

Some people experience changes in their vision following a stem cell transplant. These changes are often temporary and due to medications. Cataracts can also occur after a stem cell transplant. Because of these possible changes we advise that you have your eyes examined by an ophthalmologist (eye doctor) annually and more often if instructed by your doctor.

One of the most important, simple and effective ways to prevent infection is to WASH YOUR HANDS. In our daily activities our hands come into contact with a lot of things. So remember to wash them often, especially before you eat or touch your face.

Wash your hands before and after preparing food, after using the bathroom, petting your cat or dog, and touching any soiled object.

The importance of hand washing for patients, family and staff cannot be stressed enough. Hand washing is the number one tool in decreasing the spread of viral and bacterial infections.

When you are an inpatient, each patient’s room has a toilet to be used only by the patient. All hygiene concerns should be immediately reported to the nurse.

The Right Way to Wash Your Hands

Washing your hands thoroughly with soap and water involves fully lathering the hands for at least 30 seconds. Make sure to rub all surfaces vigorously for 20 seconds and rinse thoroughly under a stream of warm water. Use a clean towel at home and if possible, disposable paper towel in public washrooms. Use the paper towel to turn off the faucets and open the door. Antibacterial soap is not required.  

Soap and water is the best option for washing your hands. When not available use hand sanitizer. All hand sanitizer should contain at least 60% alcohol. Use a generous amount of hand sanitizer and rub all surfaces of your hands vigorously for 20 seconds. Do not wipe off the sanitizer, allow it to dry on your hands.

Other Hygienic Recommendations

1. Take a shower every 2 days using soap.
2. If you shower and you have a Hickman® Line, cover it with a plastic wrap and secure it with tape. This will decrease soaking and soiling the dressing.
3. For dry skin, you can use a mild moisturizer or baby oil after your shower.
4. Avoid lotions with alcohol and fragrances since alcohol may cause dry skin.
5. You should use a clean towel and face cloth every day. Do not share with other family members.
6. Put on clean underwear and clothes every day after your shower.
7. Only use new makeup and skin care products.
8. Spray deodorants may be more hygienic than roll-on deodorants.
9. Use an electric razor for shaving until otherwise advised by your doctor.
10. Do not go barefoot as you might accidentally nick, cut or bump your foot.

Recommendations for Female Patients

• Avoid douching.
• After using the bathroom, make sure you wipe from front to back.
• Avoid using tampons.

Please DO NOT SMOKE! Or Vape!

Smoking/vaping can cause respiratory infections that can lead to life-threatening pneumonia or fungal infection when your immune system is severely weakened by chemotherapy and stem cell transplant. Smoking/vaping includes cigarettes, cigars, pipes, marijuana, inhaling cocaine and chewing tobacco. You should be avoiding second hand smoke as well. It is recommended that no one in your home or shared space be smoking/vaping. 

VCH is a smoke free environment. This includes the grounds at the hospital. There are many effective aids to help you stop smoking. If you need assistance with quitting smoking, please talk to your doctor or nurse.

Why do I need a Medic-Alert® Identification?

A Medic-Alert® Identification bracelet or chain is strongly recommended after you undergo a stem cell transplant. This is because every blood transfusion that you receive must be irradiated. Irradiation inactivates the lymphocytes (a type of white cell) that could cause or worsen graft-vs-host disease. If you are taking steroids (Prednisone or Decadron), this information should be carried with you as well. 

What should I put on my Medic-Alert®?

The information should include any known allergies and also say: 

“Stem Cell Transplant Patient, Irradiate All Blood Products – Call MD 604-875-4343.”

How do I get my Medic-Alert® Identification?

1. Visit the Medic-Alert® web site.
2. Or obtain an application form from your nurse.

You are encouraged to get out and do things you enjoy. However, try to stay away from crowded areas such as malls, buses, busy grocery stores, and movie theatres where you may come into close contact with people who may be ill.

If it is necessary go to these areas, go at the least busy times, usually in the morning. Always follow strict hand washing during and after activities. Ask your physician when it is safe to be in more public places and around crowds of people. This will all depend on your white blood count.

To be safe, please follow these guidelines:

• Take daily walks outside in the fresh air
• If you have a sufficient white cell count, it is OK to visit public places such as a movie theatre during off-hours when fewer people are there.
• If you suspect someone is sick, avoid visits until they are well.
• Encourage visitors to call ahead.
• Ask visitors to stay home if they are unwell.

Infants, toddlers, and children under 12 can be reservoirs for infection. Avoid close contact with anyone that is sick or recently recovering from an illness. Let common sense be your guide and minimize contact if you suspect an infection or if a child has been exposed to an infection at school/daycare.

Vaccines and Children

Avoid children who have had the oral polio vaccine for 8 weeks. In Canada the injectable polio vaccine is most commonly used and does not present a risk to BMT patients.

