4 to 6 MONTHS PRE-TRANSPLANT: EVALUATION AND ASSESSMENT

You will meet, either virtually or in-person, with different members of your local cancer health care team and/or Vancouver General Hospital Bone Marrow Transplant (VGH BMT) team 4 to 6 months before your transplant for evaluation and assessment.  Numerous diagnostic and imaging tests may be required to confirm you are eligible for a stem cell transplant.  You will undergo chemotherapy, sometimes referred to as induction therapy for 3 to 5 months prior to the stem cell transplant. This goal of the high dose chemotherapy is to kill as many myeloma cells as possible.  The treatment will probably be scheduled at your local Cancer Agency.

At your consultation appointment with your VGH BMT Hematologist/Oncologist, you will receive an important package of information and materials on what to expect from a stem cell transplant. The information package includes a number of useful handouts, resources, and a Patient Education Guide entitled “Your Outpatient Autologous Stem Cell Transplant-Information for Patients and Caregivers”.  Hand outs can be downloaded from the Leukemia/BMT Program website.

Note:  Whenever possible, these tests and services will take place at your local Cancer Agency or hospital.

Tip: ask your BMT physician and team to collect and freeze enough stem cells to support an additional transplant for the future, if required.

1. Diagnosing Multiple Myeloma
   During the early stages of myeloma, there may be no symptoms.  Most people first go to their doctor because of vague symptoms that can be difficult to diagnose, such as fatigue, recurrent infections, kidney problems or back/ribs/sternum pain. 

Your doctor will request:

• • Bloodwork to measure the number of white blood cells, red blood cells, and platelets to determine if M-protein (monoclonal) is present
  • 24 hr urine test to check if M-protein (monoclonal) is present, test free light chains, and check your kidney function (creatinine level)

2. Referral to a local hematologist/oncologist
   If there are concerns with your bloodwork, you will be referred to a general hematologist or oncologist in your area for further testing and follow-up until you are referred to a BMT (Bone Marrow Transplant) hematologist or oncologist at Vancouver General Hospital (VGH).

3. Consultation with specialized BMT Hematologist/Oncologist
   BMT hematologists/oncologists are specialized in blood cancer and stem cell transplants.  At this time, Vancouver General Hospital is the only location in British Columbia and Yukon that performs stem cell transplants. You will be referred to a BMT hematologist/oncologist 4-6 months before your stem cell transplant at Vancouver General Hospital, Leon Blackmore Pavilion 6th Floor. Your BMT hematologist/oncologist will review your health history, do a physical assessment & discuss the stem cell transplant process with you and your family if eligible. They may ask for additional tests before deciding that a stem cell transplant is safe for you.

Note:  Although called a stem cell ‘transplant’, there is no actual organ removed or replaced. Stem cell transplants are not routinely offered to patients above a certain age, such as 70 or more.  If that is the case, the doctor will discuss the many other options with you.

4. Nurse Navigator call: 1 to 3 weeks after the initial consultation
   The dedicated BMT nurse navigators and lovely assistant navigators arrange all the planning, testing and appointments needed in preparation for your stem cell transplant. A few weeks after you meet with your BMT hematologist/oncologist, you will receive a phone call from your assigned Nurse Navigator.  They will give you the dates for your stem cell collection and transplant so you can begin to prepare accordingly.  Please inform your Navigator if you require financial, emotional or physical support so they can get in touch with the BMT support team for assistance.  The BMT Nurse Navigators and assistant nurse navigators are an excellent resource to discuss any questions and concerns you may have.

5. Diagnostic Tests

• • Complete blood count workup (CBC) to measure the number of white and red cells, platelets, hemoglobin and M-protein and calcium levels, for example
  • Specialized blood test to measure serum protein and Beta-2 microglobulin, for example
  • 24-hour urine test to measure M-protein, free light chains and creatinine levels
  • Sample bone marrow via biopsy or aspiration

6. Imaging Tests

• • Full body (skeletal) X-Ray to check for changes in bone structure and determine if there are loss or thinning of bones (osteolytic or lytic lesions) and or fractures
  • CT scans can provide clear detailed images of bone lesions
  • MRI to provide detailed and accurate pictures such as myeloma cell infiltration before bone destruction is visible on X-Ray
  • PET scan is a nuclear medicine imaging technique, but not always used in this setting
  • Bone density scan, if required

7. Chemotherapy/Induction
   Treatment for myeloma is increasingly being tailored to meet the needs of individual patients.  At this point, the standard treatments for myeloma may include a combination of the following:

• • Observation only
  • Radiotherapy (if required)
  • Chemotherapy (pre-transplant)
  • High dose therapy and stem cell transplant
  • Maintenance therapy (if required)

All treatment options share similar goals, namely to help:

• • Control the myeloma (i.e., prevent the production of abnormal plasma cells).
  • Strengthen the bone and prevent fractures.
  • Increase the red blood count and reduce fatigue.
  • Reduce the risk of infections.
  • Promote well-being and quality of life. 

The goal of the chemotherapy 3 to 5 months pre-transplant is to reduce the number of plasma cells in the bone marrow and the M-protein they produce.  There are many forms and combinations of chemotherapy regimes, and the list of available or approved drugs in British Columbia continues to increase through successful clinical trials.  The regime/drug combination is tailored to your specific myeloma mutation.  Chemotherapy is usually done at your local Cancer Agency over a 3 to 5-month period.

