Understanding Myeloma

WHAT IS MYELOMA

Simply put, it’s a blood cell gone crazy, multiplying and crowding out the other blood cells.  Although not yet curable, it is treatable.

 

According to 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

Myeloma causes a specific type of white blood cell, called a plasma cell, to over-produce. It sounds harmless, especially because plasma cells normally protect us from disease and infection by creating antibodies.  However, too many plasma cells can cause a number of problems in your body. If you have myeloma, your plasma cells may make up 10% or more of your bone marrow (the spongy inner core of bones) instead of the normal 2% to 3%, causing suppression of other types of blood cells that you need, such as red blood cells, white blood cells or platelets. This is why myeloma is sometimes referred to as a ‘blood and bone cancer’

Myeloma is derived from the Greek words “myel” (meaning marrow) and “oma” (meaning tumor).  Myeloma is one of three most common form of blood cancers following leukemia and lymphoma. 

The malignant or crazy plasma cells usually pump out only one type of plasma protein, called monoclonal protein or M-Protein or M-Spike, instead of the variety of immunoglobulins or antibodies that they are supposed to produce. Monoclonal means that there is only one type of this abnormal protein. Note that the word M-Protein is not listed as a line item on your bloodwork report but is part of the monoclonal or paraprotein band result which is found in the ‘Protein Electrophoresis’ section under comments or patterns of your bloodwork report.  Our goal is to have no detectable monoclonal or paraprotein protein band. For additional information on bloodwork go to “Understanding Your Bloodwork” section on this website or download Myeloma Canada info guide.

 

Plasma cells are an essential component of the body’s immune system because they produce antibodies. People with active myeloma can develop complications such as anemia (low blood hemoglobin), renal insufficiency (kidney disease), or excessive levels of calcium (hypercalcemia) in the blood. Lytic lesions or soft spots of the bone can appear on x-rays, MRIs, CT scans or other imaging. These lesions weaken the bone, causing pain and increasing the risk of fractures.  These weak bones are sometimes referred to as ‘mushy’ bones. The disease is also called ‘multiple’ myeloma because the invading myeloma cells often cause multiple areas of damage to the bones. These areas are known as osteolytic lesions or lytic bone lesions for short. There is no difference between the terms multiple myeloma and myeloma.

 

Unlike most cancers, myeloma does not exist as a lump or a tumour. Instead, abnormal plasma cells, known as myeloma cells, multiply in the bone marrow and affect places in the body where bone marrow is normally active, such as the bones of the spine, skull, pelvis, ribs, shoulders, hips etc. Sometimes these myeloma cells can collect in a single bone and form a tumour called solitary plasmacytoma.  These tumours are often successfully treated with radiation therapy, although solitary plasmacytoma often progresses to myeloma. For more information, join the solitary plasmacytoma Facebook Group.

 

One of the frustrating realities of this disease 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 is increasing which is a good thing. It is important to note that the interpretation of the terms ‘relapse’ and ‘remission’ may vary between patient, healthcare professionals and researcher papers.  Healthcare professionals and research papers usually refer to ‘remission’ when disease is under control with treatment.  Some patients interpret the term ‘remission’ to mean when disease is under control without treatment.  With respect to the term ‘relapse’, healthcare professionals and research papers usually refer to ‘relapse’ as the reappearance of the disease following treatment, whereas some patients interpret ‘relapse’ to mean reappearance of the disease after having no treatment.  With that said, it is important to ensure that everyone is on the same page during conversations.   Refractory means when a patient is unresponsive to therapy. 

For more scientific information, go to:

The risk of developing multiple myeloma increases as people get older. Less than 1% of cases are diagnosed in people younger than 35. Most people diagnosed with this cancer are at least 65 years old with men being slightly more likely to develop multiple myeloma than women.  Every day ten Canadians are diagnosed with myeloma, and thousands each year, yet despite its growing prevalence, the disease remains relatively unknown. While there is no cure, myeloma patients are living longer and better lives thanks to significant improvements in treatment options. The cause or causes of myeloma remain unknown but research is working to change that.

