FAQ and Wellness Tips
FREQUENTLY ASKED QUESTIONS
How many Canadians are diagnosed with myeloma every year?
Based on the Canadian Cancer Society ‘Canadian Cancer Statistics’ report, approximately 10 people are diagnosed with myeloma each day.
What is the survival rate with myeloma?
The American Society of Hematology (ASH) reported in 2021 the average survival is at least 7 to 10 years with some living over 15 to 20 years.
Based on the Canadian Cancer Society ‘Canadian Cancer Statistics’ report, the five-year survival for myeloma between 2012-2014 was predicted to be 44% in males and females combined. In 2021, the Canadian Cancer Society reported an impressive increase of 6% in the five-year survival of people with myeloma for the years 2015–2017, bringing the new 5-year survival rate to 50%.
Compared to other cancers, myeloma has had one of the largest increases in survival over time with a 23% point increase since the early 1990s.
The Canadian Cancer Society publishes every 2 years ‘Canadian Cancer Statistics’ report broken down by over 20 different type of cancers.
What is the average response to current treatment?
The American Society of Hematology (ASH) reported in 2021 that over 90% of myeloma patients respond to current treatment and have an average first remission of 4 years or more.
Do all people with Multiple Myeloma get a stem cell transplant?
No, some people do, and some people don’t. It depends on many factors, including your age, your overall health, how you have responded to treatments, and other issues.
Where do stem cell transplants take place in BC?
At this time, stem cell transplants for all blood cancers take place ONLY at Vancouver General Hospital (VGH).
Will I have to stay in the hospital?
No, many people are able to be outpatients and stay at home or somewhere nearby the hospital (no more than 30 minutes drive) if they don’t live in the Vancouver area. Some people may have to stay in the hospital if they develop an infection or complications.
What are stem cells?
Stem cells are the body’s primary cells. All of your cells, tissues, organs and bones are made from stem cells. Stem cells that develop into blood cells are found in your bone marrow.
What are the different kinds of stem cell transplants?
There are two major types – allogeneic and autologous. In an allogeneic stem cell transplant, stem cells are removed from another person (a donor) and given to you (the recipient). Allogeneic transplants are used for leukemia, lymphoma and other blood cancers. In an autologous stem cell transplant, you provide your own stem cells. An autologous transplant is preferred for Multiple Myeloma patients.
What are the steps for an autologous stem cell transplant?
First, you will have organ function tests to ensure your heart, lungs, kidneys, and liver are functioning normally for a transplant. Then you will receive medication, usually by injection, to help mobilize the stem cells from your bone marrow into your blood. Next, your stem cells will be collected from your blood using an intravenous line in your arm over 1 to 2 days, and the cells will be frozen. Then you will have an intravenous line (Hickman line) inserted into your chest to make treatment more comfortable.
After that, you will be given one high dose of chemotherapy with melphalan to destroy cancer cells and blood-producing cells in the bone marrow, after which the transplanted stem cells can begin to produce new blood cells. Finally, your stem cells will be thawed and returned to you via the intravenous line. Following that, you will have 1 to 2 weeks when your blood counts will be low, and you will feel weak. Then your blood cells will return to normal levels, and you will begin to feel better. You will need to visit the BMT daycare unit daily for 2 to 3 weeks post transplant for checkups including bloodwork.
How often will I have to return to the hospital after the stem cell transplant?
You will need to go to the hospital daily for checkups following the transplant for about two weeks. At each appointment, your blood pressure, temperature, oxygenation level and weight will be checked, and you can discuss any side effects or issues with a nurse. A nurse will test your blood using your intravenous line. You may also consult with a pharmacist and other people on the team. If you get dehydrated, you may be given intravenous fluids. Each appointment takes two or more hours.
Can I look after myself after a stem cell transplant?
No, you will need a 24-hour caregiver such as a family member or friend for a up to a month following the transplant.
Will I be able to drive myself to the hospital?
No, you will need someone to drive you to and from the hospital.
What are some of the side effects?
Side effects of a stem cell transplant will depend mainly on the type of chemotherapy drug given, the type of transplant and your overall health. Common side effects include infection, bleeding, anemia, digestive problems such as sore mouth, nausea and vomiting, skin and hair issues, pain, and graft versus host disease.
When will I start to feel back to normal?
Each person’s experience is different. Some people start to return to regular activities in 6 to 8 weeks, while others may need more time.
What shouldn’t you do after a stem cell transplant?
