Myeloma Treatment

MYELOMA TREATMENT

Myeloma is a very complex disease with many different types of myeloma. What works for one patient may not work for another, and there is no such thing as “one treatment fits all.”  However, treatment for myeloma is increasingly being tailored to meet the needs of individual patients. A stem cell transplant may be an option for many myeloma patients, but not for all. Therapies or drugs are commonly used in different combinations, often comprising three or four different drugs, referred to as ‘triplets’ or ‘quads’.

A number of new and emerging treatments are becoming available in Canada to treat myeloma. Since 2010, successful clinical trials have given way to new classes of drugs called monoclonal antibody therapy that are more targeted, such as Daratumumab (Darzalex) and Isatuximab (Ninlaro). Since 2020, there has been tremendous advancement in genetically modified immune cells therapies such as CAR-T and bispecifics.  Chimeric antigen receptor (CAR-T) cell therapy is an immune treatment that uses the body’s own immunity to destroy the myeloma cancer cells.  CAR-T works by extracting your immune cells know as T-cells and genetically modifying them in a lab before returning them in your body.  As of April 2022 the procedure is performed only once with an estimated cost of CAD 1 million.  April 2022 the Alberta Health Services & the University of Alberta announced a CAR-T trial using in-house constructed therapy reducing the cost to around CAD 400,000.  This great news can only mean increase accessibility for us myeloma patients to this very promising treatment.  Bispecifics  monoclonal antibody is the latest class of therapy where cells are genetically modified and constructed in a laboratory.  Unlike CAR-T therapy, no T-cells are extracted from your body.  This is why bispecifics is sometimes called ‘off-the-shelve’ therapy.  Although the protein acts differently to attack the myeloma cells, the procedure is similar to the CAR-T.  It is too early to tell if the response rate is better than the CAR-T but what is apparent is the cost will be less.  Many clinical trials are underway using both therapies.  


These treatments may one day replace stem cell transplants.  Researchers and physicians are very optimistic that a cure for myeloma may be within reach!!

According the “Best of ASH (American Society of Hematology) 2021 to 2022 presentation:

    • Over 90% of patients respond to current therapies
    • Average first remission is 4 years or more
    • In 2021, average survival is at least 7 to 10 years
    • Some patients live over 15 to 20 years
    • New therapies are constantly improving the outlook

The terms BMT (Bone Marrow Transplant) and SCT (Stem Cell Transplant or peripheral blood stem cell transplant) are sometimes used interchangeably in the blood cancer world and at VGH, but they refer to two different types of transplants.  The difference depends on where the stem cells are taken from. In bone marrow transplants, the stem cells are taken from the bone marrow. In peripheral blood stem-cell transplants, which is what myeloma patients undergo, the stem cells are taken from the circulating blood. Peripheral blood stem-cell transplants are now more commonly performed than bone marrow transplants, as the procedure is easier, and the body is able to regenerate new stem cells faster.


Other common terms in the blood cancer world are “autologous” and “allogeneic” transplants. Myeloma patient undergo an “autologous” transplant which means using their own stem cells.  Other blood cancers, such as leukemia, use a donor’s stem cells and the procedure is called an “allogeneic” transplant.


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.

Over the last 15 years, treatment options for myeloma have increased significantly with the addition of novel, targeted agents and drugs. However, in Canada, availability for these treatments, as well as drug coverage, varies from province to province. There are currently 14 novel agents 8 of which are approved and funded in BC.  The process of finding this information can sometimes be confusing and overwhelming.  To simplify the provincial drug coverage information you need, Myeloma Canada has designed the Myeloma Drug Access Navigator tool. At a glance, you can see the drugs that are available and covered in each province and territory.


We are extremely fortunate to have many oncologists and hematologists at Vancouver General Hospital (VGH) Bone Marrow Transplant (BMT) department that have helped make VGH a world-renowned facility with experience and capability to undertake clinical trials. For that reason, many pharmaceutical companies turn to VGH to undertake clinical trials for new treatments against blood cancer.  This in turn offers us access to new therapy early on and at no cost.  To understand the implications of participating in a clinical trial scroll down to our ‘Clinical Trial’ section.


Websites listing Canadian clinical trials:

Generic and Brand Name Myeloma Drugs in Canada

We are very fortunate to have some many options in Canada to treat myeloma and the list keeps growing every year.  With a that said, you will need to familiarize yourself with both the generic and brand names of myeloma’s common pharmaceutical drugs since they are often used in conversation with fellow myeloma patients and your healthcare team. Myeloma Canada “Myeloma Drug Access Navigator” website  offers a listing of both generic and brand name drugs available in each province.

Questions for Your Doctor

Be prepared! It is helpful to go to your appointments well prepared with a written list of questions that you have compiled before meeting your specialist.

 

General Myeloma Questions for your physician:

    • Is myeloma one of your specialty fields?
    • How many stem cell transplants have you performed?
    • Do you participate in clinical trials?
    • What type and stage of myeloma do I have?
    • How did you come to this decision?
    • What test results were the key determinants of your diagnosis?
    • What is your assessment of my condition?
    • What is the length of survival for myeloma?
    • Is there a cure?
    • Are there factors in my case which are good or bad?
    • What tests do I need to have performed before we can decide on treatment?
    • Is my myeloma considered high risk or standard risk?
    • Are there any other questions I should be asking?

Myeloma Treatment Planning:

    • What treatment regimen do you recommend, and when should it start?
    • What is my chance of responding to treatment?
    • Are some treatments more toxic then others?
    • How are the treatments administered (intravenously, pills, by injection etc.)?
    • Are there other more effective treatments that are not funded? Not available in Canada?
    • Are there any clinical trials appropriate to my condition which I should consider?
    • What are the side effects I might experience from a transplant or the drugs you are prescribing?
    • If I am taking other medications, vitamins, or supplements, can they interfere with my myeloma treatments?
    • Will side effects from treatment affect my ability to perform work or daily activities?
    • What physical activities can I safely participate in at this time?
    • Before undergoing any treatment option, I would like to get a second opinion? Is that ok? Do you have any recommendations?
    • How successful is this treatment option typically found to be? E.g. expected period of remission?
    • Is there anything I should be doing at this time to prepare myself for the recommended treatment?

GETTING A SECOND OPINION

Deciding on your treatment plan is one of the most important decisions you will ever make, and it can have a significant impact on your quality of life and the chances of a positive outcome. It is important to have a good, honest and trusting relationship with your doctor.  If you feel your personalities are too different, you’re not being heard, or that you may not be able to work with them on a very close level, it can impact your care. Once your doctor has provided you with your diagnosis and a treatment plan, you may wish to have another specialist review the plan by getting a second opinion.

 

While you may have complete confidence in your doctor, it is sometimes helpful to have another expert opinion.

You may feel uncomfortable asking for a second opinion, but you have the right to do so. This is very common, and physicians do not take offense to it.  They just ask to be kept in the loop and to know what you’re considering.  You can ask them who they would recommend for a second opinion. It can take time to get a visit for a second opinion, so for urgent treatment, take this into consideration.

 

The Canadian Medical Association (CMA) Code of Ethics now provides the following guidance to doctors: “Respect your patient’s reasonable request for a second opinion from a physician of the patient’s choice.”

It is highly recommended to seek a second opinion on your diagnosis or suggested course of treatment if you or your family physician are at all uncertain as to the diagnosis or optimal course of treatment.

 

Why is a second opinion important?

Not getting a second opinion may result in an incorrect diagnosis or proceeding with a course of treatment that is not optimal for your condition. You should definitely do this when your primary physician appears to be uncertain about the diagnosis and current best treatment regimen or if you feel uncomfortable for any reason with what you are being advised. Trust your gut!

 

When should you ask for a second opinion?

  • Unsure about the diagnosis
  • Don’t know how well a treatment is going to work
  • Concerned about the potential outcomes and side effects of a treatment
  • The treatment is risky or experimental
  • You would like to explore other options
  • Feel uncomfortable working with your current specialist

In selecting a specialist for a second opinion, you should have input on the choice of specialist and find someone who is a recognized expert in their field, gained through extensive clinical experience with your particular condition, as well as knowledge of current research in the field. Information on this may be obtained from several sources, including your primary physician, other patients or patient resources and organizations, and internet searches.