For the latest myeloma statistics in Canada see page 24 of the  2021 Canadian Cancer Statistics 

It is important to know that there are numerous variations (subtypes) of myeloma and there is no ‘one treatment fits all’. In myeloma, abnormal plasma cells (myeloma cells) produce an unusually high number of only one of the type of antibodies – or immunoglobulins. The specific type of immunoglobulin that is overproduced by myeloma cells can vary and determines the subtype of myeloma that you have.

 

When plasma cells are exposed to foreign substances (antigens), they produce different antibodies called immunoglobulins. Antibodies are made up of two parts: heavy chains and light chains. When myeloma progresses, the myeloma cells start to produce more light chains than heavy chains. In general, the higher the free light chains, the more aggressive the disease is.

 

There are two types of light chains: kappa and lambda. Your doctor will watch closely the rise of either the kappa or lambda count.  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.

 

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 one of many indicators to assess how your body is responding to treatment. 

Once active multiple myeloma has been diagnosed, some doctors will determine the stage or extent of the disease.

Knowing the stage of the disease can help doctors understand how severe the condition is, and to establish a customized treatment plan and prognosis (an estimate of how the disease will progress).

Several systems are used to stage active myeloma. The two main systems are the International Staging System (ISS) and the Durie Salmon Staging System. 

In both systems, active myeloma is staged according to its extent at diagnosis. There are three possible stages, referred to as Stage I, Stage II and Stage III, in order of increasing disease severity. Note that doctors in BC don’t typically use or discuss the stages of myeloma.  It appears to be more of an American practice.

Conditions such as MGUS, smouldering myeloma, and solitary plasmacytoma are often precursors to myeloma.

 

  • Monoclonal Gammopathy of Undetermined Significance (MGUS) is generally a benign condition where M-protein (paraprotein) is present, but there is no underlying disease (i.e. no anemia, renal failure, excessive calcium in the blood, no bone lesions). Although there may be more abnormal plasma cells than usual in the bone marrow, they account for less than 10% of the blood cells. MGUS can, however, be a precursor to myeloma.

Action – regularly monitored via bloodwork but not treated.

 

  • Smouldering Myeloma (Asymptomatic) is a transitional state between MGUS and active/symptomatic myeloma. M-protein is present in the blood and/or urine, and there are abnormal plasma cells in the bone marrow, which may account for 10-59% of blood cells. There are still no symptoms or organ damage. However, smoldering myeloma can be a precursor to myeloma.

Action – regularly monitored via bloodwork and treatment may be required.

 

  • Plasmacytomas: Sometimes, myeloma cells collect in a single bone and form a lesion or tumor called a solitary plasmacytoma of the bone. Occasionally, a plasmacytoma can affect soft tissue areas outside of the bone and bone marrow (called an extramedullary plasmacytoma). Most patients with solitary plasmacytoma eventually progress to active myeloma.

Action – regularly monitored via bloodwork and usually treated with radiation therapy.

Plasmacytoma is a rare disease and it is difficult to find information or to connect with other patients. Fortunately, there is now a Facebook Group specifically for Solitary Plasmacytoma patients.

Early myeloma symptoms can be vague, such as bone pain and fatigue.  Perhaps due to their age, patients are often advised to manage their symptoms through rest, analgesics, or physiotherapy. The lack of awareness amongst health professionals and the general public also can affect interpretation of the patient’s symptoms. It is not unheard of to be diagnosed with myeloma 12 to 24 months after first reporting the symptoms to a doctor. 

 

This delayed diagnosis increases the chances of complications, such as bone fractures and kidney damage which can affect a person’s quality of life and survival.  What is frustrating is that myeloma can be detected by doing a simple blood test.

 

 

Common myeloma symptoms include:

  • Persistent bone pain or fractures (e.g. spine, ribs, hips, pelvis, shoulders, skull)
  • Frequent, recurring or persistent infections
  • Weakness, fatigue, anemia, and shortness of breath
  • Less common symptoms may include abnormal bruising or bleeding (i.e. nose, gums, gastrointestinal), blurred vision or headaches, neurological problems such as peripheral neuropathy.