Note that myeloma and myeloma treatment create a weak immune system making you very susceptible to infection.  Every precaution must be taken.  Should you feel unwell at anytime please call your local BC Cancer Agency or VGH BMT Daycare at 604-875-4073 ext. 1 Mon-Fri 8am-7pm, Sat-Sun & Holidays 9:00am-6pm or after hours at 604-875-4343.  BC Cancer Vancouver facility can also accommodate in-patients.  Please call 604-877-6000 and follow the prompts.  As a last resort go to your nearest emergency room. 

8. Radiation Therapy
   High-energy radiation may be used to damage myeloma cells and prevent them from growing. Radiotherapy is typically used on specific parts of the body to treat bone pain and plasmacytomas (tumours in the bone or soft tissue), usually in combination with some form of chemotherapy.

9. Local Cancer Agency Counselling
   Your local Cancer Agency may offer no-cost counselling services.  You or a family member can arrange a free consultation with a counsellor in person, over the phone, or virtually. They can offer help with navigating your new situation, your emotions, problems in relationships, and practical and financial concerns. They can also provide assistance and information about transportation, financial and community services and resources, and other helpful resources and tips. The service is available to you and your family during your treatment and up to 18 months afterwards.  The BC Cancer Agency Patient & Family Counseling has psychiatrists/psychologists who can help with anxiety, insomnia and changes in your personality or thoughts. The contact number for Patient & Family counseling at BC Cancer Vancouver is 604-675-8001 ext 8001.
10.  Options to Preserve Fertility

Discuss with your oncologist steps and precautions to preserve fertility before, during and after treatment.  Suggest contacting the Power of Hope Program for information, support and potential financial assistance.

Options to Preserve Fertility before Treatment for Females

• • • • Embryo freezing
      • Egg freezing
      • Ovarian tissue freezing
      • Ovarian transposition
      • Gonadotropin-releasing hormones (GnRHs)

Options to Preserve Fertility before Treatment for Males

• • • • Sperm banking (cryopreservation)
      • Electroejaculation
      • Testicular sperm extraction (TESE)
      • Testicular tissue freezing
      • Radiation testicular shielding

Local fertility clinics:

• • Genesis Fertility Centre
  • Olive Fertility Centre
  • Pacific Centre for Reproductive Medicine

11.  Local Cancer Agency Dietitian

Your local Cancer Agency may have a dietitian on staff.  You can also meet or speak by phone or virtually with a registered dietitian to help you with eating and nutrition challenges during your cancer treatment at VGH 604-875-4111 Ext. 672013 or speak with an oncology dietician at Healthlink BC (dial 811). 

12.  Local Cancer Agency Physiotherapy/Pain Management
Your local Cancer Agency may offer no-cost telephone or video appointments with a physiotherapist who can prescribe home safety equipment and individualized exercises to help you with movement, fatigue, balance and more. You can also speak to an oncology exercise psychologist regarding pain and symptoms management or other physical problems at Healthlink BC (dial 811)

4 to 6 WEEKS PRE-TRANSPLANT – TESTS

You will receive a follow-up call from your designated Nurse navigator to discuss in more detail the stem cell transplant process and review your upcoming appointments.

Note: These tests will be done at your local clinic or hospital whenever possible.

1. Nurse Navigator follow up call
   You will receive a follow-up call from your BMT Nurse Navigator to review your appointment schedule and discuss what to expect as you prepare for your transplant.  They will provide you with a booklet listing all the specialized myeloma tests (what, where, when etc.) required prior to your transplant.  Nurse Navigators are a great resource to discuss any questions or concerns.  Please tell them if you are out of town and use any mobility aids, raised toilet seats, bedrails or other assistive devices.  They will help you get in touch with the physiotherapy team to arrange for this equipment during your transplant. 

2. Bloodwork
   Your blood will be tested many times throughout the assessment, transplant, and recovery process.  Blood tests reveal how far it has progressed, and whether the treatment is keeping it under control.  The most basic blood test is called ‘Complete Blood Count’ (CBC), where the following components are measured:

• • Red Blood Cells – shows whether there are enough red blood cells to properly transport oxygen to your tissues
  • White Blood Cells – shows whether there are enough white blood cells for your immune system to protect you against diseases and infections
  • Platelets – indicates whether there are enough platelets for your blood to clot properly
  • Albumin – shows whether your liver is functioning correctly, and if not, how serious the problem is
  • Creatine or creatinine– reveals your kidney function
  • Glucose – measures the amount of glucose or sugar in your blood, which can be high if you’re taking certain medications (i.e. dexamethasone or prednisone) or if you have diabetes or pre-diabetes
  • Calcium – too much in your blood can be a sign of bone breakdown 

Specialized myeloma blood tests consist of:

• • Serum Protein Electrophoresis (SPEP) – show whether there is an unusual amount of one immunoglobulin (antibody) in the blood. With myeloma, you will probably have a higher than normal level of a specific immunoglobulin, which shows up on a blood test as a monoclonal protein, also called M-protein, paraprotein, M-spike or M-peak.  For IgA myeloma, the M-protein component is often low, so occasionally, the total IgA immunoglobulin level is monitored instead of the actual M-protein
  • Immunofixation (IFE) – can reveal whether or not you have a monoclonal protein, as well as the type of myeloma protein
  • Quantitate Immunoglobulin Test – measures the total amount (both normal and abnormal) of three different kinds of antibodies – immunoglobulin (Ig) G, A and M
  • A Serum Free Light Chain Assay (sFLC) – can measure the amount of kappa and lambda light chain in the blood
  • Beta-2 microglobulin – the blood should be tested at the time of diagnosis to determine the level of beta-2 microglobulin found on the surface of many cells
  • Blood Urea Nitrogen (BUN) – a test used along with the creatine or creatinine to evaluate kidney function

3. Heart Test
   Heart tests such as Electrocardiogram (ECG), Radionucleotide Ventriculogram (RVG) will be performed to ensure your heart is healthy pre-transplant.