Consultations can now be conducted by video conferencing with top myeloma specialists in the U.S. for a fee as low as $US 300.

 

How to ask for a second opinion?

  • Explain that you want to be fully informed about your diagnosis, prognosis and available treatment options and would like a second opinion
  • Ask your doctor to recommend someone
  • If you have a specific doctor in mind, ask for a referral
  • If the second opinion closely matches the first, then you can be much more confident with the diagnosis and recommended course of treatment
  • If the second opinion conflicts with the first one, seek to understand why before you decide one way or another, or you may wish to obtain a third opinion.

For additional information, check Healthlinkbc.ca’s “Getting a Second opinion.

OUT-OF-TOWN PATIENT GUIDE

As of January 2022, Vancouver General Hospital (VGH) is the only hospital to offer stem cell transplants for blood cancer patients residing in British Columbia and the Yukon.  Myeloma patients undergoing stem cell transplants at VGH are considered ‘outpatients,’ which means leaving the hospital on transplant day unless there are complications. 

As an outpatient, you will require a 24-hour caregiver during your blood count recovery and until discharged from the BMT Daycare Unit.  Blood count recovery typically takes three weeks post-transplant; however, this varies from person to person.  VGH’s dedicated floor located in the Leon Blackmore Pavilion is called “BMT Daycare”. 

 

Many patients requiring treatment do not live in the lower mainland, and must travel to Vancouver for myeloma treatments.

  • Find accommodation as close to VGH as possible since you will be there every day or every other day for 3 weeks or more.
  • Bring a diary for personal entry, to list questions for your medical team and note your test results (i.e. bloodwork count)
  • You will probably be cold, as your hemoglobin will be very low. Your head may be continually cold due to the lack of hair, so take a toque.
  • Bring layers of warm clothes, fuzzy socks and a cozy blanket or two and even a small heating blanket. If you have access to a clothes dryer, the blanket can be heated up for comfort.
  • You may have long days sitting in a lounge chair at the hospital while you have IV Fluid or Blood Transfusions. It is helpful to have books, playing cards, crossword puzzles, sudoku, phone or video games, knitting, or other crafts. 
  • Download your favorite series, movies or podcast in advance since the wi-fi at VGH can be sporadic.
  • Remember to bring all your charges for your electronic devices.
  • Reach out to the Vancouver Myeloma Support Group if you have any questions
  • The side effects of transplants seem to be different for everyone. It is essential to notify your nurse if you have any side effects.  Do not minimize your concerns, as things can be done to reduce most side effects. There is no benefit in being “a stoic patient.”
  • It can be very challenging to be a caregiver when your loved one is in distress. You will need to provide food, rides, medication, and care.
  • You will likely be exhausted as you will sleep with one ear open for a month. If you have anyone in the city who can give you a break, take advantage of it, but make sure they understand they cannot help if they have any cold or other infection signs.
  • If your patient is comfortable, get out for a walk, a trip to the store, a manicure or a massage or whatever will feel good. You can almost always go out when your patient is having a treatment at the hospital.
  • It is helpful to designate one person to give daily updates so friends/family can call them instead of you. They can also contact people to help if groceries or other things are needed.
  • Take a pen and paper to record any special instructions and write down questions for staff.
  • You or your patient may become quite overwhelmed or emotional at times. Share it with staff- they are incredibly kind, supportive and helpful.

For more information on caregiver tips go to the “Caregiver Support” section on this website

Your VGH health team (BMT Social Worker) can help assist in finding accommodations. 

 

Things to consider:

  • As you will be severely immune compromised, you need a room where you will be separated from others to avoid infection.
  • You will have to travel to Vancouver General Hospital early in the morning at least every second day so consider the travel time & distance.
  • Try to choose lodging that has an elevator and minimum number of stairs
  • Ensure accommodations are within a 60-minute drive from VGH
  • Ask if they have “Medical Rates.”
  • You will not be able to take public transit due to your weak immune system post-transplant
  • Try to find accommodation with a flexible cancellation policy for unpredictable schedule changes
  • VGH and the BC Cancer Center are world-class research & clinical care facilities.  

“No matter how you arrive, whether admitted via air ambulance into ER or as an ambulatory patient, you will receive the best care available.  There are beneficial synergies to be had by having both complexes adjacent to one another.  There are several excellent clinics (Spine clinic, Bone Marrow Transplant (BMT) Clinic, etc.) that exist to support one another and often come into play for MM patients.  I found all patient interactions to be caring, professional, and competent.” (E.M., Kelowna)

 

  • Patients don’t necessarily have to spend ALL their time in Vancouver.  

If patients are healthy enough, have the means to travel, and it doesn’t negatively affect their condition, they might choose to return to their home after their stem cell transplant (or regional center) community.  This might be important for family or financial reasons.

 

  • Vancouver offers a range of lodging and dining alternatives.  

The most convenient lodging is the Cancer Lodge, but other nearby options are also available.

  • The Cancer Lodge is the most economical, closest, and offers meals on site
  • Holiday Inn on Broadway is convenient, private, and has more amenities
  • Airbnb offers flexibility for a range of accommodation options for patients, caregivers and family with the convenience of a kitchen  
  • BC Cancer and other departments might be in a position to make valuable introductions to relevant clinical staff in the patient’s local Regional Cancer Center.  

 

Most patients (especially after initial diagnosis) have no idea of the required services they will need nor of the capacity available in the local Regional Hospitals & Cancer Centers.  Reaching out to your local Regional Cancer Center will remove some of the mystery surrounding your stem cell transplant and provide valuable information to assist in deciding whether to go home between treatment visits.

Note: This list of places to stay is provided for informational purposes only and has been selected based solely on proximity to VGH.  Inclusion or exclusion from the list does not imply endorsement, approval or recommendation.  We make no promises and assume no responsibility regarding any listed business’s availability, quality, or suitability.  Any concerns or issues should be discussed and resolved directly with the owner of the accommodation

  • Volunteer Cancer Drivers Society (no charge) 604-515-5400 volunteercancerdrivers.ca
    They pick up cancer patients in all cities and communities through the north shore, greater Vancouver, the Fraser Valley to Chilliwack and south of the Canadian border. To book, visit their website or call their dispatch number at least 24 hours ahead.
  • Canadian Cancer Society – Wheels of Hope 
  • Freemason Volunteer Driver Program (no charge) – 604-872-2034
    Patients must be able to get in and out of a car unassisted and also be willing to share a ride and have some flexibility in the pickup and drop-off times. Contact them at least 24 hours prior to your appointment.
  • BC Health Connections – community programs may be available such as Handy/DART for public service door-to-door service.
  • Volunteer Driver Program – Local community organizations offer low-cost or free rides to attend medical appointments. Ask your local cancer centre for contact information
  • TAP – Ministry of Health Travel Assistance Program 1-800-663-7100.
    This program provides discounted rates for ferries, some ground transportation such as buses (not BC Transit) and some airlines. Forms are available from the information and admitting desk in the lobby, at the patient and family counselling office, at the 2nd floor reception desk, station A and station D in ambulatory daycare, and at ACCU reception on the 6th floor.
  • Hope Air – 416 222 6335 or toll-free 1 877 346 HOPE (4673) 
    If you cannot afford to pay to travel to your non-emergency medical appointments, you can fly for free using Hope Air.  You must have a doctor’s letter.  Hope Air can provide free accommodation to qualified individuals for up to 7 days during medical treatment in partnership with Airbnb. Accommodation can be booked additionally or independently of flights.
  • Accommodation for one month
  • Parking fees at VGH and/or at the accommodation
  • Travel expenses – gas, ferries or airplane (car rental or taxis)
  • Food for you and caregiver for one month
  • Funds for prescription drugs on discharge if needed
  • Cancellation insurance for accommodation recommended in case transplant is delayed
  • Travel Assistance Program- (TAP). You can get a TAP form from your doctor’s office (specialist or GP). The form provides a free return ferry trip for a car and driver and escort if needed or a reduced airline rate. Follow the instructions on the form to register for the journey.
  • Service Clubs are often willing to help if you write a letter explaining your situation
  • “Go Fund Me” has worked for some people
  • For low-income patients, the social worker at Victoria Hospital may help find funding to cover the total cost of the Cancer Lodge.
  • Taxi vouchers are available as needed for travel to and from the Cancer Lodge to the hospital. Ask at the hospital.
  • Check your medical insurance benefits and taxable deductions

Myeloma Treatment While Travelling​

Going on vacation but worried about the impact of skipping a treatment?