Note: not all people with myeloma will have all, or even any, of the above symptoms and complications.

Sometimes myeloma is found following a routine blood test or imaging for a suspected fracture or broken bone. Most of the symptoms and complications of myeloma result from the excessively high number of plasma cells in the bone marrow and the presence of M-protein (also referred to as monoclonal protein, paraprotein, M-spike, or M-peak) in the blood or urine.

 

For additional information on “Understanding Myeloma” please visit www.myeloma.ca or www.myeloma.org

MYELOMA DIAGNOSIS

Everyone reacts differently to a myeloma diagnosis. 

 Your first question may be “Why me?’ followed by ‘How do I spell myeloma’ or ‘I have melanoma – skin cancer?’

You probably feel a sense of shock, and may even feel overcome or numb; all of these feelings are entirely natural. You may also feel anger, frustration, or a slight relief because you’ve finally found an explanation for your tiredness and /or body pain. There’s no question about it……a myeloma diagnosis sucks!

 

This new diagnosis will bring many questions.  You will learn a lot about myeloma in the weeks and months following diagnosis. Do not worry, over time you will understand more about the disease and know what you can do to optimize your quality of life. Learning about myeloma will help you cope with all the feelings that come with a diagnosis. It may even give you a feeling of being in control when so many things are out of your control.  You might also feel like you have to act as quickly as possible, like it’s an emergency. Take your time; it will take a while for everything to make sense. Don’t try to absorb too much too soon.

The journey you are facing will be challenging and uncertain but you do not have to do it alone. This is the time to ask for help. There are people to help and support you: some are in your home or community like our Vancouver Myeloma Support Group, and others are at your hospital, cancer centers, or place of worship. Remember that you are never alone.

Visit Myeloma Canada website for a list of other Myeloma Support Groups in BC.

It can also be beneficial to find out more information about myeloma, to understand your diagnosis more clearly, and to help formulate questions for your doctors. Remember knowledge is power!  Studies show that patients who learn more about their disease and are more actively involved in their medical care, have a better quality of life. Some studies even suggest they may have better outcomes as well. Knowing more about myeloma will also help you talk with your family, as they also try to understand the disease.

When researching on the internet, make sure you look at reputable websites such as:

There is a lot of information to absorb. Don’t expect to be able to understand or remember all of it. Focus on the most relevant parts to your current situation, and return whenever you have questions, are unclear about something, or want to learn more.

 

For emotional well being, some patients consider writing a blog about their journey and experience so they can share with friends and family. Or, they ask a friend to post updates to a personal web page or send a group email. This is also an excellent way to record your progress and process information from your doctor’s appointments.

FERTILITY PRESERVATION OPTIONS

Fertility preservation options are dependent on a couple of factors:

    • How ill you are at the time of diagnosis
    • How much time you have before you start treatment

Potential Options to Preserve Fertility before Treatment for Females

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

Potential Options to Preserve Fertility before Treatment for Males

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

Before Treatment Options for Females

    • Embryo freezing – This involves about 10 days of hormone injections to stimulate the ovaries followed by retrieval of mature eggs performed under anesthesia. The eggs are fertilized in the laboratory with sperm from a partner or donor to create embryos (IVF or in vitro fertilization). The embryos are then frozen and stored for possible future use. Embryo freezing is the option with the highest likelihood of success for females. The process typically takes at least two to three weeks.
    • Egg freezing – This involves about 10 days of hormone injections to stimulate the ovaries, followed by retrieval of mature eggs performed under anesthesia. The eggs are then frozen and stored for possible future use without being fertilized. The process typically takes at least two to three weeks.
    • Ovarian tissue freezing – Girls who have not yet gone through puberty have no mature eggs, and women who must start treatment quickly do not have the two to three weeks required to undergo egg or embryo freezing.  However, they may be able to undergo a procedure in which part of the ovary (or the entire ovary) is removed and frozen for possible future use. Only a small number of pregnancies have resulted from re-implanting tissue, and this may not be safe for patients with certain types of cancer. Further research is needed.
    • Ovarian transposition surgery – If the ovaries will be in the radiation treatment field, patients may undergo this minor surgical procedure in which a doctor moves the ovaries outside of the radiation field to minimize exposure and radiation damage.
    • Gonadotropin-releasing hormones (GnRHs) – This is a medication used during chemotherapy to suppress ovarian function and possibly protect the eggs from damage. Further research is needed.

