Living With Myeloma

MOVING FORWARD

Living with myeloma, which at this time is considered an incurable disease, can affect a person’s ability to work, independence, sexual relationship and social life. Over time, this can have long-lasting effects on quality of life and emotional wellbeing, leading to stress, anxiety, and/or depression. 

How you describe yourself and your journey through multiple myeloma is an individual choice. Many believe having a positive attitude is as important as any medical treatment.  Due to advancing research, people diagnosed with multiple myeloma today can anticipate a deep and long remission. And yes, those of us who have lived with multiple myeloma for several years can dare to dream of being cured some day. Currently, the possibility of a cure for multiple myeloma is closer than ever before. A positive attitude can begin by reminding yourself that “you are surviving cancer and no matter what, you will continue to survive.”

Having a positive attitude also means believing that one day you will be able to say “I’m a cancer survivor”.  So until then, your job is to keep living and enjoy life. 

Surviving myeloma with a positive attitude can also mean:

  • Spending quality time with friends, family, and those who mean the most to you.
  • Travelling to places you’ve always wanted to see and returning to your favorite places.
  • Spending a portion of your time doing things to help make the lives of others better through charity work or helping other cancer patients.
  • Having a purpose in life, a reason for getting up in the morning. This helps you  focus on what matters, and motivates you to leave the world a better place or empower others.
  • Planting flowers in the spring, smelling them in the summer, and raking leaves in the fall.
  • Sitting in front of a warm fire on a winter day with a good book and a nice glass of wine.
  • Recognizing you’ve been given the gift of more time with responsibilities, not only to yourself, but to others.
  • Making a ‘bucket list’ that is physically and financially attainable.
  • Posting positive statements/cards in strategic places to help you through some of those blue days. Cards that say “You Got This” or “Ain’t No Stopping You!!”
  • Keeping a ‘gratitude journal’, found in book stores, by your bed. It only takes a few minutes a day, but can have a big impact on your mood and health. Your gratitude can be as simple as “I’m grateful the sun came out.”
  • Learning a new skill, hobby.
  • Scheduling ‘me’ time every day such as doing a puzzle, going for a walk or just sitting on a park bench on a sunny day.
  • Staying positive by setting some milestones to reach, such as seeing your children/nieces/nephew graduate or get married or have kids.
  • Taking good care of yourself, both physically and emotionally.
  • Doing whatever you can to make sure that myeloma research continues so others can survive as well – paying it forward.
  • Most importantly, surviving myeloma means experiencing the best days of your life with a positive attitude.
  • Remember it’s not what you can’t do, but what you can do!!

Myeloma Canada has published an excellent resource guide entitled “Mental Well-Being & Relapse: A resource Guide for People Living with Myeloma”.  The Canadian Cancer Society also has inspiring articles on “Life after Treatment” as well as a downloadable booklet entitled “Life after Cancer Treatment”.  

INSPIRING STORIES

Year of diagnosis – 1996

Age diagnosed – 37 

Current Pastime – Founder of the Multiple Myeloma Research Foundation (MMRF) and Co-Chair; Harvard Business School Kraft Precision Medicine Accelerator 

Secret – Embracing every day with family and friends; Continue to push for change and awareness.

 

 

MY STORY (excerpts from Kathy’s story posted on her webpage

I will never forget the doctor looking at me and saying, “I’m sorry, you have cancer.” And not just any cancer, one of the lousy ones with a weird name and no reliable treatments. Three years to live. Incurable.

 

It was 1996. I was 37, with a career and a one-year-old. I panicked. I wept. I fumed. When you know you’re going to die, the cruel reality changes everything. The moments I would miss as a mother, wife, sister cascaded before my eyes. But then something snapped. I went from WTF? to WTD? (What To Do?)

 

The thing about a death sentence is it gives you instant clarity. What matters? What doesn’t? I started to write down what was most important to me: a letter to my young daughter, Nicole, in this ridiculous green journal with a flower on it. Page one: more time, beat the odds, make it to kindergarten. Page two: having a baby, leaving my husband Paul with a second child, Nicole with a sibling. And then … leaving all three of them safe, cared for. That meant moving closer to my sister, a new home, a new job – starting a foundation.