Are you wondering if your treatment is available at your destination?

 

It is possible to be treated out of province or country if there is a reciprocal agreement in place with the province or country you are travelling to. BC Cancer covers the cost (to a defined maximum) of treatments provided in other jurisdictions or countries that have reciprocal agreements with BC.  Don’t forget to inform your healthcare team of your travel plans.

 

Information can be obtained on qualified physicians, treatment centers and travel public health measures from:

STEM CELL TRANSPLANT PROCEDURE

Vancouver General Hospital Healthcare Team

As of January 2022, Vancouver General Hospital (VGH) is the only hospital to offer stem cell transplants for blood cancer patients residing in British Columbia and the Yukon.  Hematologists require special accreditation in the field of stem cell transplants which involves an additional 1 to 2 years of schooling and training.  In addition, the facility needs to have the required setup and staff, such as nurse navigators to support the stem cell transplant process and patients. We are incredibly fortunate to have recognized myeloma specialists in stem cell transplants at VGH who participate in many ground-breaking myeloma clinical trials.

 

Myeloma patients undergoing stem cell transplants at VGH are considered ‘outpatients,’ which means leaving the hospital on transplant day unless there are complications.  As an outpatient, you will require a 24-hour caregiver during your blood count recovery and until discharged from the BMT Daycare Unit.  Blood count recovery typically takes three weeks post-transplant; however, this varies from person to person.  VGH has a dedicated floor for stem cell transplants and recovery.  Located in the Leon Blackmore Pavilion it’s called “BMT Daycare”.  The BMT Daycare is where all stem cell transplants and blood count recovery take place.  The nurses and professional staff are all trained in blood cancer treatment and provide excellent support throughout this journey.  Some view these BMT days as a ‘Day at the Spa’ where lovely nurses caters to all your needs including a warm blanket as stated in this article VGH Daycare (Document #3)

As the saying goes “It takes a village to raise a kid” …well it takes a village to help us cross the finish line post-transplant and beyond.  Below is a list of your BMT health care team at VGH but there are many more people behind the scene such as secretaries, assistant navigators and administrators, to name a few, that ensure everything runs smoothly.  How lucky are we! 

 

 

  1. Attending Doctor (Hematologist): The “head doctor” in charge of your care. Hematologists specialize in blood diseases and disorders. This doctor is usually on duty for two weeks at a time on the inpatient and outpatient units. All attending doctors meet regularly to discuss your case. 
  2. Clinical Associate Doctors and Fellow Doctors: Doctors with advanced training in blood diseases and stem cell transplant. They will assess you every day (or every visit in Daycare) and discuss your progress with the Attending Doctor. 
  1. BMT Registered Nurse (RN): Nurses assess your condition and progress, give your medications and assist with all aspects of your care. Your nurse is your main contact through treatment; and monitoring and supporting you 24hr/day on the inpatient unit. 
  1. Pharmacist: Pharmacists monitor and prevent problems related to the medications your doctors order for you. They help you understand how to take medications at home. 
  1. Social Worker: Social Workers help you cope with your diagnosis and how it may affect you, your family, your living arrangements, your finances and other practical matters. 
  1. Registered Dietitian: Dietitians are experts in nutrition. They help you manage symptoms and make the best food choices, especially when your appetite is low.  
  1. Physiotherapist (PT): This team helps you maintain and regain your strength through treatment and recovery. They help you design an activity program based on your needs. 
  1. Occupational Therapist (OT): This team helps you manage everyday activities, moving safely, coping with symptoms and any equipment needs you may have to get you through the day. 
  1. Nursing Unit Assistant: These professionals perform clerical functions in the support of the delivery of patient care, including booking outpatient appointments, scheduling tests, and coordinating care.
  1. Spiritual Care Practitioner: A practitioner is available to meet spiritual and emotional needs of patients’ family and staff. They provide spiritual care to people of all faiths, including those with no formal belief system, and can arrange care by clergy in the community. Speak with your nurse to arrange a visit. 
  2. Nurse Navigators & Assistant Navigators: This team arrange all the planning, testing and appointments needed if your doctor recommends a stem cell transplant or bone marrow transplant. 
  1. Patient Care Coordinator (Charge Nurse): Charge nurses supervise each unit and are available to discuss nursing care, hospital services and your needs and concerns.  
  1. Patient Services Manager: Each Nursing Manager is responsible for the BMT units within the program, including patient care & policies.

For additional background on the VGH BMT Health Care Team, please refer to the Leukemia/BMT Program of BC website.

Note that your local Cancer Agency may offer similar support programs which are all worth exploring before and after a transplant.

What to Do Before Myeloma Stem Cell Transplant

Once you have made the decision to have a transplant, it’s best to focus your energy on things over which you have control, rather than dwell on those things you can’t control.

 

What you must do before your stem cell transplant

  • Choose a 24-hour caregiver
  • Register for Fair Pharmacare
    • There are no premiums to pay. Register online.
    • Any questions, call 604-683-7151 or 1-800-663-7100
  • Plan where to stay
  • Arrange care for dependents and pets
  • Purchase digital thermometer
  • Inform VGH healthcare team if you’ve seen a doctor in a separate facility
  • Get COVID and Flu vaccines – if recommended
  • Visit your dentist

What you should do before your stem cell transplant

  • Proper nutrition – eat well and gain weight if you’re on the light side
  • Build strength and energy through regular exercises
  • Connect with the VGH social worker and support team
  • Learn about stem cell transplants
  • Plan ahead
  • Get house cleaned with non-toxic products
  • Make decisions about your hair

ROADMAP: Diagnosis to Treatment to Recovery

Print this very useful ROADMAP (Document#4) showing eight important steps from diagnosis to treatment to recovery

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)
  1. 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).

 

  1. 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.

 

  1. 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.
  1. 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
  1. Imaging Tests
    • Full body (skeletal) X-Ray to check for changes in bone structure and determine if there are weak spots (osteolytic or lytic lesions)
    • CT scans to detect small 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
  1. 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 604-877-600 and follow the prompts.  As a last resort go to your nearest emergency room. 

  1. 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.
  1. 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. 
  1. 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). 

  1. 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 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.

 

  1. 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 – 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 to evaluate kidney function
You can learn more in the “Understanding Bloodwork” section,  below on this page or download Myeloma Canada info booklet.
 
  1. Heart Test
    Heart tests such as Electrocardiogram (ECG), Radionucleotide Ventriculogram (RVG) will be performed to ensure your heart is healthy pre-transplant.
  1. 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.
  1. Kidney Test
    Kidney tests such as a 24-hour urine collection will be performed to confirm kidney function pre-transplant.
  1. 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.
  1. 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.

 

  1. 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.

 

  1. 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.
  1. 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.
  1. 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 issuesSome 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.

 

  1. 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.

 

  1. 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 6th 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.

  1. 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 15th or 16th

Note: All British Columbia and Yukon myeloma patients undergo their Stem Cell Transplant at Vancouver General Hospital BMT Daycare unit located on the 6th 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 6th 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 usually takes 3 weeks; 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 604-877-600 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. 
  1. 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. 

  1. 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
  1. 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 6th 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
  1. 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.
  1. 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.

  1. 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. 

  1. 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.

  1. 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.

  1. 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. 

 

  1. 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.
  2. 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.
  1. 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. 
  1. 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.  
  1. 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).
    • 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

Caring for the Hickman Line

A Hickman line (catheter) is a special intravenous (IV) flexible tube made of silicone that goes into a large vein near your heart. Your Hickman will have 3 tubes each colour  coded to indicate usage. Part of the Hickman line is “tunnelled” under the skin of your chest. The tip of the line rests in a large vein just above your heart. The end of the Hickman line leaves the body from a small incision (opening) on your chest. This is called the exit site. A “cuff” under your skin helps to keep the Hickman line in place. This cuff may feel like a small bump just under your skin next to the exit site. Even with the cuff, it is possible to accidentally pull the catheter out, so handle your Hickman carefully!