Even if children have had the chickenpox vaccine, there is still a possibility of them getting the disease. It is very important to avoid children who you suspect have come into contact with the chickenpox virus. After exposure to chickenpox, symptoms may appear in 11 to 20 days. The contagious period starts 1 to 2 days before the rash appears and lasts until all the spots have crusted over.

Notify your doctor immediately if you suspect you have been exposed to chickenpox.

Some of the routine childhood vaccines are a live virus vaccine and can pose a risk to a stem cell transplant patient.  Talk to your physician or RN about how long you should avoid contact with children after their immunizations. 

What are shingles?

Shingles (also known as “zoster” or “herpes zoster”) can occur when the virus that causes chicken pox (called Varicella zoster) becomes active again. The virus remains dormant, never leaving the body and can be reactivated in patients whose immune systems are weakened.  These viruses are highly contagious and can be passed on to others. Contact with anyone who has been exposed to or has an active shingles or chicken pox infection should be avoided.

Will I get shingles?

Up to 50% of BMT patients and some chemotherapy patients will get shingles during the first year after treatment. For these reasons you may be given preventative medications while your immune system is suppressed.

What are the symptoms of shingles?

Shingles can appear anywhere on the body. The most common symptom is a burning pain and/or itching, which may occur several days before a skin rash/lesions appear. The symptoms often occur in a strip or band as the infection usually follows the path of a nerve. When the lesions appear they are usually in groups of raised, red blisters that may look like clear pimples. They are usually quite sore and itchy. These blisters may ooze fluid, break and then, in time, dry up. The fluid in the blisters contains the virus and is contagious to others. When the blisters are dried and form a scab, they are no longer contagious.

What should I do if I think I have shingles?

There are a number of drugs that are useful in the treatment of shingles. It is very important to get prompt treatment to reduce the chance of complications.  It is up to you to be alert to the signs and let the healthcare team know right away if you think you might have shingles.

Here is what you should do:

• Let your doctor or nurse know right away – do not delay.
• If you are being treated in the Outpatient Clinic, let the clinic know by calling ahead. We need to take measures to prepare for your visit to avoid the chance of infecting other patients. Do not use the waiting room until you have been examined. You will need to be isolated from other patients, until you are no longer infectious.
• Try not to touch the spots or scratch them.
• Do not apply topical remedies (calamine, baking soda, etc.) until the doctor has assessed you. Some of these may make the infection worse and none of them will make it better.
• Wash your hands often to decrease the risk of spreading the infection.
• Stay away from women who might be pregnant, as there is a risk to the fetus if the mother gets infected.
• Wear loose clothing over the affected area (cotton is best). If the infection is in your groin area, wear cotton underwear or boxer shorts. Do not wear nylons/synthetics.
• Wash your clothes, linens, and towels often using bleach if possible. Keep your laundry separate from others at home.
• Do not share towels, facecloths or napkins with other people.

Do I need to get the flu shot?

In most cases, yes. Some physicians may recommend that you get a flu vaccine prior to undergoing treatment. Most transplant patients who are more than 6 months post transplant should receive the influenza vaccine on an annual basis. Your BMT doctor will discuss your vaccination schedule with you.

Does my family need to get the flu shot?

Family members, caregivers, and close household contacts of patients should also be vaccinated annually against influenza. This is especially important for those patients who are less than 6 months post transplant or those who, for other reasons, have been advised not to receive the vaccine.

Do I need other types of vaccination?

Patients undergoing high dose (myeloablative) chemotherapy and stem cell transplant may lose the immunity that they have previously acquired through vaccinations or natural infection. It is therefore necessary that at some point you will need to be re-vaccinated against certain diseases. Generally this will be arranged one year post-transplant. Your BMT doctor will discuss your vaccination schedule with you.

What is an inactivated flu vaccine?

The inactivated vaccine contains a dead influenza virus that when injected causes the body to form antibodies against the virus. People with cancer should receive the inactivated vaccine, which is administered by a shot to the arm.

Can the influenza vaccine give me the flu?

No, the influenza vaccine CANNOT give you influenza.

What are the side effects of the influenza vaccine?

• Most people have no symptoms after their influenza shot.
• Some may have redness or soreness for one or two days in the area where the needle was given.
• Mild influenza-like symptoms may occur in some patient, especially those vaccinated for the first time. Symptoms can include mild fever, headache, fatigue and aching muscle starting 6–12 hours after vaccination but lasting less than 48 hours.
• Serious adverse effects of the influenza vaccination have been reported, including neurological complications, but these are rare.
• Like with any vaccine or drug, there is a very rare possibility of a shock-like allergic reaction called anaphylaxis. This can include hives, wheezy breathing, or swelling of some part of the body. This requires immediate medical attention. Anaphylaxis is presumably due to hypersensitivity to egg protein. People who have had a previous allergic reaction to the influenza vaccine, or any of its components, including eggs, should talk to their doctor before getting an influenza shot.

Where can I get more information?