4. Lung Test
   Lung tests such as Pulmonary Function Test (PFT) and chest x-ray will be performed to ensure your lungs are healthy pre-transplant.

5. Kidney Test
   Kidney tests such as a 24-hour urine collection will be performed to confirm kidney function pre-transplant.

6. Dental Check-Up
   Extensive dental evaluation is required before the transplant since the oral cavity and teeth are a potential site of infection.  Therefore, all cavities, cracked teeth, root canals, and other issues must be fixed before a transplant or serious complications can occur.

2 to 3 WEEKS PRE-TRANSPLANT – VGH APPOINTMENTS

An IV catheter called a Hickman Line will be inserted in your upper chest to reduce the number of needle pokes and help make your treatment more comfortable.  The Hickman Line is only used for transplant and bloodwork during recovery, not for stem cell collection.  You will tour the hematology apheresis unit (HAU), where your stem cells will be collected.

Note: All consultations are on the 6th Floor Leon Blackmore Pavilion, Vancouver General Hospital. 

1. In-person consultation with BMT health care team
   To help you prepare for your upcoming transplant, you will meet with members of your BMT health care team for personalized teaching. A stem cell transplant can affect every part of your normal routine. Knowing what to expect and how to plan for it will help make the transplant process easier for you and your family.

2. IV Catheter Insertion
   Before your transplant, you will need a catheter (Hickman Line) inserted using a local anesthetic.  It is a flexible tube that is put into a large vein in your neck.  The other end sits outside of your chest.  Having an IV line may sound scary, but it will make your stem cell transplant experience much more comfortable.  One complaint is that the area around the insertion may get red and itchy. 

The Hickman Line is used for:

• • High dose IV chemotherapy
  • IV fluids to stay hydrated
  • Draw blood for tests
  • Give back your stem cells on the transplant day
  • Give blood transfusion and medication, as needed

The Hickman Line insertion occurs at the VGH Jim Patterson Pavilion, Radiology Unit Ground Floor. 

Learn more about “Caring for the Hickman line” in next section below.

3. Hematology Apheresis Unit (HAU) Visit – the Stem Cell collection machine
   The nurses in the Hematology Apheresis Unit will meet with you to check your veins and teach you about the stem cell collection process. Checking your veins is important because the apheresis machine needs a certain amount of blood flow to work properly.

During your visit to the apheresis clinic, you will also receive your prescription for G-CSF.

The HAU is located on the 6th Floor Leon Blackmore Pavilion, Vancouver General Hospital. Turn right once off the 6th-floor elevators.

4. Visit the Thrombosis Clinic (if required)
   This appointment is only needed if you are currently using a blood thinner (i.e. warfarin, heparin, etc.). The thrombosis clinic doctor and nurses will teach you how to manage your blood thinner through your treatment.

5. BMT Social Worker consultation
   BMT social worker will discuss how having a transplant can affect your family, coping, living arrangements, employment, finances and other practical matters.  Please be open with them about any concerns or issues you and your family may be having.  They will provide a list of government services offered free of charge to assist you during this journey.

6. BMT Dietitian Consultation

Chemotherapy is very hard on the body which can affect your appetite.  You will meet with the BMT dietitian to discuss how to prepare for your transplant and manage side effects through your diet and food choices.

1 to 2 WEEKS PRE-TRANSPLANT – STEM CELL COLLECTION

You will be given a daily injection of G-CFS, which encourages stem cell growth from your bone marrow to your bloodstream over 4 to 5 days before stem cell collection.  Stem cells will be collected over 1-2 days using an apheresis machine located at the Hematology Apheresis Unit (HAU).  Discuss with your oncologist the option of collecting and freezing enough stem cells to support an additional transplant for the future, if required.

1. Injections/medication to move stem cells into the bloodstream
   Your healthy stem cells must be collected from your blood before you can receive the high-dose chemotherapy that will damage your healthy cells. Since stem cells live in your bone marrow, you will receive injections/medication to move these stem cells into your bloodstream. This is a type of medication called G-CSF (granulocyte-colony stimulating factor). The G-CSF medication used is called Filgrastim (Grastofil® or Neupogen®).  Note that moving stem cells from your bone marrow into your bloodstream is called “mobilization’.

Some answers to questions you might have:

• What Should I Tell My Doctor before starting G-CSF?
  Other drugs may interact with G-CSF. Tell your doctor if you are taking any other medications, even if you only take them sometimes. This includes over-the-counter drugs, naturopath/herbal remedies, vitamins, teas, etc.