Why is a Hickman line used?

    • A Hickman line lowers the number of needle punctures needed for IV
      medications and blood taking;
    • It can be used for a much longer time than usual IV lines;
    • It lets you move around more easily

 

When should I call BMT Daycare or my Doctor with concerns?

With a Hickman Line, you have a higher chance of getting an infection. You can also get a blood clot that forms around the catheter. Call the BMT Daycare 604-875-4073 or your doctor if you have any of these symptoms:

    • Aches, chills, or other flu-like symptoms
    • Dizziness or feel lightheaded
    • Fever over 100.4 F
    • Redness, swelling, or fluids draining around where the catheter comes out of your body
    • Swelling, tenderness, or redness in your hands, fingers, arm, or neck
    • Vomiting or nausea
    • Tightness in your chest or shortness of breath

You may also run into problems with the catheter itself. Call BMT Daycare 604-875-4073 or your doctor if you have any of these issues:

    • There’s a break or leak in your catheter.
    • Your catheter gets pulled out of place.
    • A connector falls off.

General DOs  

    • DO keep the dressing over the IV line DRY at all times.
    • DO cover your IV-line dressing prior to bathing as the dressing itself is NOT waterproof.
    • If you have a detachable shower head, try to aim the water away from the covered IV-line dressing.
    • DO use cling wrap or a silicone patch that is slightly sticky on one side, allowing it to cling to your skin (can find at a pharmacy grocery store or online).

General DONTs 

    • DO NOT allow the IV line to be submerged under water even if protected by a cover.
    • DO NOT remove the IV line dressing yourself if it gets wet

Some patients find having the tubes hanging from the chest opening visually uncomfortable, painful or annoying. One solution is to create a ‘sling’ type apparatus around the neck and tube ends.  Securing the tube ends with either soft yarn, shoe string or ribbon provides support to the tubes.

Exercising Post Stem Transplant

As an outpatient with the BMT daycare, you will have access to a physiotherapist for any mobility concerns and needs. It is likely you will be given a home exercise program “HEP”, to help improve your strength and exercise tolerance. It is recommended to complete some form of strength training 2-3 times per week.  This can be with resistance bands, light weights or through daily tasks. It is important to continue to exercise during your stem cell transplant recovery to maintain your strength and circulation, and to help lessen the side effects of your treatments. 

Marching on the spot is a very good exercise to keep up your strength and balance.  Stand up and lightly hold onto a windowsill or stable furniture. March in place, lifting your foot at least 6 inches off the ground. Watch a clock and “March” for about a minute or until your legs are a little tired. As you get stronger, start increasing the time as tolerated, as well as other exercises. 

Daily walks are also an excellent way to improve and maintain your cardiovascular health, and endurance which has been shown to help decrease cancer related fatigue. It is recommended to aim for 150 minutes per week of moderate aerobic exercise (walking or cycling).

If you have a Hickman Line, you can move that shoulder in any direction but avoid strong swinging or forceful stretching. Avoid heavy resistance exercise on that side and be careful not to pull on the line. Swimming is not recommended, to avoid getting the Hickman line wet, and to avoid strain on the shoulders. Do not push or pull more than10lbs.  Good posture is important: try to be aware of your posture throughout the day. 

 

Things to keep in mind when deciding how much activity is appropriate:

1. White Blood Cells/Neutrophils  (Normal = White cells 4 to 11;  Neutrophils 2 to 8)   

    • When the neutrophil count is low, you should do your best to avoid infection. At home, you need to wash your hands often, avoid being around anyone who is sick, and avoid areas where a building is being torn down or under construction.
    • When this count is improved, it is still important to avoid infection risk. When in the hospital wear your mask when speaking with health care professionals, unless instructed otherwise. You may only remove the mask when you are actually outside in the “fresh air” and away from other people.  Avoid crowded areas like the cafeteria when it is busy during peak times, and stay away from active construction. Frequently wash your hands, and avoid touching unnecessary items.
  1. Hemoglobin  (Normal = Women 115–150; Men 135–170)

Hemoglobin is in the red cells of your blood. This carries oxygen around your body.  Every cell needs oxygen for energy to carry out normal processes.  

    • If the Hemoglobin count is less than normal, you may tire more quickly. You may find it helps to go more slowly and do shorter periods of activity more often. If you get short of breath or tired, slow down or rest before continuing.  If your Hemoglobin is less than 70 you may receive a transfusion of blood.

3. Platelets  (Normal = 150 – 400)

Platelets are cells that help stop bleeding when tissue is damaged. When you exercise, especially against resistance, you can cause very small injuries to tissues and small blood vessels. This is normal and usually heals easily, causing no problems. However, when your level of platelets is low, bleeding may not be stopped as effectively.

When your platelets are low, avoid resistance exercise and avoid bumping or scraping your body.  Wear appropriate shoes to protect your feet, and long sleeves and pants to protect your skin. 

    • If platelets are less than 10 – limit your activity. You may receive a transfusion of platelets.  Be extra careful to avoid injury or falling down.
    • If platelets are between 10 and 20 – exercise gently without resistance. You can do sitting or standing exercises, gentle stretching and walking. You may use a stationary bike without resistance once shown how to use it.
    • If platelets are between 20 and 50 – you may use light resistance, such as weights or elastic tubing or theraband. You can walk more briskly and practice step-ups or stairs.  You may use a stationary bike without resistance.
    • If platelets are over 50 – you may do resistance exercise and aerobic exercise such as biking or jogging.  You may use a stationary bike with resistance. However, wear appropriate gear and continue to avoid injuring yourself.  Platelets should be over 100 for deep massage or heavy resistance.

For more information see “Understanding your Bloodwork” section below on this page.

Ways to gauge how much activity to be doing:

    1. Talk Test – When you are walking, you should be able to hold a conversation. If you find yourself frequently short of breath, it is best to either slow the pace you are walking at, or take a break
    2. Light to moderate difficulty – Your physiotherapist may mention a rate of perceived exertion scale called the Borg scale that ranges from 6-20. On this scale it is important to only work within 11-13, which translates to a light to a moderate difficulty.
    3. Avoid soreness – If you are experiencing delayed onset muscle soreness, which is the muscle aches and pains the 1-3 days following activity, this is a sign you are working above a light to moderate difficulty and need to lessen how hard you are working during your exercise.

When your blood counts are normal, there are no restrictions on exercise but ask your doctor before taking up sports and activities that put you at risk of injury.

Inspire Health offers free exercise classes for all levels for people with cancer. 

    • Beginner’s Strength & Stretch
    • Group Strength & Cardio
    • Strength & Stretch

Note: Everyone’s post-stem cell transplant recovery varies SO don’t get discouraged if someone else recovers more quickly than you, even if you are younger, healthier and stronger.  At times the mountain may seem high BUT know that your body will get back it’s strength and you WILL climb to the top.

MANAGING TREATMENT

MANAGING COMPLICATIONS

The high number of myeloma cells crowds out red blood cells and decreases their production in the bone marrow leading to a reduced red blood cell count. Red blood cells contain hemoglobin that carries oxygen from the lungs to cells throughout the body, providing stamina and energy. A low hemoglobin count can lead to anemia. 

 

Anemia can cause:

    • Fatigue
    • Shortness of breath
    • Difficulty concentrating 
    • Look pale
    • Feel lightheaded or dizzy
    • Experience headaches
    • Have leg pains or feel cold 

Managing Anemia

    • Eating healthier or taking iron, vitamin B12 or folic acid (folate) supplements
    • In severe cases, blood transfusions can be used to quickly increase the hemoglobin in the short term.
    • Your doctor may prescribe medication to stimulate the production of red blood cells. 

Our bones are constantly being remodeled by two types of cells with complementary functions:

    • Osteoclasts break down old bone to make room for new bone. 
    • Osteoblasts lay down new bone to replace the bone broken down by osteoclasts.

Under normal conditions, both types of cells keep the rate of bone formation and bone breakdown equal, so that bone mass remains the same.