For more information regarding the influenza vaccine in British Columbia please go to the BC Health Services website.

Recommendation

• Lifelong seasonal administration of influenza inactive vaccine should be given at least 2 weeks before the start of chemotherapy to allow antibody production.
• Avoid administering vaccination during chemotherapy or active radiation treatment because of suboptimal responses to vaccines.
• Resume vaccination 3-6 months after chemotherapy or active radiation treatment is complete, as instructed by your doctor.

Recommendation

• Lifelong seasonal administration of influenza inactive vaccine should be given at least two weeks prior to the chemotherapy you receive before stem cell transplant.
• Resume vaccination no earlier than 6 months post-transplant.

You may find it necessary to make some adjustments to your wardrobe and laundry routine. Here are some suggestions:

• If you find your skin is sensitive, loose fitting clothes may be more comfortable.
• During the winter, bundle up and don’t forget a hat or cap. Avoid staying outside for long periods on a cold day.
• Put on clean underwear and clean clothes every day after your shower.
• Wash all new clothes before wearing them.

Prior to discharge, your home should be thoroughly cleaned in the same way as you would do a good “spring cleaning”.

1. Any commercial cleaning soap or solution can be used. It does not need to be labelled “anti-bacterial”.
2. Rugs and carpets should be thoroughly vacuumed.
3. Clean kitchen and bathroom sinks, tubs, shower area, and toilets with a cleaner that kills mildew.
4. Pour 1 cup of liquid bleach down all drains.
5. All kitchen appliances, including the inside of the refrigerator and counter tops, should be thoroughly cleaned with a commercial cleaning soap or solution
6. Replace furnace/air filters.

Until your blood counts have fully recovered, someone else needs to do the general housekeeping.

The following house chores should be done, if possible, by someone other than the person undergoing treatment:

1. Dust and vacuum the house once a week.
2. Clean all bathrooms weekly (more frequently as needed) with a good general disinfectant.
3. Change bed linens weekly or more often if needed.

Plants & Flowers

It is not necessary for you to get rid of all your houseplants. However, we do recommend that you don’t touch, water, or re-pot plants or flowers. Also avoid raking leaves, mowing the lawn, planting/weeding/watering a garden until your doctor informs you that it is safe to do so. Soil contains bacteria, fungi and molds. When you get the OK to go back to gardening, be sure to wear gloves for at least 6 months.

Pets & Animals

Dogs, cats, and fish do not pose a great risk of infection to you, if you follow the guidelines below. Birds, rodents, or reptiles can be an infection risk to you and are not recommended. It is best to let someone else care for them for a while. If you do not have a pet, now is not the time to adopt a pet.

• Do not clean your pet’s cage, litter box, pen or fish tank. Have someone else do it. Check with your doctor before resuming these activities.
• It is best that your pet does not sleep in the same room as you.
• Be sure to wash your hands after petting and handling your pet.
• Avoid being scratched by your cat.

If you or a member of your household has an occupation involving the handling of animals, such as a vet, farmer, or pet store vender/employee, be sure to talk with your BMT doctor about specific safety guidelines.

Driving

Most patients find that they usually feel too weak or tired to drive. To be safe, please check with your BMT doctor before driving in general.

Driving to Clinic Appointments

We do not want you to drive yourself to clinic appointments, as you may need a blood transfusion or other treatment that requires pre-medications that will sedate you. You might also be taking medications that could make you feel drowsy, for example Ativan, Benadryl, Gravol, Dilantin. Please arrange for someone to drive you to the hospital.

If you need help with transportation to and from Leukemia/BMT Daycare, talk to the social worker or your nurse.

Public Transit

While your immune system is recovering, please avoid public transportation systems such as the train or buses. Public transit is very crowded and you are at a higher risk of infection. If you need to use the ferries, avoid the more crowded areas and busy times. If you are concerned about picking up an infection, wear a mask.

Travelling

Please check with your doctor before making any travel plans, especially air travel and travel to other countries. It is important for your neutrophil and platelet counts to be at a level that is safe for travel.

Most post stem cell transplant patients find that they need at least 6 to 12 months before they feel well enough to begin going back to work or school. You may wish to limit schoolwork or work-related activities at home while you are recovering before returning to such activities on a part-time basis. Your BMT doctor will discuss with you when you are medically well/safe to return to work/school.

Your skin will be more sensitive to the sun because of the effects of chemotherapy. Follow these guidelines when you go out:

• Avoid direct and prolonged exposure to sunlight especially between the hours of 11am to 3pm.
• When outside, always wear a hat (wide-brimmed preferred), long sleeved shirt and pants.
• Use a good sunscreen with an SPF of at least 60.
• On a hot sunny day, avoid becoming overheated, seek air conditioning or shade, and wear loose fitting clothing.
• Be careful of areas that can reflect sun/UV rays such as the beach, water and swimming pools.
• Stay well hydrated.