• How is G-CSF Given?
  G-CSF is an injection under the skin using a small needle. Daily injection of G-CFS is given over 4 to 5 days prior to stem cell collection.  You may feel a slight stinging sensation at the injection site while it is given. Any pain or redness you notice after the injection should go away soon. If you see a “bump” at the injection site, please do not rub it. The bump will often go away within a few hours. If the bump persists for more than a few hours, contact the Hematology Apheresis Unit at 604-875-4626 Monday to Friday 8 am-5 pm:

• Where will I receive my G-SCF Injections?
  Your Nurse Navigator will book an appointment to give you your G-CSF in the Hematology Apheresis Unit (HAU) or the Leukemia/BMT Daycare Unit. Both are located on the 6th floor of the Leon Blackmore Pavilion of Vancouver General Hospital (VGH).
  If you prefer and if possible, you may have your injections given at your family doctor’s office or a walk-in clinic near your home. Patients, family members or friends in the health care field can deliver these injections if they have been trained to do so (VGH does not provide this training).
• How much does G-CSF cost?
  G-CSF is a very expensive prescription medication and is not paid for by the Vancouver General Hospital or BC Cancer for the autologous/myeloma transplant patient. The cost of G-CSF is dependent on the dose required; one course of treatment is between $2,000.00 and $3,000.00.

Your Nurse Navigator will be your contact person regarding any G-CSF drug coverage issues.  Some facts to be aware of:

• You should be registered for BC Fair PharmaCare ASAP. You can contact Fair PharmaCare (1-800-663-7100) to clarify your benefit plan and medication coverage. If you have already reached your deductible amount with Fair PharmaCare in the current calendar year, the cost of your G-CSF may be significantly reduced.  Nurse navigators can assist you with the paperwork. 
• If your income has reduced since your diagnosis (more than a 10% change in income in the last two years), you may be eligible for an income review and reduced deductible through Fair Pharmacare. Contact them for details.
• Contact your extended health provider directly to determine if G-CSF is covered under your plan. The Grastofil® drug ID number is 02441489 or 02454548, depending on the dose you receive.

Depending on your extended health plan and your Fair PharmaCare deductible, you may need to pay for some of this cost “out-of-pocket.” Your Nurse Navigator will register you for the “Answers Program.” This program will contact you regarding your coverage and will help cover some of your out-of-pocket costs

• What are the Side Effects of G-CSF?
  • Generally, G-CSF is well tolerated. Some people may experience:
  • Bone pain, especially in the lower back, hips or leg bones.
  • Headache
  • Fatigue (feeling tired)
  • Flu-like symptoms, like muscles soreness, aches, and a low fever

Contact the Hematology Apheresis Unit (HAU) immediately if you experience the following symptoms after the procedure at 604-875-4626 Monday to Friday 8 am-5 pm.  If after hours go to ER:

• • Shortness of breath that starts suddenly
  • Blood in your urine
  • Pain or burning when you pass urine after mobilization chemotherapy
  • Fever of 38°C or higher
  • Chills or shakes
  • Yellow or green mucous after you cough

These symptoms may mean a possible infection or side effect from the mobilization therapy and should be treated as an emergency.

2. Stem Cell Collection
   You will receive high-dose chemotherapy the day before your stem cell transplant.  Since this high-dose chemotherapy destroys the normal bone marrow in addition to the myeloma cells, stem cells are collected/saved from you a few days before the stem cell transplant and returned/infused back in your body on the day of the stem cell transplant (DAY 0). 

Your stem cells are collected by a procedure called apheresis (“a-fur-REE-sis”) in the Hematology Apheresis Unit (HAU) at Vancouver General Hospital. During the collection, your blood will be circulated through an apheresis machine that will separate and collect the stem cells. This machine safely and painlessly collects stem cells from your blood and returns the rest of your blood to you. Stem cell collection is a simple procedure that involves inserting a line into a vein in each arm.  If vein access is difficult, then the Hickman line is used.

Stem cells collection/mobilization occurs over 1-2 days.  The apheresis process can take up to 4 to 6 hours from start to finish.

How to prepare for your stem cell collection day:

• • Drink plenty of fluids and avoid coffee and tea
  • Eat calcium-rich foods for breakfast – milk, yogurt, cheese, calcium-fortified cereals, calcium-fortified orange juice etc.
  • You may wish to bring a lunch or snacks
  • You will need to stay in bed during the entire process, so use the toilet beforehand.
  • Wear comfortable clothes, loose clothing
  • Bring your own music, video, audiobook or podcast to listen with headphones. Do not bring reading material because your arms must stay still during the procedure.
  • Once the procedure has started, your friend or family member can stay with you.

During the collection, you may feel:

• • Light-headed or dizzy which is due to your blood going through the machine
  • Tingling in your lips, fingers and toes, and cramping in your hands and feet. A blood thinner is used to prevent your blood from clotting while it circulates in the apheresis machine. Tingling is a side effect of this medication. Calcium can be added to your intravenous (IV), and these symptoms should fade.

Tell the nurse if you feel any of these or any side effects, so they can help you feel more comfortable.

Note: The stem cell collection is usually performed at the Hematology Apheresis Unit (HAU) or the Leukemia/BMT Daycare Unit. Both are located on the 6th floor of the Leon Blackmore Pavilion, Vancouver General Hospital.