Before Treatment Options for Males

    • Sperm banking (cryopreservation) – This involves the collection of semen through masturbation. If there are sperm in the semen, it is frozen and stored for possible future use. This is the fertility preservation option with the highest likelihood of success for men.
    • Electroejaculation – For males who are unable to ejaculate by masturbation because of, for example, religious beliefs, pain or embarrassment, semen can be collected under anesthesia. An electrical current is used to stimulate ejaculation.
    • Testicular sperm extraction (TESE) – For males who have no sperm in the semen specimen, this surgical procedure performed under anesthesia can be considered. The doctor removes pieces of tissue from the testes, which are then examined for mature sperm. These can be removed from the tissue and frozen for possible future use.
    • Testicular tissue freezing – Boys who have not yet gone through puberty do not produce mature sperm, so they cannot sperm bank. They may be able to undergo an experimental surgical procedure in which a doctor removes tissue from the testicle to be frozen for possible future use. This technique, however, has not yet resulted in a pregnancy. Further research is needed.
    • Radiation testicular shielding – If the testes will be exposed to radiation, the doctor may be able to cover them with external shields. This must be planned before treatment begins, and the shields must be used each day of treatment. Not all patients will be able to use shields, as sometimes there is a need to treat the testes with radiation.

 
Potential Options for Having a Family after Treatment

    • Use of your frozen sperm – Depending on the number of vials you have stored and the number and quality of the specimens, the frozen sperm may be used for artificial insemination (the injection of semen into part of the female reproductive tract by a method other than sexual intercourse). Often your female partner can undergo an IVF cycle to remove mature eggs so they can be fertilized in the laboratory with your sperm. The embryos created are then transferred to her uterus.
    • In Vitro Fertilization (IVF) – If you have a low sperm count, your female partner can undergo an IVF cycle to remove mature eggs so they can be fertilized in the laboratory with your sperm. The embryos created are transferred to her uterus.
    • Testicular sperm extraction (TESE) – If no sperm are present in your semen, this surgical procedure performed under anesthesia can be considered. The doctor removes pieces of tissue from your testes, which are then examined for mature sperm. If sperm are found, your female partner can undergo an IVF cycle to remove mature eggs so they can be fertilized in the laboratory with your sperm. The embryos created are then transferred to her uterus.
    • Donor sperm – Sperm donated by another man are used to produce a pregnancy through artificial insemination. 

BC Cancer patients can contact the Power of Hope organization for more information, support and financial assistance.

Local fertility clinics:

ADVOCATE FOR YOURSELF

Advocating for yourself as a cancer patient simply means to take an active role in your diagnosis and treatment plan. It means you understand your diagnosis, have considered the risks and benefits of treatment options, and choose a treatment that fits best for you as an individual.

With advances in myeloma treatment, there are more and more options available. Remember it’s MYeloma.  It’s you living with myeloma, and only you know how aggressive you wish to be with treatment, and what side effects you are willing to tolerate. 

Honouring yourself means not only making the decision that is right for you alone but being able to cope with the opinions of others who may differ in preferences.

Myeloma Canada has created a tool/app called ‘My Myeloma Decision-Making Guide’ which assists you in mapping out your thoughts and emotions, as well as identifying and understanding what’s important as you evaluate your myeloma treatment options. Making educated choices by considering your priorities and concerns will give you the knowledge that you are making the right decision for you, together with your healthcare team.  Myeloma Canada also has a useful Advocacy Handbook.

Medical Record Keeping

During your myeloma journey you will have a lot of tests and procedures and be presented with a lot of lab results, which may be overwhelming. It is critical to be an active member of your health care, and ask questions to understand the information.

 Don’t be afraid, embarrassed, or hesitant to ask for exactly what you need from your team.  It’s important to be involved in and be vocal in the decisions that affect you. 