After a transplant, when your blood count is low, you need to be very careful about what you eat and make sure everything is as fresh as possible. For the first 3 to 6 months, do not eat raw or undercooked seafood such as sushi, unpasteurized milk and cheese, etc. Do not swim or go in a hot tub, and do not do gardening or woodworking for the first six months. Do not sleep in the same bed as pets or touch their litter or waste for the first six months. Before travelling via airplane, consult with your doctor.
What is the difference between a bone marrow transplant and a stem-cell transplant?
There are two different types of transplants: bone marrow transplants and peripheral blood stem-cell transplants. The difference between the two 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, 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.
Is multiple myeloma curable?
Not at this time but myeloma research is EXPLODING with innovative genetically engineered treatments such as CAR-T and bi-specifics. As of summer 2022 there are numerous clinical trials exploring the use of CAR-T or bi-specific as later line first line or relapse therapy. These new treatments are changing the landscape of myeloma and giving hope that a cure is possible or at the very least become a manageable chronic disease . not a cure then myeloma aMultiple myeloma is treatable and often controllable but not yet curable. Stem cell transplant and maintenance therapy can eliminate the cancer temporarily. Sometimes, remission can even last for years, but eventually, myeloma will return. Maintenance therapy aims to prolong the amount of time people are free of myeloma to preserve a high quality of life and ultimately extend survival. Much progress has been made, more treatments are available, and myeloma patients are living longer and better lives.
Is myeloma difficult to diagnose?
Myeloma is often difficult to diagnose because early symptoms can be vague, such as bone pain and fatigue. Because myeloma symptoms often mimic symptoms of aging, many patients are advised to control their symptoms through rest, analgesics, or physiotherapy. This can lead to delayed diagnosis and increases the chances of complications (i.e. bone fractures, kidney damage). Common myeloma symptoms include persistent bone pain or fractures (i.e. spine, ribs, hips, pelvis, shoulders, skull); frequent, recurring or persistent infections; weakness, fatigue, and shortness of breath.
How common is multiple myeloma?
Myeloma is the second most common blood cancer. Ten Canadians are diagnosed with myeloma every day.
What is the incidence and prevalence of myeloma?
In 2020, an estimated 3,400 new Canadian cases of multiple myeloma will be diagnosed. The majority of myeloma patients (male and female) are diagnosed between 70-80 years of age, with the most frequently reported age of diagnosis being 70. Individuals under the age of 45 only comprise around 4% of myeloma cases diagnosed in Canada per year.
Who is at risk of developing multiple myeloma?
Men are more likely than women to develop multiple myeloma. The disease is most frequently diagnosed in 65- to 74-year-olds, although the diagnosis rate in younger adults is increasing. Myeloma is twice as common in people of African descent.
What causes multiple myeloma?
We know that multiple myeloma develops when gene “errors” occur in the DNA of plasma cells (a type of white blood cell produced in the bone marrow), causing them to multiply uncontrollably and overproduce one type of antibody (immunoglobulin).
Despite the tremendous amount of work devoted to research, we don’t yet know the cause or why the gene errors occur. Current knowledge suggests possible associations between myeloma and a decline in immune function, genetic factors, and environmental factors. Most people who develop myeloma have no apparent risk factors. The causes of myeloma are likely to be unique to each patient and may result from complex interactions between several factors.
Should I get a second opinion?
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. 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. Learn more about “getting a second option” on this website.
It’s natural to wonder, why me? You’re likely feeling many emotions right now. You may feel angry and wonder why is this happening to you? You may feel frustrated that things are slipping out of your control. But don’t blame yourself: getting multiple myeloma isn’t your fault. As a bit of time passes, you will find that most aspects of your life and activities will continue.
Is melanoma the same as myeloma?
No, melanoma is a skin cancer and an entirely different disease. Multiple myeloma is a blood cancer, specifically of the plasma cells.
Will I lose my hair?
Cancer treatments can cause hair loss and other temporary changes to how you look and feel. The following information and resources might help:
BC Cancer Look Good Feel Better program: these no-cost programs help women living with cancer learn special cosmetic techniques and tips on wigs and head coverings to help them cope with the appearance-related side effects of cancer treatment. In addition, a wig consultation and stylist service may be available.
To learn more or find a workshop in your area, call 1.800.914.5665 or visit Look Good Feel Better website
Canadian Cancer Society office and Cancer Lodge may also have wigs to borrow or free head coverings for patients. Canadian Cancer Society 1-888-939-3333.
For more information on hair loss services visit “BC Cancer Services” listing on the “Resources” page of this website.