3. Lab Confirmation re: Stem Cell Collection
   At the end of the day, the bag of stem cells that has been collected is sent to the lab, where the stem cells are counted. You will be asked to wait for the results. If not enough cells were collected, you will be asked to return the next day to repeat the process. This is normal, and there is no need for concern.

DAY 0 – STEM CELL TRANSPLANT

On the day of your transplant, often referred as DAY 0, you will be given a single high dose of a chemotherapy drug (Melphalan) at the BMT Daycare clinic.  The following day your stem cells will be reinfused through your IV catheter. This process is similar to a blood transfusion.

1. High-dose Chemotherapy – one day before Stem Cell Transplant
   High-dose chemotherapy, sometimes called conditioning, generally involves melphalan (Alkeran) given intravenously.  The goal of the treatment is to kill as many remaining myeloma cells in your bone marrow and your body as possible.  This high-dose therapy may be the strongest treatment you will receive.  In the process, it will destroy the blood-producing cells in your bone marrow, which means your blood count levels will drop.

When you arrive at BMT Daycare for your high-dose chemotherapy, the nurses will:

• • Connect you to intravenous (IV) fluids. These fluids will run for 2 hours before and after your high-dose chemotherapy to protect your kidneys.
  • Give you two pill medications to prevent feeling sick (nausea and vomiting).
  • Run your Melphalan chemotherapy through your Hickman Line/catheter in 1-2 bags over 30-60 minutes each.
  • Give you ice chips to suck on before, during and after your chemotherapy to help with mouth sores.
  • Give you a hard candy to get rid of the potential odd taste in your mouth like canned corn or garlic. The candy also disguises your bad breath caused by the preservative in the bag of stem cells. Interesting fact – everyone in the room can smell your bad breath except you!
  • Your doctor and BMT nurse will stay by your side during the entire procedure.

After this procedure, it is important to look after yourself. This will help reduce the risk of infection and help you feel more comfortable. Always tell your health care team about any side effects or symptoms you notice, even if they seem minor. They count on you to let them know how you’re feeling. When you mention a side effect early, it can often be managed better, and there is less chance of complications. Remember that everyone is different – it is normal for some people to have more side effects than others.

Some common side effects:

• • Nausea and vomiting
  • Diarrhea
  • Infection and fever
  • Mouth sores or dry mouth
  • Appetite loss and taste changes
  • Bleeding and bruising
  • Fatigue and malaise – feeling tired and unwell
  • Hair loss or thinning
  • Skin changes
  • Trouble concentrating and memory changes

Note: All British Columbia and Yukon myeloma patients receive high-dose chemotherapy one day before Stem Cell transplant at Vancouver General Hospital BMT Daycare unit located on the 6^th floor of the Leon Blackmore Pavilion.  This step takes approximately 6 hours at the Daycare Unit, so it is helpful to bring snacks and materials to occupy your time.

2. Stem Cell Transplant/Infusion – DAY 0
   Since high-dose therapy also destroys healthy blood and stem cells in your bone marrow, the bone marrow needs to be infused with your previously collected stem cells.  This occurs the day after high-dose chemotherapy through an intravenous catheter/Hickman Line “reinfusing” your own stem cells that were collected back into your body.  This infusion is often referred to as the “transplant” which resembles a blood transfusion and not removal of an organ.  Infused stem cells travel through the bloodstream to the bone marrow, where they begin to produce or “jump-start” new blood cells, a process sometimes called “engraftment.”

The day of your stem cell transplant is called “DAY 0”.  From “DAY 0” onward, your BMT health care team will count each day as “DAY 1”, “DAY 2”, “DAY 3”, and so on.

What will happen on my stem cell transplant day?

• • They will give you an IV steroid medication in the morning called hydrocortisone over 15-20 minutes. After the hydrocortisone is complete, you may choose to rest on the unit or go for a walk until your nurse asks you to return. Eat a light lunch to avoid feeling nauseated.
  • Your stem cell transplant will happen in the early afternoon.
  • One hour before your transplant, you will be given IV hydrocortisone, IV
    Benadryl® and 2 Tylenol® tablets.
  • When ready to start the transplant (usually around 2 pm), your stem cells will be thawed (unfrozen) in a warm water bath.
  • Once your stem cells are thawed, the bag will be connected to your IV line and given back to you like a blood transfusion.
  • A nurse and doctor will be by your side during the reinfusion of your stem cells.
  • Each bag of stem cells will take roughly 15 to 45 minutes to be reinfused.

During stem cell re-infusion:

• • You will be sitting up comfortably in a hospital bed. Your family and friends can be in the room to celebrate and support you if COVID protocols allow.
  • You may feel nervous or excited or both. This is normal.
  • You may have an odd taste in your mouth like canned corn or garlic. This is from the preservative in the bag of stem cells. You will be given a hard candy to suck on through the transplant to help get rid of this odd taste and bad breath.
  • You may feel a tickle or tightness in your throat or chest. This is normal, and you will feel better if you breathe deeply and cough.
  • You may feel nauseated (feeling of having to throw up).
  • You may feel cold. This feeling is caused by the thawed stem cells.
  • Your doctor and BMT nurse will ask you every 5-10 minutes how you are feeling. Be honest and don’t hold back.