“I wrote a letter to my daughter, in this ridiculous green journal with a flower on it.”

 

What I didn’t realize at the time is that my personal quest to find a cure – steps I took to protect my husband, my child – would begin a 25-year crusade to disrupt and galvanize a bureaucratic and deeply broken healthcare system, not only changing the course of my life but the lives of so many others facing a fatal diagnosis.

 

In 1998, I founded the Multiple Myeloma Research Foundation (MMRF). There we were first to establish a collaborative tissue bank, first to sequence the myeloma genome, first to build a clinical network, first to drive data to the public domain, and first to directly share data with patients. Our work has led to 15 new FDA-approved drugs and has increased life expectancy for patients from the three years when I was diagnosed to ten years today.

 

Then in 2015, I was asked by the Dean of Harvard Business School to Co-chair the Kraft Precision Medicine Accelerator (KPMA) and drive precision medicine across all diseases. We convened more than 300 thinkers, doers, and disruptors on the front lines of business, scientific, and social change to answer one question: how can we bring better treatments to patients faster?

 

The promise of today’s science to change lives is truly amazing. And nowhere is it more amazing than in cancer: targeted therapies, immunotherapies, blood biopsies. But the hard truth is that the system remains badly broken. And fighting your way through it can be its own kind of death sentence. The greatest fear that lives in the hearts of patients is to know that a new drug out there is working… that a new field could be curative… but they may not live long enough to get it. That is a petrifying kind of terror. But I am living proof that if you take the right steps, you can buy yourself time. And with today’s science, a year can buy you a lifetime.

 

It’s been more than 20 years since I started writing to Nicole in that pink journal. Today I have over twenty journals, one for every year I never expected to live. And I’m still writing. I didn’t just see my daughter go to kindergarten, I saw her go to college and to graduate school. I didn’t just change careers, I moved closer to my sister, my rock – my biological and soul mate. And my daughter Nicole, my husband Paul and I got to go together to my son David’s soccer games, his baseball games, and his college graduation.

 

I am incredibly proud of what we all have achieved and am blessed to have a phenomenal, supportive family. But the fight continues. I face my own mortality every day, with every test result, just as every cancer patient does. And I continue to push for change where it’s needed most. To fix what is broken so others may heal. And to simplify the journey for others, so they can heal themselves.

From https://kathygiusti.com/kathys-story/

 

Year of diagnosis – 1995

Age of Diagnosis – 25

Current pastime – CEO of International Myeloma Foundation (IMF) 

Secret – Staying hopeful for a cure; Paying it forward.

MY STORY  (excerpts taken from various IMF websites)

Diagnosed at a young age of 25 with stage III Myeloma in 1995, I’ve gone from being a patient to a myeloma research advocate.  I’ve been able to successfully integrate Myeloma into my life for almost a quarter of a century. I have been associated with the IMF for over two decades. From joining a support group in the Dallas-Fort Worth area to leading that support group and forming another one in the northwest Arkansas area, to being a board member in 2015, and now, to being chosen as the CEO of the organization. 

My areas of advocacy interest include patient education, clinical trial design, quality of life improvements, drug accessibility, minority engagement, access disparities and global capacity building of patient organizations. 

After the IMF search committee chose me as the new CEO, my initial thoughts, I would say, were humility and gratitude for being alive and for being able to take on this incredible role 25 years after I was diagnosed with myeloma and was given only two to three years to live. Excitement, as this role will bring my passion, purpose, and lifelong experiences and preparation together.

For whatever reason, I have been able to live with myeloma for over half of my life. I have learned to navigate ambiguity and make decisions with sparse data. I have learned to lead with love, kindness, and empathy. I have learned to plan for tomorrow but be agile enough to tackle the unplanned occurrences of our volatile, uncertain, complex, and ambiguous world. But most importantly, I have learned to share the hope abundantly.