If possible, bring another person to be a second set of ears at your doctor’s appointments.  You may find yourself misinterpreting comments made during appointments due to your potential heightened level of stress and/or anxiety.  Ask your caregiver to take notes at your appointments so that you can refer back to the information and share details with family and friends.

 

It can be useful to create a personal health binder with all your medical records, information, test results, treatments, consultations etc. We recommend you bring those records to every appointment as an easy reference when discussing your progress with your health team, or with someone unfamiliar with your medical history including 2nd opinion physicians.

 

Keep records of your medical history and experience:

  • Create a binder for all your test results & consultations
  • Keep copies of all your test results (blood & urine tests, imaging tests)
  • Create a spreadsheet to track key information from blood work reports such as:
    • M-Protein – monoclonal band number
    • Total Protein count
    • IGG count
    • Dates
  • Create a spreadsheet to track dates of diagnostic tests such as:
    • Xray
    • Scans
    • Biopsy
    • Bone density test
  • Prepare for each appointment with a list of questions
  • If possible, have someone join you for appointments to take notes
  • Keep details of medications you are prescribed (dosage, schedule, side effects)
  • Keep a record of any side effects or symptoms (pain, fatigue)
  • Record dates of any serious complications such as pneumonia, influenza etc.
  • Record dates of any immunizations such as COVID vaccines, flu shot etc.

Here is a simple spreadsheet Bloodwork Tracking (Document #2) created by one of our members to track your blood results. 

For a more interactive, personalized tool, we suggest using Myeloma Canada’s award-winning app designed specifically to help you organize, track, manage and understand the changes that occur throughout different stages of your myeloma journey.

Access to Your Medical Records

Under BC law, the information included in your medical records belongs to you.

Keep your records of all your medical history and treatment. Many patients find it helpful to keep a binder to write down all their appointments and treatments, who treated them, what medications they received, and their test results.

It is highly desirable to stay current on the status of your condition, and therefore familiarity with the medical reports from your tests is very beneficial. In addition, reviewing your recent test results before a consultation with your physician is an excellent way to formulate questions for them.

You can request a faxed (or e-mailed) copy of your test results and doctor’s clinical notes from your physician’s office as well as CD’s of medical imaging (such as CT scans, MRI’s, etc.) from the testing facility itself, sometimes for a small fee in the case of CD’s.  

Either you or your authorized representative can request to have access or copies of your health records by completing the Authorization for Release of Health Records form and submitting it in person, by fax, or by mail to the Health Record Department at the location where you received care. You can also phone them at 604-877-6000 ext 672334 or fax 604-877-0702.

See the following links for more information on your right to see your records and your physician’s responsibility to keep your medical records confidential.

SHARING YOUR DIAGNOSIS

One of the most challenging things about getting a cancer diagnosis is telling family, friends, and colleagues. You may be asking yourself what to do or how much to reveal. Some people with cancer choose to tell only their loved ones. Others find it helpful when other people they have regular contact with also know about their diagnosis. You may find it best to tell one or two people and then ask them to explain it to others you feel will need to know.  Do you invite a group for coffee to share the news?  Do you tell people by phone, text, Facebook Page rather than face-to-face?

 

Just know that there is no right or wrong way to share your diagnosis. Whatever you decide will be the right decision. But also know that you will need support throughout this journey.

Talking about myeloma with those closest to you can be a great source of support and help, and can keep you from feeling isolated. Your partner, family and friends may feel anxious about you and concerned about upsetting you by asking too much. They may also want to know how they can help.