 

Myeloma cells stimulate the osteoclasts (the cells that break down bone) while at the same time interfering with the production of osteoblasts (the bone-forming cells).

 

As a result, bone is broken down faster than it can be replaced, leading to:

    • Areas of damage (mushy or “holes”) in the bone (i.e., osteolytic or lytic lesions).
    • Progressive thinning of the bones (i.e. Osteoporosis). 

Managing Bone Complications

    • X-rays and bone density scans are used to monitor bone loss and check for damage.
    • Bisphosphonate drugs are routinely prescribed to strengthen the bones.  The drugs most used are pamidronate (Aredia) and zoledronic acid (Zometa). 
    • Radiation therapy can be used to treat bone lesions and relieve pain.
    • Procedures can be performed to stabilize fractures of the spine (i.e., vertebroplasty, kyphoplasty).  
    • Mild or moderate activity, such as walking or swimming offer physical and emotional benefits. Avoid contact sports or activities that could result in falls should be avoided. 

Myeloma and some of its treatments can affect the normal production of antibodies and reduce the white blood cell count, making it harder for the body to fight off infections. 

 

Managing Infections

    • Fever or signs of infection should be reported promptly to your healthcare team.
    • Antibiotics may be required before dental work to reduce the risk of infection.
    • Reduce the risk of infections by:
      • Practicing good hand-washing techniques.
      • Washing your hands frequently or using a hand sanitizer.
    • Avoiding situations that place you in contact with people who are ill

The M-proteins produced by myeloma are cleared from the body by the kidneys. Over time, the elevated levels of abnormal M-proteins in the blood and urine can damage the kidneys. Be careful not to take too many ibuprofen (Advil).

Managing Kidney Damage

    • Kidney function should be assessed regularly by measuring levels of creatinine in the blood.
    • Drinking lots of fluids (ideally, 6-8 glasses of water per day)
    • Limit your consumption of drinks that contain caffeine (i.e,. coffee, tea, soft drinks, etc.) and alcohol. 

 As bone is broken down, it releases calcium in the bloodstream, a condition known as hypercalcemia. 

Too much blood calcium can cause:

    • Constipation
    • More frequent urination
    • Weakness
    • Confusion in extreme cases

NOTE: Never take a calcium supplement without checking with your doctor.

Peripheral neuropathy (PN) is a complication of myeloma involving damage to the nerves of the peripheral nervous system that can be caused both by myeloma and by treatments for myeloma.  Neuropathy usually occurs as a change in feeling in the hands, fingers, legs, feet, toes, or lips. Any neuropathy symptoms should be reported early to your healthcare team to potentially reduce the severity.  Nerve damage from PN can be permanent if unaddressed.

Treatments that cause neuropathy:

Neuropathy can be experienced as:

    • painful sensitivity to touch.
    • sensation of cold feet and weak ankles.
    • burning, tight, electric jolts or pulling sensation.
    • numbness or a “pins-and-needles” feeling.
    • trouble fastening buttons.
    • difficulty opening jars or feeling the shape of small objects with your hands.
    • trouble walking
    • muscle weakness

Managing Nerve Pain:

    • Pain medication and anti-inflammatories
    • Radiation (for bone pain)
    • Vertebroplasty or kyphoplasty (for nerve damage due to compression fractures)
    • Other types of medication, such as tricyclic antidepressants and anticonvulsant medications (for neuropathic pain). Always consult your healthcare team first.

Managing Peripheral Neuropathy

    • Topical cream, liquid, patches or gel with menthol or capsaicin can relieve the sensation.  They tend to block pain messages to the nerves.
    • Pain medication and anti-inflammatories
    • Massage area with cocoa butter regularly.
    • Physical therapy
    • Radiation (for bone pain)
    • Vertebroplasty or kyphoplasty (for nerve damage due to compression fractures)
    • Other types of medication, such as tricyclic antidepressants and anticonvulsant medications (for neuropathic pain). Always consult your healthcare team first.
    • Heat or cold pads can also relieve the pain and reduce the sensation.
    • Check your vitamin B12, B6 for deficiency.
    • Supplements
      • B-complex
      • Vitamins B1, B6, B12
      • Folic Acid and/or amino acids – avoid on Velcade (Bortezomib) injection days
    • Acupuncture and tai chi have been shown to reduce the pain.
    • Exercising can also alleviate the pain.
    • Quitting smoking and reducing or eliminating alcohol consumption may help.
    • You can also talk with your doctor about reducing the dose or changing how Velcade (Bortezomide) is administered – intravenously (IV) or injection (sub cutaneous), if available.

Supplemental options:

Before taking any of these supplements, discuss their use with your health care team.

    • Vitamin B6, not to exceed 100 mg per day.  (More than that can be toxic to the nerves.) If you’re already taking a multi-vitamin or a B vitamin complex that includes B1, B6, B12, and folic acid, make sure that the total daily dose of B6 is nor more than 100 mg.
    • Francis Herb Farm Deep Immune.
    • Vitamin B12, at least 400 micrograms daily (can be part of the B complex vitamin)
    • L-glutamine, 500 mg per day
    • L-carnitine, 500 mg per day

If symptoms become more severe, your healthcare provider may recommend the following:

    • pain medication or other medication for nerve pain relief
    • stopping treatment for a period of time
    • lowering the dose of treatment
    • physical therapy

 

  • Low platelet levels.
    • Normal blood clotting is affected, which can lead to bruising or excessive bleeding.
  • Increased risk of blood clots in the veins, associated with some medication.
    • Known as deep vein thrombosis (DVT), a potentially dangerous condition.
    • Blood-thinning medication can be prescribed to reduce the risk.
  • Thicker-than-normal blood (i.e., hyperviscosity) resulting from a high M-protein level.
    • Can affect blood flow to the skin, fingers, toes, nose, kidneys or brain.

MANAGING SIDE EFFECTS

Chemotherapy and prescription medications often cause unpleasant side effects. 

It is important that you ask your healthcare team, particularly your pharmacist the following questions:

    • What are the potential side effects?
    • Duration of the side effects?
    • Which side effects you should report immediately?
    • When is best time to take the medication?
    • On a full or empty stomach?

For more information on managing side effects visit “Wellness Tips” on this website.

    • Anti-sickness (anti-emetic) drugs can help prevent nausea and vomiting.
    • Avoiding strong smells and getting lots of fresh air can also help.
    • Try to stay hydrated by taking frequent sips of cool drinks.
    • Medicines or special mouthwashes (without alcohol) can help.
    • During high-dose intravenous therapy, sucking on ice chips can help prevent mouth sores.
    • Keep your teeth clean, using a soft toothbrush.
    • Avoid spicy, salty or tangy foods that can irritate your mouth, as well as food that stick to the roof of your mouth (i.e., peanut butter, chocolate, etc.).
    • Moisten your food with gravy or sauces.
    • To avoid losing weight, try to eat small amounts of food (particularly fresh fruits and vegetables) frequently throughout the day.
    • If you feel hungry at some parts of the day and not at others, eat your larger meal when you are hungry.
    • No matter what you eat, be sure to always drink plenty of fluids.

You may experience a variety of difficult emotions. Anxiety and distress or depression can be provoked during diagnosis, assessments for response to therapy, treatment, and recurrence. Anxiety may increase pain, affect sleep, and cause nausea and vomiting. Distress is emotional, mental, social, or spiritual suffering leading to feelings of vulnerability, sadness, depression, panic, or isolation. Symptoms of distress and anxiety can include trouble focusing, muscle tension, trembling or shaking, dry mouth, and anger.

 

Anxiety is reported in over 35% of myeloma patients and depression nearly 25%. 

 

Potential Cause of Anxiety and Depression

    • Financial concerns
    • Disease progression
    • Preparing for end-of-life
    • Changes to quality of life
    • Social changes
    • Sexual function changes

Managing Anxiety and Depression

    • Rest, relaxation and proper sleep hygiene
    • Pamper yourself with massage, manicure, facial, shopping spree etc.
    • Maintain a healthy weight – ensure proper diet and exercise program
    • Keep hydrated
    • Talk to your doctor about getting some professional counseling and/or taking anti-anxiety or anti-depressant medication.
    • Take time for some relaxation or gentle exercise to help de-stress.
    • Share your feelings and fears with others.
    • Know that it’s normal to feel sad and frustrated as a cancer patient.
    • Spiritual support through prayer or meditation may be helpful.
    • Steroids such as dexamethasone can increase anxiety, so discuss adjusting your steroid dose with your doctor.