Being the CEO of the IMF is a privilege. I don’t see it as an arrival or a destination but as a beginning. It is a beginning to do more, to challenge myself and those around me to go faster. It is an opportunity to pay it forward as I know I’m here because of those who have traveled this past before me. That’s why I want to pay it forward and carry the baton as far and as fast as possible so those who come after me, those who come after us, can go even further. 

IMF’s mission is of improving the quality of life of myeloma patients while working toward prevention.  Making a world without myeloma or a world where no one dies of myeloma by the year 2035. 

From https://www.myeloma.org/imf-ceo-yelak-biru-looking-ahead

Year of diagnosis – 2009

Age of diagnosis – 47

Current Pastime – Board member of the Myeloma Canada & Myeloma Alberta Support Society Group; member of the Myeloma Canada’s Patient Advisory Council 

Secret – Staying positive and look for the good things in my life; Limit time around negativity; focus on the things that make me smile; Paint and cross stitch. 

 

MY STORY

My journey started in 2005 when I began to experience numbness in my feet which eventually progressed all the way up to my hips. I was referred to a neurologist and had all kinds of tests that included a spinal tap, but everything came back normal except for elevated immunoglobulins. They suspected MS, but nothing conclusive so that’s how they left it.  I began having issues with fatigue and intermittent neuropathy issues continued. After 4 years with no progress and worsening fatigue I finally asked the neurologist to repeat some of the tests and was referred to a hematologist with suspected MGUS. The hematologist did a bone marrow biopsy and it was inconclusive so referred me for a PET scan.  This was done at the cancer clinic and as the hematologist was away, I was referred to a myeloma specialist for the results. 

In September 2009, at the age of 47, I finally got a diagnosis.  In May 2010, I had a stem cell transplant. I was put on Thalidomide maintenance and after 3.5 years I experienced my first relapse when my M protein went up to 2 and was put on Revlimid.  My M protein went to zero very quickly and was stable until 2014. I was having serious bone pain in my right hip, but was told it couldn’t be the myeloma.  I struggled for a year and finally the damage was sufficient enough to show on an xray and I had to have a metal rod put into my femur. In 2016, I began to relapse again and we found a plasmacytoma in my pelvic floor. After radiation (my 5th time having radiation so far) I was put on a regimen of Daratumumab, Pomalyst, and Ninlaro. I’ve had stable disease control since then and have been scaled back to just Daratumumab. 

Except for 2 years I was off work around my stem cell transplant, I’ve been working full time with Servus Credit Union and am currently Team Lead for one of the teams in our Business Lending Support Department.  In these last 12 plus years, I’ve become a mother in law and a Grandma.

I try to stay positive and look for the good things in my life. I also try to limit my time around negativity and focus on the things that make me smile. I paint and cross stitch and find these things relax me and help me tap into my creative side. I look at my infusion dates as my “spa days” where I get to sit and put my feet up. I was supposed to go to Scotland with my Dad in 2020 and now we’re hoping for 2023!

I’ve been involved with the local support group since my diagnosis, was in the PAC, and am currently on the board of Myeloma Canada as well as the Canadian Myeloma Research Group. My mantra is in the absence of a cure, stable disease control with minimal side effects. 

Year of diagnosis – 2009

Age of Diagnosis – 48

Current pastime – substitute teacher

Secret – Staying positive and looking forward; Believe the medication is working; The mind and the body are connected; nourish both of them.

 

MY STORY

I was diagnosed on December 24, 2009.  I was 48 years old.  Therefore, I have lived with MM for 12 years. I had a sore back was going to the physio twice a week but the back wasn’t getting better.  The physio recommended I get an x-ray of my back and they found lesions.  I was a full-time teacher and took a year off to get a stem cell transplant. I returned to teaching and retired 3 years ago. I have had several lines of treatment.  I had 2 knee replacements as the medications broke down the cartilage in my knees.  I was substitute teaching before COVID and hope to go back to it.

 

My tips on living with myeloma are enjoy the good days and appreciate your family and friends.  Learn to accept help and when you can help others.  Yes, we have lost things that we will never get back such as our energy but I found looking back doesn’t help the situation

Year of diagnosis – 2012

Age of diagnosis – 49 

Current pastime – Business Consultant; Leader of the Vancouver Myeloma Support Group. 