Fellow myeloma patients provide the tips contained in this section. These tips are not meant to replace the advice of your medical team. Please consult your health care professionals before taking any advice or suggestions.
- Fatigue – expect fatigue for 6-8 weeks or more
- Mouth Sores – to avoid mouth sores: fill your mouth with ice chips the entire time you get Stem Cell Transfer infusion. If you can talk, you don’t have enough ice chips in your mouth!
- Plastic utensils – use plastic utensils to reduce mouth irritation
- Stay hydrated – hydration is important: drink 3 L water daily. Especially when on medications.
- Feeling cold – you will probably be cold, as your hemoglobin will be very low. Your head may be continually cold so take a toque. Take layers of warm clothes, fuzzy socks and a cozy blanket or two. If you have access to a clothes dryer, the blanket can be heated up for comfort.
- Occupy yourself – 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 to pass the time. Audible app – listening to books can be helpful during treatments & recovery.
- Exercise – try to get some exercise every day: walks, stretching/yoga, swimming.
- Beware: green tea, turmeric, and grapefruit juice may interfere with chemo effectiveness.
- Protect yourself – limit or avoid exposure to plants & animals to prevent the risk of infection. Do not visit gardens, farms, or tulip festivals etc., following a transplant.
- Identify yourself – Following your transplant, it is recommended that stem cell transplant patients wear a medical bracelet indicating their requirement for “irradiated blood products only” in case a blood transfusion is ever required.
- Communicate with your BMT health team – the side effects of a transplant seem to be different for everyone. You must let your nurse know what you are suffering. Do not minimize any effects, as there are things that can be done to lessen most side effects. There is no benefit in being “a stoic patient.”
It is important to drink lots of water, which helps to aid & regulate digestion, lubricate joints, make saliva which helps with digestion, balance your body’s chemicals, deliver oxygen to your body, and regulate body temperature.
Oral hydration solutions such as hydrolyte can be beneficial to improve your body’s electrolytes and glucose balance and increase your energy level.
Exercising during chemotherapy or stem cell transplant
It is very important to continue to exercise to maintain your strength and circulation and help lessen the side effects of your treatments. Daily walks improve and maintain your cardiovascular health, mental health, and endurance, which are known to decrease cancer related fatigue.
If you feel nauseous or unwell, do what you can, but here are some suggested exercises after being discharged from the hospital:
- Marching on the spot is good to keep strength and balance – lift foot approximately 6inches off the ground – make sure to 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 neighbours 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
- It is very important for recovery to eat, even when not interested in food.
- Try frequent small meals or snacks
- Drink lots of water: 2-3 litres per day
- Juicing, smoothies, and shakes may help to increase nutritional intake
- High protein energy drinks such as Boost or Ensure may help
- High-calorie snacks like avocados/guacamole, energy balls, ice cream, milkshakes
- Popsicles & rice crackers might help
- Cannabis can increase appetite
- Watch the food network
- To help with bone pain, take extra-strength Tylenol every 4-5 hours. Consult your doctor.
- Do not take Advil as it can lead to kidney problems
- Drink lots of water to avoid cramps and pain.
- Magnesium may help with the pain, but to avoid side effects of diarrhea, magnesium glycinate may be preferable to magnesium citrate or gluconate
- Heating pad or ice may help.
- Request a prescription for codeine to have on hand in case of need.
- Some people take Claritin to ease bone pain side effects of Neupogen injections. Please consult your doctor.
- Try medical cannabis (CBD) for pain.
- Exercise regularly – moving your body will keep your bowels moving, too.
- Check your diet – eat more fiber
- Stay hydrated
- A cup of coffee in the morning can help
- Adjust your toilet posture – squat, raise your legs or lean back can help
- Supplements or foods containing prebiotics, like bananas and oatmeal, and probiotics, like yogurt and fermented foods, may help.
- Start moving first thing in the morning.
- Massaging your stomach may encourage bowel movements
- Over the counter constipation remedy such as RestoraLAX can help.
- keep a log of daily bowel movements to track whether you’re having less bowel movements than normal.
As a last resort take laxatives – this should be for short term only.
- Stay hydrated – 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 to much too fast as may cause stomach pain. Drinking a sip every 10 minutes may work for you. Drink 1 full glass of water right after a loose bowel movement.
- Keep a log – track your daily bowel movement – severe diarrhea means 6 to 8 bowel movements (loose or not) a day.
- Oral hydration solutions – take oral hydration solutions such as hydrolyte to improve your body’s electrolytes and glucose balance.
- Imodium – Imodium has shown to be effective in reducing diarrhea but may also swing you to constipation – half a pill every morning may wok for you.