After your stem cells have been re-infused (after the transplant):

• • You will feel sleepy from the IV Benadryl® that was given.
  • You will stay in the daycare unit for two more hours to monitor vital signs.
  • Your urine may be red for a few hours after the transplant. This should stop after
    24 hours.
  • The canned corn taste may stay on your breath 24 hours after the transplant.
  • They will not discharge you if you show or mention any serious symptoms. If there are any serious complications you will be admitted to VGH Jim Pattison building on the 15^th or 16th floor.

Note: All British Columbia and Yukon myeloma patients undergo their Stem Cell Transplant at Vancouver General Hospital BMT Daycare unit located on the 6^th floor of the Leon Blackmore Pavilion.  This step takes roughly 8 hours at the Daycare Unit, so it is helpful to bring snacks and materials to occupy your time.

DAY 1 TO 21 – BLOOD COUNT RECOVERY (Engraftment)

For approximately three weeks post-transplant, you will visit the VGH BMT Daycare unit which is located on the 6^th floor of the Leon Blackmore Pavilion, every 1 to 3 days to check your blood counts.

Usually, it takes 3 weeks for blood counts to recover post high dose chemotherapy and stem cell transplant; however, this timeline can vary from person to person.  During that time, you will require 24-hour caregivers, record your condition daily and visit the VGH BMT Daycare Unit every 1 to 3 days.  You will also need to go over your home care instructions with your nurse and review your medication list with the BMT pharmacist. 

Note that myeloma and myeloma treatment create a weak immune system making you very susceptible to infection.  Every precaution must be taken.  Should you feel unwell at anytime don’t wait to call your local BC Cancer Agency or VGH BMT Daycare at 604-875-4073 ext. 1 Mon-Fri 8am-7pm, Sat-Sun & Holidays 9:00am-6pm or after hours at 604-875-4343.  BC Cancer Vancouver facility can also accommodate in-patients.  Please call 604-877-6000 and follow the prompts.  As a last resort go to your nearest emergency room. 

1. DAY 1 to 6 – blood count drops to low levels
   During the first few days post stem cell transplant, your blood count will drop to low levels due to the high-dose chemotherapy.  You may feel somewhat normal during this time; however, your immune system has been weakened, so all precautions must be taken to avoid infections. 

2. DAY 7 to 13 – blood count at the lowest levels
   After a week or so post-transplant your blood counts are at their lowest level, and you will feel the most unwell from the side effects.  Every precaution must be taken to avoid infections during this window when your immune system is compromised.  Limit contact with people and even pets.  You will also feel weak, and susceptibility to loosing your balance is not uncommon.  Be very careful in the washroom especially when coming out of the shower.

What are the possible side effects of high-dose chemotherapy?

Different people react differently to the stem cell transplant process; don’t feel discouraged if you meet someone who has had a different experience than you. Short-term side effects (those that you can expect in the first 1-2 weeks after):

• • low white blood count – this increases your risk of infection
  • low platelet count
  • fever, chills and infections
  • nausea and vomiting (anti-nausea medication will be prescribed)
  • fatigue (feeling tired)
  • hair loss
  • loss of appetite (do not feel like eating) and taste changes
  • mouth sores and sore throat – this can make it hard for you to eat or drink
  • diarrhea (frequent runny stools)

If there are complications you will be admitted to VGH Jim Pattison building on the 15th or 16th floor.

Note: All British Columbia/Yukon myeloma patients undergoing a stem cell transplant are considered outpatients unless complications require hospitalization. That means that you will be discharged the day of the transplant.  If you are out of town, you must stay near Vancouver General Hospital (within a 1-hour drive) during the blood count recovery until discharged from the BMT Daycare Unit, which is located on the 6th floor of the Leon Blackmore Pavilion, VGH. 

For more information visit our  “out-of-town patients guide” on this website. 

3. DAY 14 to 21 – blood count goes up
   As your blood counts return to normal levels, you will start to feel better again.  As mentioned, these timelines vary from person to person, so do not get discouraged if someone else recovers more quickly than you, even if you are younger, healthier and stronger.  You will also feel weak and could lose your balance. Be very careful in the washroom especially when coming out of the shower.

What are the possible side effects from high-dose chemotherapy?

Side effects that can last longer than two weeks:

• • fatigue
  • shortness of breath with physical activity—this will improve with gradual
    increases in simple exercise such as walking
  • taste changes
  • nausea, diarrhea

4. Bone Marrow Transplant (BMT) Daycare visit every 1 to 3 days until discharged
   During the blood count recovery, you will have BMT Daycare visits every 1-3 days until your blood count recovers. The BMT Daycare unit is located at Vancouver General Hospital on the 6^th floor of the Leon Blackmore Pavilion.  Each visit will vary in length, depending on your blood tests and symptoms that day. Your stay can last from 2-6 hours, so bringing snacks/lunch and materials to occupy your time is helpful.