 

Here are some suggestions to help you talk about your cancer with your family and friends:

  • Make the first move by telling people about your myeloma diagnosis. People may be unsure of what to say or afraid to ask questions that may upset you.
  • Since myeloma is a somewhat unknown cancer, you will need to explain what it is. Here’s one simple explanation:
    • Simply put, it’s a blood cell gone crazy, multiplying and crowding out the other blood cells. Although not yet curable it is treatable. 
    • Myeloma, leukemia and lymphoma are the 3 top blood cancers.
  • Try to have a private, quiet conversation without distractions or interruptions. It may be helpful to have someone with you who already knows about the diagnosis.
  • Speak at a level that others can understand, especially when speaking with children.
  • Give information in small amounts and check to make sure the person understands.
  • Don’t worry about moments of silence. You may find that holding hands or sitting together quietly says more than words.
  • Be as honest as possible about your feelings. Friends and family may feel many of the same emotions that you have.
  • Let them know what to expect during your treatment and what you expect from them.
  • If others want to help you, let them know how.
  • Be prepared for difficult questions.
  • Encourage family members to speak to your healthcare team about their questions or concerns.
  • Remember that you are not alone.

Consider creating a personal blog where you or your caregiver can post regular updates for friends and family to read. This is an excellent way to record your progress and process information from your doctor’s appointments.

If you are feeling a sense of detachment or isolation even if you are surrounded by friends and family who care for you, connecting with someone who’s been through a blood cancer may give you the reassurance you need. There are numerous support groups such as our Vancouver Myeloma Support Group that patients find very helpful.

 

Note that everyone reacts differently when they are told about a loved one’s cancer diagnosis, especially one that is incurable. Everyone around you is entitled to all their feelings about your diagnosis, just as you are, but if you are feeling overwhelmed by someone else’s response, it is ok to say, “This is too much for me right now”, or “Maybe it’s best if you speak to someone else about how you’re doing, I’m quite overwhelmed myself right now”. 

 

At times it may be necessary to limit contact with certain people or have help from a friend or family member to do a bit of “gatekeeping” around who is in touch with you. One member told her family and friends that they can cry only once in front her.  Her attitude was “No Debbie Downers”.  Whatever you do, know that the decision of “what, where, when and with who” you share your news, is yours and yours alone to make. 

Talking to children about your cancer can be very difficult and may be upsetting for both you and the child. However, involving children in the situation and letting them know what is happening in the early stages can help you and them to cope better.

Children can sense when something is wrong. If you try to protect them by saying nothing, they may fear something worse. Not knowing things can make children feel anxious.

We cannot stop them from feeling sad, but if we share our feelings and give them information about what is happening, we can support them in their sadness. Dealing with cancer in the family can allow children to learn about the body, cancer, treatment and healing.


Like adults, they will want to help.  Depending on the age of the children, you can ask them to participate in the journey by going wig shopping or finding a special blanket or tote bag that’s only used when you go to the hospital for treatment.  You could also have them join you for a treatment so they see where you go to get better.  Remember children are curious.

 

Recommended Myeloma Books for children:

  • Kelsey and the Yellow Kite – This book was written to help explain what myeloma is to children. Kelsey and the Yellow Kite tells the story of a little girl called Kelsey whose dad gets myeloma. It explains what myeloma is in very simple terms and is beautifully illustrated by Christine Battuz.
  • Alex and the Bravest Dad in the World and Alex and the Bravest Grampa in the World are myeloma storybooks about a young lion who enjoys playful adventures with his father/grandfather. He becomes puzzled and upset when his father/grandfather is forced to slow down due to a relapse of multiple myeloma. Multiple myeloma is a disease characterized by periods of relapse and remission, and the book explains that Alex’s father/grandfather will experience periods of high and low energy. These are explained in a straightforward and non-frightening way, as are concepts such as plasma cells and cancer itself. There’s even a glossary toward the end of the book. The Multiple Myeloma Storybooks are available to download for free.

Finding out that a friend has been diagnosed with myeloma is scary and overwhelming.  Do not be afraid to talk with your friend. It is better to say, “I don’t know what to say” than to stop calling or visiting out of fear. 

Here are some tips to help you show your support:

 

Practice active listening. This is a technique that professionals use to show respect. It is a helpful way for you to show that you are connecting to the person’s words and feelings. To be an active listener give your full attention, avoid thinking about what to say next, or hurrying the conversation and forcing it to a conclusion.

Use caution when asking questions. Phrase your questions carefully and consider the number of questions that you ask in a conversation. Your friend has probably been asked many questions by other friends and family members, which can become tiresome for them.