Treating diarrhea may cause you to become constipated which is no better.  It really becomes a balancing act when trying to find that sweet spot.

 

Potential Cause of Constipation

    • Opioid pain relievers, antidepressants, heart or blood pressure medications
    • Supplements such as calcium, iron, vitamin D(rarely), vitamin B12 deficiency

Managing Constipation

    • Eating fruits, vegetables, high fiber whole grain foods
    • Fiber binding agents such as Metamucil
    • Drinking lots of fluids – ideally water

Revlimid (Lenalidomide) is usually the main culprit of diarrhea which means a very common and often socially debilitating side effect for many of us. Functional diarrhea is defined as loose stool consistency and chronicity and absence of coexisting health issues such as Inflammatory Bowel Syndrome (IBS).  There are many remedies both over the counter and prescribed that could work however some may cause constipation which is no better.  The time you take Revlimid (Lenalidomide) may also be a factor.  Some believe taking at night is better than morning. If it becomes intolerable, consider discussing with your doctor dosage or frequency reduction (taking every other day).   

 

Remember you can’t let diarrhea rule your life.  If wearing ‘depends’ allows you to got out without being anxious of having an accident then that’s what you do.  Bottom line is you need to find what works for you – find your recipe!  Unfortunately, that often means lots of trial and errors.

 

Potential Cause of Diarrhea 

  • Revlimid and Dexamethasone
  • Laxatives, antacids with magnesium
  • Antibiotics, antidepressants
  • Milk thistle, aloe, cayenne, saw palmetto, ginseng
  • Sugar substitute in sugar free gum
  • Avoid caffeinated, carbonated or heavily sugared beverages.

Managing Diarrhea

  • Drink lots of fluids (6 to 8 glasses/day) of water ideally but also fruit juice, caffeine free soda, salty broth. Be careful not to drink too much too fast which may cause stomach pain. Drinking a sip every 10 minutes may work for you. 
  • Try drinking 1 full glass of water right after a loose bowel movement.
  • Track your daily bowel movement in a log – severe diarrhea means 6 to 8 bowel movements (loose or not) a day.
  • Take oral hydration solutions such as hydrolyte or Gatorade to improve your body’s electrolytes and glucose balance.
  • Imodium has shown to be effective in reducing diarrhea but may also swing you to constipation – half a pill every morning may work for you.
  • Fiber supplements such Metamucil may help some with diarrhea and constipation. It increases the bulk of your stool as well as increases the levels of water in the stool, making the stool softer and easier to pass.
  • Loperamide (Imodium) slows the movement of food through your intestines, which lets your body absorb more liquid. Taking in the morning may be better than night.  If you find it causes constipation consider taking half a pill in the morning.
  • Bismuth subsalicylate (Kaopectate, Pepto-Bismol) can help – it balances out how fluid moves through your digestive tract.
  • Prescription medication such as Olestyr (cholestyramine – a bile acid sequestrant) can reduce diarrhea.
  • Prescription medication such as Lomotil can reduce the pain/cramps associated with diarrhea

 The most common side effect of myeloma and myeloma treatments reported is fatigue (98.8%).  There is no quick solution other then to know that “the less you do the less you can do.”  Getting through those months, especially post-transplant days, when you have little or no energy are challenging, but you will get through them and gain your energy back. 

 

Potential Cause of Fatigue

    • Anemia
    • Pain
    • Reduced activity
    • Insomnia
    • Treatment toxicity
    • Bone marrow suppression

Managing Fatigue

    • Modify your diet
    • Check your vitamin D levels
    • Taking supplements such as ginseng may help
    • Get some motivational apps, music, talks that will help you move
    • Some patients set an alarm clock in the other room to go off every 2hrs – forces you to get up and turn it off.
    • Marching on the spot is good to keep strength and balance – lift foot approximately 6 inches off the ground and hold on to something (windowsill or furniture or countertop) – start with one minute
    • Daily walks – laps around the house or out in a non-busy community area to avoid infections – start with a short distance (e.g. a neighbour’s house or a tree) then increase a little bit every day
    • Spend time sitting up in a chair
    • Try to work up to 150 minutes per week of moderate aerobic exercise – walking or cycling
    • With a Hickman line, avoid resistance exercise on that side, and no swimming since you don’t want to get the port line wet. The maximum lifting weight is 10lbs.
    • Good posture is important for strength and balance, so keep good posture throughout the day
    • Do some strength exercises such as resistance bands, light weights (max 10lbs) 2 to 3 times per week
    • Set up a daily schedule with goals to help keep you motivated

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.  Always apply sunscreen if your head is not covered.  Your head may feel cold when you are sleeping: try a thin cotton hat such as a painters hat.

 

Managing Hair Loss or Thinning

 

  • Prepare your loved ones.
    • Loved ones should be aware of the hair loss after transplant. Young children may not understand, so be sure to reassure them that your hair will grow back.  They may feel better if they help you pick out wigs or other hair coverings.
  • Short hair cut.
    • Try cutting your hair very short before your stem cell transplant. A short hair cut will give you some idea of what it will look like when your hair begins to grow back in 3 to 6 months. 
  • Be prepared for the re-growth.
    • In some cases, the new hair can grow in with a different color, texture or wave but this change usually isn’t permanent.
  • Keep warm.
    • It’s surprising how much warmth a full head of hair provides. When your body is not used to a bald head you will find it cold especially when sleeping.  A thin head covering like a painter’s hat or similar can keep you warm while sleeping. 
  • Head Covers
    • Be creative with other hair accessories such as wraps, hats, turbans which can be very fashionable and affordable. Another good option is the original BUFF® neck warmer which can be converted into a cap or sahariane. There are many examples/tutorials on ‘how to tie a headscarf’ on the internet.

  • Visit a wig specialist.
    • Suggest visiting a wig specialist before your stem cell transplant if you’re going to wear a wig. This way the specialist can see your current hairstyle and color and may be able to suggest a wig that looks similar to your natural hair.  You also may be able to pre-order a custom-made wig.  May want to consider buying more than one wig.  This way you can avoid going without a wig while having one cleaned and restyles. See also/Link to ‘Resources’ page
  • Wig salon.
    • Find a quality wig salon that can provide good advice on the shampoos, conditioners and brushes to use on your wig. Good wig salons will clean and restyle wigs as needed.  Your local Cancer Agency, support group or hospital may be able to provide suggestions. Visit Look Good Feel Better for support.
  • Wear sunscreen.
    • Be sure to wear sunscreen or protect your bald head with a hat or scarf when in the sun.
  • Insurance coverage.
    • Depending on the wig quality they can be pretty expensive. Find out what your insurance will cover before hand.  Some insurers will pay for 80% or more of the wig’s cost if the wig is used for medical purpose.  Make sure your doctor writes a prescription for your wig so you can submit a claim to your insurance company.

Adequate rest and sleep are essential to a healthy lifestyle.

 

Short and disturbed sleep increase risk of:

    • Heart related death
    • Increase anxiety
    • Weaken immune system
    • Worsened pain
    • Falls and personal injury

Potential Cause of insomnia

    • Steroids (Dexamethasone), stimulants, herbal supplements
    • Psychologic – fear, anxiety, stress
    • Physiologic – stomach gas/pain, diarrhea/constipation, leg cramps, bone pain, sleep apnea, heart issues

Managing Insomnia

    • Engage in exercise but too close to bedtime
    • Increase daytime natural light exposure
    • Avoid daytime napping if possible
    • Establish bedtime routine – warm bath, cup of warm milk or herbal tea
    • Associate your bed for sleep only – avoid using electronic devices in bed
    • Try taking steroid (Dexamethasone) at bed time
    • Sleep aid may be needed – cannabis, melatonin
    • Prescription medication may be required – Zopiclone or Trazodone. Check with your healthcare team.
    • Avoid before bedtime
      • Caffeine, nicotine, alcohol and sugar
    • Large meals ad especially spicy, greasy foods
    • Computer screen time

Another lovely side effect of Revlimid (Lenalidomide) and Pomalyst (pomalidomide) are leg cramps which often occur in the middle of the night. They’re sudden, painful spasms in your feet or legs. The cramps may ease after a few seconds, but the pain can last much longer.  Some say the cause may be due to dehydration or an imbalance in electrolytes, particularly magnesium and potassium but no one knows for sure.  If you’re dehydrated or you’ve over-exerted yourself physically, you may be running low on electrolytes. That could bring on a bout of leg cramps.