What to expect during BMT Daycare visit:

• • Blood work will be taken from your Hickman IV line to check among other things:
    • White blood count – normal levels are 4 to 11
    • Red blood count – normal levels are 120 to 180
    • Platelet count – normal levels are 150 to 400
    • Neutrophils count – normal levels are 2 to 8
  • These numbers will be written down on a small piece of paper and given to you by the nurse for your records. We suggest keeping a log of those results. 
  • Vital signs will be taken – blood pressure, heart rate, oxygen levels, weight, temperature.
  • A hematologist/oncologist, doctor or nurse practitioner will visit you to ensure your recovery is going well and arrange for extra tests if needed.
  • You will be closely monitored for fever, infection and other complications.
  • If needed, you may receive IV fluids, blood and platelet transfusions. Medications for treating symptoms will be provided if necessary (i.e. antibiotics, anti-nausea, etc.).
  • The BMT social worker, physiotherapist, pharmacist and dietitian will visit you.
  • Note that the BMT health care team is there to support you. Write down any questions in advance to ask during your BMT Daycare visits.

What should I do every day?

• • Drink lots of water.
  • Check your temperature twice a day. Check it more often if you are feeling unwell. Call immediately, day or night, if you have a fever (38°C or higher) or feel unwell:
    • VGH BMT Daycare at 604-875-4073 ext. 1 Mon-Fri 8am-7pm, Sat-Sun & Holidays 9:00am-6pm or after hours at 604-875-4343.
    • BC Cancer Vancouver facility can also accommodate inpatient. Please call 604-877-600 and follow the prompts. 
    • As a last resort go to your nearest emergency room.
  • Take your medications. You will be given a list of medications and when to take them.
  • If you feel like it, you can do many of your usual home activities like going for walks, reading, listening to music, and having limited family and friends visits ideally outdoor to limit infection, assuming they are healthy.
  • Chemotherapy side effects can make you feel tired, so try not to do too much. Some days, you may want to spend the day resting in bed.
  • Your 24-hour caregiver can help prepare your meals, keep track of how much you are drinking, take your temperature, and do anything else you need help with.

What should I do if I have an issue or questions while at home?

• • Write down any questions you may have and bring them to your next appointment.
  • If you are unsure about a symptom you’re having or have an issue that needs attention, contact your BMT health care team 604-875-4073. A nurse can address your questions over the phone or after hours call 8-1-1, which is a free provincial health information phone line in British Columbia. By calling 8-1-1, you can speak to a health service navigator who can connect you directly with a registered nurse

5. BMT Pharmacist Consultation
   One of the knowledgeable BMT Pharmacists will meet with you during one of your BMT Daycare visits to review your drug regime and discuss side effects.  Bring any written questions and a list of any side effects to all your BMT visits to discuss with your BMT health care team member.

6. BMT Physiotherapist Consultation
   A BMT physiotherapist will meet with you during one of your BMT Daycare visits to discuss what you should or should not do regarding increasing strength   It is important to continue to exercise to maintain your strength and circulation and to help lessen the side effects of your treatments.  

Learn more about exercising post stem cell transplant below on this page.

7. Hair loss or thinning
   High dose chemotherapy will cause your hair to thin and eventually fall out, usually 2 to 3 weeks after the high dose chemotherapy/transplant (DAY 0). Your hair will grow back 3-6 months post-transplant, but the texture or colour may be different when it returns.  For those not used to a bald head it will take time for your body to adjust.  During the day you will need to protect your head against the cold or sun.  Do wear sunscreen at all times if not covered.   You’ll feel cold when sleeping.  Try sleeping with a thin cotton hat like a painter’s hat.

What to do prior to loosing your hair:

• Brush your hair gently using a soft hairbrush.
• Consider cutting your hair short before transplant. Longer hair comes out more easily and makes hair loss more noticeable.
• Wear soft hats, head scarves or wigs to keep your head warm and protected.
• Sleep with a thin loose cotton hat like painter’s hat.
• Type “hair loss” on the BC Cancer website www.bccancer.bc.ca for more information on hair loss resources.

Learn more about dealing with hair loss and thinning in “side-effects” section below on this page.

STEM CELL TRANSPLANT FOLLOW UP

You will have Follow-up visits with your BMT hematologist/oncologist to monitor your blood counts and recovery and. Your IV catheter will be removed.

1. Bone Marrow Transplant (BMT) hematologist/oncologist – follow up appointment
   You will be scheduled to see your BMT hematologist/oncologist in 3-4 weeks post stem cell transplant. They will discuss any symptoms you’re still having and arrange for follow-up bloodwork and appointments during this visit. They will also discuss maintenance treatment, if required, re-vaccination schedule, and transferring your care to your primary cancer doctor. 

It is strongly recommended to have your caregiver present at all your hematologist/oncologist appointments to write down what is said for future reference.  You should also arrive with a list of written questions to ask and discuss with the doctor. 

2. Catheter removal (Hickman Line)
   Your catheter/Hickman Line will be removed once your blood counts have recovered and you are discharged from the BMT Daycare unit.  Removing a catheter/Hickman line is a safe and short procedure done at the bedside on the BMT Daycare unit.  Although uncomfortable, it is not painful.

Tip: Take a Tylenol before the procedure.

3. Bone Marrow Transplant (BMT) Daycare Unit discharge (when appropriate)
   Once your blood counts have recovered, your visits to the BMT Daycare unit will be complete, and out-of-town patients may return home. 

How will I feel after my blood counts have recovered?