Make sure it is okay to give advice. Before you offer any advice, ask if it is okay and be prepared to stop if you are not encouraged to continue. If you feel prompted to make a suggestion, ask for the person’s permission to share it before proceeding. Unsolicited advice may cause unnecessary stress. Remember your friend has just been told they have an incurable cancer.  They are most likely feeling like “a deer in the headlights” and not quite sure what to do.  Asking lots of questions such as whether they will choose traditional or non-traditional treatment or sharing stories of people you know who have myeloma will only add to their stress.

Be honest about your feelings but do not overburden. Communicate feelings you may be experiencing—such as fear, anxiety, anger, or disbelief is ok, but try to be brief in your explanations. Spending too much time expressing difficult emotions you are feeling may overwhelm and upset your newly diagnosed friend. Remember it’s not about you.  If you struggle to maintain your composure, give yourself some time away to calm your feelings before talking again. You may find that meeting with a counselor helps you process and manage your emotions.

Talk about topics other than cancer. Talking about usual topics may help provide a sense of balance. The intent is not to distract your newly diagnosed friend or family member, but to help him or her maintain usual interests and connections and take a break from difficult conversations.

Take your cues from your friend. Ask your recently diagnosed friend if they would like to talk about the diagnosis. It is best to allow him or her to decide when to talk and how much to share.

Show support without words. Your body language and facial expressions can also convey your message of care and support. Keep eye contact, listen attentively, and avoid distractions when talking. One important way to provide support is to share some silence without needing to drown it out with chatter.

Choose your words carefully. Make sure to acknowledge how difficult this experience is for your recently diagnosed friend. Carefully choosing what you say can help you show your support without being dismissive or avoiding the topic.

Here are examples of phrases that are helpful to show your care and support:

  • I’m sorry this has happened to you.
  • If you ever feel like talking, I’m here to listen.
  • How can I help?
  • I care about you.
  • I’m thinking about you.

Here are examples of phrases that are unhelpful:

  • I know just how you feel.
  • I know just what you should do.
  • Have you looked into non-traditional therapy?
  • I know someone else who has myeloma and….
  • I’m sure you’ll be fine.
  • Don’t worry.
  • How long do you have?
  • I called you the minute I heard but you didn’t reply.

Remember, you can communicate with someone in many different ways, depending on how he or she prefers to communicate. If you don’t see your cancer friend regularly, a phone call, text message, or video call can show that you care. Let your cancer friend know it is okay if he or she does not reply.

Before you reach out, you should prepare yourself. 

Here are some things to consider before talking to a friend who has been newly diagnosed with cancer:

  • Process your own feelings beforehand. Learning that a friend has cancer can be difficult news to hear. Take time to acknowledge and cope with your own emotions about the diagnosis before you see him or her. This way, you can keep the focus on your friend and not burden them with your feelings. Remember its not about you.
  • Learn about the diagnosis. Your friend may not want to talk about the details of myeloma for many reasons but one is they are only just learning what myeloma is and what are the treatment options. Another is it can be physically and emotionally tiring to repeat the same information to different people. If possible, your friend’s spouse or a mutual friend may be able to give you the basics on myeloma. Write it down and repeat it back to them to be sure you have the correct information. If there is information that is unknown or not shared, do not push for more.
  • Think about it from your friend’s perspective. Being sick is unpredictable. Give your friend permission to say no to a visit, and be flexible and understanding that someone who is sick may call and cancel at the last minute. If you reach out but your friend doesn’t return your phone call or email, don’t take it personally. You may also want to prepare yourself for changes in your friend’s appearance. Fatigue, weight loss, and hair loss are common side effects of cancer and the many treatments. Start your visit by saying “It’s good to see you” instead of commenting on any physical changes.

Instead of asking what you can do to help, it’s usually better to find a concrete way to support your friend or loved one, and do it. Some people may not feel comfortable asking for help, or the list of things they need help with may seem too long and overwhelming.