 

Managing Leg Cramps

    • Make sure you stay hydrated – oral hydration solutions such as hydrolyte or Gatorade may improve your body’s electrolytes and glucose balance.
    • Tonic water on a regular basis has been known to help. Also suggest keeping ¼ glass of tonic water on your bedside table to drink during flare ups.
    • Check your potassium, magnesium, vitamins B12 and B6 levels
    • Heat or cold compresses may help
    • Warm bath and massages also recommended
    • Some old folk remedies such as tucking a bar of soap end of your bed sheets or a heaping mouthful of mustard vinegar may help.

For those that experience the loss of taste and/or smell during your maintenance therapy you have Revlimid (Lenalidomide) to thank. It appears to come and go and even disappear, but its different for everyone. Trying different recipes may help.

 

Managing Loss of Taste and Smell

    • Write down which foods are affected.
    • Try to identify different aspects of taste that are affected, which may help you to find foods that remain palatable.
    • Strong spices can punch up food and make it tasty again.
    • adding raisins in your cereal may help to make it more enjoyable
    • Sweet foods do not seem to cause as much of a problem as salty foods.

Dexamethasone is a common steroid used in myeloma treatment because it can stop white blood cells from traveling to areas where cancerous myeloma cells are causing damage. This decreases the amount of swelling or inflammation in those areas and relieves associated pain and pressure. 

 

Some common side effects:

    • Fluid retention and swelling
    • Increase in blood sugar
    • Insomnia
    • Increase appetite
    • Ingestion or heartburn
    • Hiccups
    • Blurred vision
    • Mood or emotional changes – may include depression, mood swings, agitation, anxiety or even psychosis. It’s important to reach out to a health professional if you experience more ‘blue’ or ‘down’ days than good days.
    • Excessive/bursts of energy (which is not a bad thing) as well as overly chatty – best to give your family a heads up on your ‘dexa’ days.

Potential long-term side effects of steroids:

    • Weight gain, with a “moon face” like appearance
    • Osteoporosis or bone loss
    • Muscle weakness and/or wasting
    • Cataracts
    • Fatigue
    • Changes in your memory and concentration (also called “chemo brain”)
    • Infertility (not being able to have children)
    • Lower hormone levels (thyroid hormone, testosterone, estrogen)

Managing Steroid Side Effects

    • Some patients recommend taking Dexamethasone at dinner time. Remember it must always be taken with food.
    • Take short naps of 15-20 minutes during the day.
    • Be active during the day so you will get a better night sleep.
    • Wake up and go to bed at the same time every day.
    • If you’re considering a sleep-aid start with natural supplements before taking prescription sleeping pills:
      • Cannabis THC – gummies seem to work best.
      • Melatonin supplement can be very affective for insomnia
    • If sleep is still challenging ask your doctor to prescribe sleeping pills – especially on your dexamethasone days. Note that some are more addictive (zopiclone) than others (trazodone).
    • Relax before bedtime – have a warm shower, listen to music, read, listen to audiobooks or podcasts. Try to avoid screen time – TV, cell phones and other electronic devices.
    • Avoid caffeine consumption at least 6 hours before bedtime. Note that caffeine is found in coffee, non-herbal tea, chocolate and soft drinks. 
    • Avoid heavy drinking or meals 2 hours before bedtime.
    • Ensure your sheets, pillows and mattress are comfortable.
    • Block out distracting light, and sound with ear plugs and/or sleep mask.
    • Get up and go to another room to read or relax if you are tossing and turning in bed. Stay there until you feel sleepy then return to your bed.
    • Consider sleeping alone on your dexamethasone nights.
    • Some patients find taking dexamethasone at night as opposed to morning lessens its side effects. Note dexamethasone should be taken with food.

MAINTENANCE THERAPY

The current standard treatment plan for myeloma patients after a successful stem cell transplant is to start maintenance therapy with approved myeloma agent(s). Maintenance therapy is usually a less intensive treatment course than the initial chemotherapy and used to delay disease progression and improve progression-free survival – length of time in remission before relapse. 

One of the frustrating realities of myeloma is the potential cycles between relapse and remission periods.  These cycles can occur more than once during a patient’s life; however, with new treatments, the time between cycles are increased, which is a good thing.

 

There are many very effective treatment options for relapsed patients, and many more being tested in clinical trials, so having a relapse should not cause loss of hope for a favorable outcome.

 

The choice of the next therapeutic option may rest on when the relapse takes place.

However, maintenance therapy can also be associated with unpleasant side effects, a risk of secondary cancer, and reduction in quality to life. 

Depending on your mental and physical health, you could look at discussing with your healthcare team:

  • New or varied treatment plan
  • Reducing dosage of existing treatment
  • Alternating when the meds are taken – every other day
  • Taking a ‘holiday’ or ‘break’ off the treatment for a week or month
  • Or stopping the maintenance therapy.

Having an open discussion with your health care team is important to determine your best options.  As always, the final decision on the course of action is yours and only yours to make.

UNDERSTANDING YOUR BLOODWORK

Since myeloma is a type of blood cancer, it only makes sense to gain a basic understanding of blood and its components.  This knowledge will allow you to interpret the countless blood tests reports to see how your body is responding to the treatment. In British Columbia we are very fortunate to have online access to our bloodwork lab results via www.mycarecompass.lifelabs.com (previously www.myehealth.com).  The lab reports highlight/flag any out-of-range counts with an “L” for low and “H” for high. 

 

So, here’s a quick lesson on the key blood components when tracking myeloma:

Red Blood Cells (RBC) – the oxygen carriers

Red blood cells carry oxygen to your tissues and transport carbon dioxide back to your lungs so it can leave your body when you exhale. Their red colour comes from a protein they carry called hemoglobin (Hgb or Hg). Not enough red blood cells can cause anemia leaving you feeling weak and tired. RBC count is closely monitored during your post transplant recovery.

White Blood Cells (WBC) – keep you safe

White blood cells are part of your body’s defense system. They kick into action to fight infections and diseases that have reached or originated in your blood.  Too few white blood cells may increase your chance of getting sick with colds, flu and other infections.  WBC count is closely monitored during your post transplant recovery.

Platelets – damage control

Platelets help stop bleeding and repair damage to your blood vessels by helping to form blood clots. Too few platelets can cause easy bruising, prolonged bleeding from cuts and spontaneous bleeding from gums or nose.  Platelets count is closely monitored during your post transplant recovery.

Neutrophils – reveals any infections

Neutrophils are a type of white blood cells that kill and digest bacteria and fungi helping your body fight infections.  High neutrophils count can point to an infection, most likely bacterial where as a lower neutrophil level can cause dangerous infections.   Neutrophil levels are closely monitored during your post transplant recovery.

Albumin – reveals liver function

Serum albumin is produced in the liver and normally makes up to 60% of plasma protein.  Albumin count shows whether your liver is functioning properly and if not, how serious the problem is.  Low levels can occur with myeloma.

Creatine – reveals kidney function

Creatinine levels show how well your kidneys are working. High levels mean that the kidneys are not functioning well. This is common with myeloma. 

Glucose – reveals amount of sugar

Glucose levels measures the amount 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 – reveals bone breakdown

Calcium levels in the blood are monitored to see if there is any breakdown in the bones.  High calcium levels can cause symptoms of fatigue, weakness, and confusion.

M-Protein – reveals presence of myeloma

The malignant or mutated plasma cells usually pump out only one type of plasma protein, called monoclonal protein, paraprotein, or M-Protein or M-Spike, instead of the variety of immunoglobulins or antibodies that they are supposed to. Monoclonal means that there is only one type of this abnormal protein.  The M-protein would be what some refer to as the myeloma ‘cancer count’.  Note that M-Protein is not listed as a line item on the bloodwork report but is part of the monoclonal or paraprotein band result which is found in the Protein Electrophoresis section under ‘Comments’ or ‘Patterns’.  Our goal is to have no monoclonal or paraprotein protein band detected. 