• Even after your blood counts recover, you will still feel tired. Feeling tired can persist for many months after the transplant. The best way to fight fatigue and low energy is to slowly increase the amount of activity you do every day.
• You may also have other symptoms, such as:
  • nausea and sometimes vomiting
  • changes in taste
  • diarrhea or constipation
  • hard time sleeping
  • poor appetite
  • difficulty concentrating

These symptoms are common and will improve slowly, although the timeline will vary from person to person.  You can get medications that may help settle uncomfortable symptoms. It is important to tell your health care team of any symptoms.  You may need to keep taking medications to control your symptoms (such as nausea) until your symptoms improve.

4. Referral back to your primary cancer doctor
   Depending on where you live, you may be transferred back to your primary cancer doctor.  Your BMT hematologist/oncologist will discuss the process and timing of the transfer.

3 to 6 MONTHS POST-TRANSPLANT – RECOVERY

You will have monthly visits with your local hematologist/oncologist.  Maintenance drug therapy may start.  You will receive a schedule to be revaccinated.

1. Monthly follow-up visits with your primary cancer doctor
   Once you’ve been discharged from the BMT Daycare Unit at VGH, you will return to your primary cancer doctor or local hematologist/oncologist.  They will have received or been copied with all your results and progress during your visits at VGH.  Initially, expect monthly appointments with the doctor as well as monthly bloodwork. 

2. Maintenance drug therapy (if recommended)
   Depending on the transplant result, maintenance therapy is commonly recommended post-transplant.  Common maintenance treatment includes Revlimid/Lenalidomide, Dexamethasone and Darzalex/Daratumumab.
   For more information visit “Maintenance Therapy” section below on this page.
3. Bone strengthener/ Bisphosphonate therapy (if recommended)
   It is standard treatment to prescribe monthly intravenous bone strengthener/Bisphosphonate therapy post-transplant for at least two years. The drugs most used are Pamidronate (Aredia) and Zoledronic Acid (Zometa).  This treatment has been shown to prevent further bone damage and events related to weakened bones such as fractures, hypercalcemia (high calcium levels), and spinal cord compression in multiple myeloma patients.  Common side effects are flu-like symptoms.

4. Re-vaccination (if recommended)
   While infection remains the leading cause of post-transplant complications, protection against vaccine-preventable diseases remains a priority. With high-dose chemotherapy, the loss of pre-transplant immunity is inevitable. Your hematologist will give you a letter with a vaccination schedule that includes all childhood and COVID19 vaccines to begin once your blood count return to acceptable levels. 

5. Hair growth
   Your hair will grow back 3-6 months post-transplant, but the texture or colour may be different when it first returns.  These changes may or may not be permanent.  Until full growth occurs, it is recommended to keep the head warm with a head covering, and protect against the sun using sunscreen.  

6. Recovery at Home
   Generally, it will take roughly 3-6 months post-transplant for you to return to a relatively normal lifestyle, but this timeline varies from person to person. During your recovery time you must stay vigilant regarding being exposed to any germs or viruses.  Keep visitors to a minimum until your immune system is stronger. Losing your balance is not uncommon so be very careful in the washroom especially when coming out of the shower. Adjusting to life after your stem cell transplant can feel like a slow recovery. You will likely still have good days and bad days. It will take time for you to step back into your roles, such as being a parent, spouse, employee and friend again. Be patient with yourself as you adjust and recover.

   There are a few things that you should avoid while recovering:

• • Smoking and drinking alcohol and beer (e.g., homemade or microbrew).
  • Products that contain alcohol (e.g. perfumes and some creams).
  • Eating raw foods such as (among others):
    • Seafood/fish (e.g. sushi, sashimi, oysters, clams) or meat (e.g., steak tartare)
    • Nuts, honey, grains, rough-textured fruits (e.g., raspberries) and sprouts (e.g., bean, alfalfa)
    • Cured, smoked or pickled deli meats and fish
  • Eating uncooked or undercooked foods such as (among others):
    • Eggs or foods that might contain them (e.g., some salad dressings)
    • Non-refrigerated cream and mayonnaise-based foods (e.g., tuna/macaroni salad, pudding, custard)
    • Cultured foods (eg, yogurt, kimchi, sauerkraut, tempeh, miso)
  • Eating unpasteurized foods, drinks and cheeses such as (among others):
    • Milk, eggs, honey, juices or teas (e.g., kombucha)
    • Soft cheeses (e.g., brie or feta), cheeses with mould (e.g., blue cheese) or fresh cheeses (e.g., queso fresco/blanco)
  • Drinking water from a well or swimming in a lake.
  • Large crowds (e.g., parade, party, busy mall).
  • Staying away from construction sites.
  • Eating at restaurants for the first six months after your transplant.
  • Cleaning litter boxes, bird cages or fish tanks for one year after your transplant.
  • Gardening (e.g., mowing, raking) for one year after your transplant.

7. Return to work (if desired)

Returning to work is a common source of stress for people after their transplant. Generally speaking, people can usually return to work six months after stem cell transplant.  When you feel ready to return to work, it is best to do it slowly and over time.  Going back to work helps get you back into a more “normal” routine, but you may still be thinking about your transplant experience and will need to balance your work schedule with your post-transplant medical visits.

You may also be dealing with side effects, such as:

• • Fatigue
  • Feeling anxious or worried about returning to work
  • Low energy
  • Changes in your memory and concentration (also called “chemo brain”)
  • You may have troubling thoughts about family, relationship issues or financial concerns
  • Weight gain, with a “moon face” appearance

For more information visit “Maintenance Therapy” section below on this page