Here are some suggestions: 

  1. Just sit with them and listen. Don’t offer advice or recommendations unless asked. Instead, listen to your friend’s concerns, acknowledge that myeloma sucks and offer a shoulder to cry on. And if your friend doesn’t feel like talking, sit there with them quietly. There is a lot of power in simply being present. Walks are often the best way to be with someone without needing to speak. 
  1. Take care of the grocery shopping, or order groceries online and have them delivered.
  1. Help keep their household running. Cook, clean, mow the lawn, wash the laundry and/or dishes, make sure the bills get paid, get the kids dressed for school, walk the dog and do all of the things that your friend would normally do to keep life going for the rest of the family during treatment.
  1. Bring a cup of tea or coffee and stop by for a visit. Just keep in mind that myeloma treatment causes fatigue, so don’t stay too long – unless they ask you to stay longer. Sometimes offering to come over to watch a TV show or movie can be comforting.
  1. Give the primary caregiver a break. Go to doctor’s appointments in the caregiver’s place, help out with the kids or pets, organize medications, or send your friend’s partner, parent or child off for a massage or a night or weekend to unwind. This can ease the caregiver’s stress, and give him or her the energy to keep going.
  1. Drive the patient to appointments. And when treatment is over, drive them to checkups and scans. They may not show it, but cancer patients often have a lot of anxiety about these appointments even years after treatment. A friendly face and someone to talk to can make a big difference.
  1. Take notes during appointments or when the doctor or nurse stops by in the hospital. Patients’ memories can be foggy during and after treatment, and the amount of information they receive can be overwhelming. Taking notes can ensure they have the information they need later.
  1. Prepare meals or deliver takeout. Even better: organize a bunch of friends and family to bring meals for several days or weeks while your friend is in treatment and during recovery.
  1. Take care of their children. Take them to school or sports practice, help with homework, or have them over for a slumber party or playdate. This can help the kids take their minds off of cancer, and ease the parents’ stress.
  1. Organize an online calendar where family and friends can sign up for food delivery, cleaning duty or driving schedule for doctor’s appointments or for kids’ activities. Shareable online calendars can help organize activities among friends and family. You can also make a paper calendar and write in the various activities and commitments by hand. Make sure your friend has access to the calendar so he or she knows what to expect and when.
  1. Organize a phone team. Many people with cancer find that keeping friends and family updated on their latest status can be taxing at times. A phone team is where only one person in the circle of friends reaches out and then provides updates to the rest of the group. This person can also let everyone else know if the mutual friend wants more phone calls or would prefer time to be alone.
  1. Read or write your friend’s blog, web page, or group emails. Your friend may choose to write a blog about their experience so they can share with friends and family. Or, they may ask you to post updates to a personal web page or send a group email so they don’t have to repeat the information multiple times. These updates are also a great way to start a conversation.
  1. Find ways to motivate them to do what they need to do to get better, whether that’s doing their exercises for rehab, taking medications or eating more. Remind your friend and yourself that this is not a race but a marathon. Do not make them feel weak or discouraged if they don’t meet your or their expectations. Remind them “It’s not what they can’t do but what they CAN do!”
  1. Purchase or knit a cap or scarf.
  1. Make them laugh. Tell jokes. Share funny videos. Laughter really is good medicine.
  1. This gives many patients the courage to face another day.
  1. Play music. Whether you play an instrument, make a playlist or turn on some tunes, music can help everyone relax and take their minds off cancer.
  1. Stay connected. Send texts, calls, emails, cards, etc. Let them know you’re thinking of them.
  1. Give them a stack of gifts or cards, with instructions to open one each morning. This is a great way to help someone to get out of bed and brighten their day.
  1. Send fun or silly treats in the mail.
  1. Visit them in the hospital. Days can seem very long when you’re hospitalized, and a short visit from a friend or family member can make a big difference. However, hospital visits are not for everyone so do ask their permission especially shortly after your stem cell transplant.
  1. Remember that most cancer patients don’t want to be treated differently just because they have cancer. Talk to your friend or loved one like you did before. Tell jokes, talk about what’s going on in the neighborhood or at your kids’ school, favorite TV shows, etc. Talk about anything that will get their mind off things.
Scroll to Top