Blood Proteins – protection in your plasma

Three major protein components in the blood are:

  1. Albumin: Serum albumin is a protein produced in the liver from food we consume and normally makes up to 60% of plasma protein.  Low albumin levels can indicate low liver function, reduced nutritional intake and can also be low during multiple myeloma treatment.
  2. Beta-2 (β2) microglobulin: B-2-microglobulin is a small protein normally found on the surface of many cells, including lymphocytes, and in small amounts in the blood and urine.  It can be found in high levels in patients with active multiple myeloma. 
  3. Antibodies (immunoglobulins):  These are proteins made by plasma cells to protect us from infections.  Each antibodies (immunoglobulin) has two parts:
    • Heave chains that classify it as type G, A, D, E or M
    • Light chains that further classify it as type kappa (κ) or lambda (λ).

There are five types of heavy chains/immunoglobulins: IgG, IgA, IgM, IgE and IgD. Approximately 60-70% of patients have IgG myeloma and about 20% have IgA myeloma.  In total, there are 10 variations of heavy and light chain combinations with myeloma: IgA kappa, IgG kappa, IgM kappa, IgD kappa, IgE kappa, IgA lambda, IgG lambda, IgM lambda, IgD lambda, and IgE lambda.

Note that myeloma specialists do not treat patients differently based on their heavy or light chain myeloma type. These counts are used as one of many indicators on how your body is responding to treatment.

Light Chains

In some cases, the malignant plasma cells make only a portion of the monoclonal antibody called the light chain.  These are found in two varieties; kappa or lambda.  Light chain myeloma can be present from diagnosis or a patient’s myeloma may change with time from having a full monoclonal protein to only light chains.  

Light chains are very small and not always seen on the protein electrophoresis (the test we use to identify an M-protein).  So, your doctor may measure them using a separate test.  The ratio or proportion between the kappa and lambda light chains indicates an excess production of one chain over the other, and therefore can be used as an indication of disease progression or remission.

For additional information on bloodwork recommend reading “Understanding Your Blood and Blood Tests” booklet offered by Myeloma Canada.

 

Other informative websites to visit:

CLINICAL TRIALS

Clinical trials are a crucial piece in finding new, safe and effective treatments for myeloma and one day for finding a cure.  They allow researchers to gather information on a drug’s dose, effectiveness and safety in humans.  Clinical trial protocols are designed to answer key research questions by comparing results from the different treatment arms (groups) that include either the experimental drug, standard of care, standard of care plus placebo or their various combinations.

These studies can be conducted by a single researcher in one hospital or clinic, or by many researchers at the national or international (global) level. Because clinical trial research involves both drugs and people, there are strict regulations in place to ensure the safety of participants.

Deciding to participate in a clinical trial is a big decision and is usually made after many consultations with your health team and family.  A Clinical trial dialogue usually presents itself when existing therapies are not working or when your doctor believes your body will respond better with the new agent.  If you decide to participate in a clinical trial remember that you are ‘volunteering’ to do so.  This means you can exit the trial at any time.

Following pre-clinical research, there are usually four phases of clinical trials with each phase designed to answer a specific question using a specific group of volunteers.

Pre-Clinical Research

Research typically done in a laboratory using test tubes followed by testing in small animals to ensure new agent is safe to test on humans.

Phase I

Question – What is the best and safest way to administer the new therapy?

Group – Small selected number of volunteers

Phase II

Question – Does the agent work in a selected group of patients?

Group – Larger selected group than Phase I

Phase III

Question – Is the new agent effective, particularly in comparison to the best available existing treatment?

Group – Largest group often involving thousands of volunteers around the world.  Volunteered assigned randomly to new agent or existing therapy often blinded (meaning volunteer does not know which agent they are getting).  Double blinded means neither the volunteer or researcher knows who is getting what.

Phase IV or Post-Marketing Research

Question – Does the new agent work as well in the ‘real world’ as it did under Phase III controlled environment?

Group – Patients that are using the approved new therapy

It is important that you understand the potential risks and benefits of participating in a clinical trial.

Advantages of a clinical trials.

    • Access to a new therapy that is not available outside of the trial.
    • Access to a new therapy at no cost
    • Possibility post-trial of access to the new therapy at no cost even if not funded by the government or cancer agency
    • Being closely monitored with additional tests
    • Helping other patients, now and in the future

Disadvantages/inconvenience of a clinical trial:

    • New treatment may not turn out to be as effective as the existing therapy
    • Unexpected side effects
    • Clinical trials require that everyone be on the same dosage except for those drugs that are based on weight – for some that may mean increase side effects due to higher dosage requirement
    • Less flexibility in adjusting dosage during the trial period
    • Possibility of more tests such as bloodwork, 24hour urine collection, bone marrow biopsy etc.
    • Required to keep daily log of side effects

If you are considering a clinical trial, don’t be afraid to ask a lot of questions. The more you know about a study, the more informed your decision will be.

Some questions you may want to ask:

    • What is the purpose of this study?
    • What is the name of the new agent and pharmaceutical company?
    • Is it a Phase I, Phase II, Phase III or Phase IV study?
    • What are the requirements to participate in the trial?
    • Which other cancer centres are involved in the trial?
    • Is this a blind or double-blind study?
    • Where will the treatment take place?
    • Are any expenses covered, such as parking?
    • What will the therapy consist of? Pills, injection and/or IV. If IV, how long is the infusion and how often?
    • Has the treatment or therapy been tested before? If so, what were the results? Can I have a copy of the research paper?
    • Were there side effects that I should know about?
    • Who has reviewed and approved this clinical trial?
    • How long will the study last? How long will I be involved?
    • Who will be in charge of my care? Will I be cared for by my own doctor?
    • What treatments, tests or procedures should I expect? How do they compare with what I would receive if I didn’t participate?
    • What are the possible short- and long-term risks, side effects and benefits for me? How do these risks, side effects and benefits compare to those of the usual treatment?
    • If the study requires other medications – either as part of the treatment or for side effects – will they be supplied by the study? If not, will they be covered?

Websites listing Canadian clinical trials:

Some Common Myths and Fears of Clinical Trials

 

MYTH – Receiving placebo only or not receiving any treatment.
FACT – In studies that treat myeloma, it is unethical to receive no treatment or a placebo on its own, unless the standard of care is no treatment or observation.
MYTHClinical trials are only appropriate as the “last option”.
FACT – Clinical trials may be available for patients at every stage of their disease, including newly diagnosed patients, as well as those who have exhausted some or all of the available treatment options.
MYTH – No access to the treatment being studied when the clinical trial is over.
FACT – After the completion of a clinical trial, if the participant is still on treatment and responding, they may be offered an “extension arm” by the pharmaceutical company or sponsor of the research. This arm enables the patient to continue taking the experimental treatment. In the event that the study drug is not commercially available and there is no extension arm, physicians and research coordinators may be able to arrange for the drug to be used under compassionate access. treatment options.
MYTHClinical trials are not safe.
FACT – Volunteers who participate in clinical trials are fully informed about the risks and benefits of the study. They are usually tested and assessed more frequently due to the necessity of monitoring their safety. Specialized doctors, nurses, and other research staff will closely monitor them throughout the trial, and for a long period after the trial is finished. This is done to monitor any potential long term or “latent” effects of the study treatment. 
MYTHClinical trials are expensive.
FACT – Most clinical trials are not financially burdensome. Physicians will sometimes recommend participation in clinical trials to reduce costs for the patient. In most cases, hospitals, private organizations or pharmaceutical companies conduct trials at no expense to the patient. In certain provinces, paying out of pocket for any expenses incurred during a clinical trial is deemed unethical by their ethics boards. 

In BC we are extremely fortunate to have the facilities and expertise from oncologists/hematologists to participate in clinical trial research.  For that reason, pharmaceutical companies turn to our Province to undertake clinical trials for their new treatment against blood cancer.

Scroll to Top