- Fiber supplements – finer supplements such Metamucil 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.
- Prescription medication – prescription medication such as Olestyr (cholestyramine – a bile acid sequestrant) can reduce diarrhea.
- Prescription medication – prescription medication such as Lomotil can reduce the pain/cramps associated with diarrhea.
- 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.
- Visit the Look Good Feel Better website
- Visit the BC Cancer website
- Additional information can be found under our Resources – Other Local Services – Vancouver Area Hair Loss Services.
- Keep the dressing over the IV line DRY at all times.
- 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.
- Use cling wrap or silicon patch that is slightly sticky on one side, allowing it to cling to your skin and to itself (buy at a grocery store).
- 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 in the event of it getting wet
- To increase comfort, 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.
- Take short naps of 15-20 minutes during the day.
- By being active during the day you will get a better nights sleep.
- Wake up and go to bed at the same time every day.
- If you’re looking starting with natural supplements before taking prescription sleeping pills consider:
- Cannabis THC – gummies seem to work best.
- Melatonin supplement can be very affective for insomnia
- If sleep is still challenging you can 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, sound with ear plugs and/or sleep mask.
- Wake up and go to another room to read or relax if you are tossing and turning in bed. Stay there until you feel sleepy and return to your bed.
- Consider sleeping alone on your dexamethasone nights.
- Some feel taking dexamethasone at night as opposed to morning lessens its side effects. Note dexamethasone should be taken with food.
- Try THC for sleep and CBD for pain and anxiety.
- Hops can be steeped to make tea, which can help with insomnia. Check with your doctor or naturopath to make sure its OK with medications
- Visit the BC Greenleaf Medical Clinic which offers virtual appointments with a specialist and excellent webinars/workshops
- BC Cancer Cannabis Trial: https://bccancerfoundation.com/clinical-trial-cannabis-cancer-related-symptoms
- Ice chips – fill your mouth with ice chips the entire time you get the stem cell infusion. If you can talk, you don’t have enough ice chips in your mouth!
- Rinse – rinse your mouth with baking soda & water 4-5 times/day
- Candy – suck on a hard candy during chemo infusion
- Plastic utensils – use plastic utensils/cutlery to avoid the metallic taste
- Dry mouth – for dry mouth, try Magic Mouthwash or Uncle Toms mouth wash (there is no alcohol in this one)
- Ginger Gravol
- Licorice can reduce nausea – Natural Factors DGL Deglycyrhizinated Licorice root is excellent, available in Whole Foods and London Drugs. 1 minute of chewing and nausea passes
- Coconut water
- Cannabis can reduce nausea
- Ginger, ginger ale, ginger tea
- Consider a whole food anti-cancer diet
- Juicing may help to increase nutrition
- Hydrate: drink 3 L water daily. Especially when on medications.
- Beware of green tea, turmeric, and grapefruit juice may interfere with chemo effectiveness.
- Beware of taking calcium if not in remission. Check with your doctor.
Inspire Health offers free nutritional programs and webinars for people with cancer. Visit Inspire Health for class schedules.
Repeat a personal mantra to keep positive thoughts in mind and push fear and anxiety away.
For example, I am strong; I am resilient; I am safe; I am brave; I’ve got this; I can do this; I am not alone.
- Oatmeal shampoo & moisturizer, Biotin, Argan oil, Calamine lotion
- 1% cortisone cream
- Tea tree oil
- Gas, diarrhea and constipation can all cause unpleasant stomach pain. A heating pad may alleviate the discomfort.
- Stay hydrated.
- Drink spearmint or ginger tea.
- Apply heat via a heating pad
- Avoid carbonated beverages.
- Drink liquids at room temperature, not too hot or too cold.
- Avoid foods known to cause excess gas.
- Avoid artificial sweeteners.
- Eat slowly and chew your food well.
- Don’t chew gum.
- Don’t smoke or chew tobacco.
- Don’t hold in gas/farts….let it rip and blame the dog.
- For severe stomach pain, ask your doctor for pain relief medication such as Buscopan.
Naturopathic remedies and supplements:
- Mistletoe as a subcutaneous injection and an IV infusion may help control light chains. Consult your doctor.
- Some patients have tried supplements including reishi mushrooms, alpha-lipoic acid, curcumin, coenzyme Q-10, vit c & d, and cannabis to relieve various symptoms. Consult your doctor.
Do not take calcium supplements without first checking with your doctor, as myeloma can increase blood calcium, and too much calcium in the blood can be unhealthy.