Secret – Staying positive; Staying busy; Giving back; Always having a good puzzle on the go; Dog walks; Bike rides; Cherishing time with family and friends.

MY STORY

Before being diagnosed September 2012, I had a very full and busy life raising two beautiful girls, Niki age 10 and Margeaux age 12 with my amazing husband Boyd plus working full time.  Although I had been struggling for a couple of years with bone aches and pains I was managing.  My GP, who refused to do a bone density test stating I was too young, wasn’t overly concerned so I persevered just like all working moms do!  It wasn’t until February 2012 when I heard a “pop” and felt intense pain in my right shoulder, after lifting a heavy box, that I started pushing for answers.  I spent the next months consulting doctors, specialists, getting ultra sounds and resorting to acupuncture, dry needling, and physiotherapy to relieve the pain. They all believed it was either a rotator cuff tear or a frozen shoulder.  However, I believed it was more and by August 2012 my body started screaming and I found myself sleeping on thin ice packs to relieve the pain. It was after getting shingles in my right eye and almost passing out from intense pain in my shoulder blade area after sneezing that CT-Scans, MRI and X-Rays were ordered.


Turns out the pressure from the sneeze expanded my shoulder blade to expose a tumor the size of a lime. On the Monday my GP told me (holding a box of Kleenex for herself) I had soft tissue sarcoma, Wednesday she called to said it was second stage cancer but didn’t know what the primary cancer was and by Friday she called saying and I quote “Good news you have myeloma” to which I replied “I have skin cancer?”   Although funny but not funny I do think the way I was told has helped me keep my glass half full because things could always be worse.  What is frustrating is knowing that a simple blood test would have detected my myeloma much sooner.  That’s why these awareness campaigns are so important.


I underwent radiation to deal with 4 tumors prior to my stem cell transplant, which took place in February 2013. Unfortunately, the transplant was unsuccessful.  Against my doctors’ advice, I refused any further treatment for a 1.5 years due to a personal family matter.  However, luck was on my side because in October 2014, I qualified to participate in the Phase III Daratumumab clinical trial which I believe saved my life.  My body responded extremely well to the Daratumumab, Revlimid and Dexamethasone treatment, and I continue to this day to receive this treatment with successful results.   


This bravado would not be possible without my rock and best friend beside me, my husband of 24 years who has been there through it all.  I’m also blessed to have two amazing daughters who champion me through my tough days.  They are my biggest fans.  I’m also surrounded by 4 supporting sisters and mother and many loving friends.  No “Debbie Downers” in this group.  For now, you’ll find me biking along Spanish Banks, walking Bowie our labradoodle in Kitsilano or golfing. As my tattoo says “It’s all good.”

Year of diagnosis – 2012

Age of diagnosis – 58 

Current pastime – Retired but busier than ever and enjoying life 

Secret – Keeping well informed through a number of organizations including Myeloma Canada; Be your own advocate; Enjoy your family and friends; Drink water & exercise every day; I believe in the power of food and exercise.

 

MY STORY

Shortly after I retired in 2011 after a long rewarding career as Human Resources Manager for TD Bank I met with my family doctor and told him that despite his assurances and all test results, my instincts told me that something was not quite right.

 

My pre-diagnosis symptoms were fatigue and multiple infections such as colds and flus (even got a mild case of H1N1), and eye infections with pus literally pouring out of my eyes. Although he didn’t think there were any issues he agreed to refer me to a hematologist, though I did not see him until a few months later.  The general hematologist/oncologist also thought nothing was wrong based on my past blood tests. But after years of being so active biking and hiking and having a strong woman’s intuition I knew I should listen to my body.  As a precaution, the hematologist ordered more detailed testing, which revealed the telltale M -protein spike. In June 2012, I was diagnosed with indolent smoldering myeloma.

 

For four years we monitored my myeloma as my m-spike continued to climb. Eventually, after chemotherapy therapy, I had a stem cell transplant in October 2016.  With more than four years between my diagnosis and my transplant, I had time to prepare. I decided to approach my stem cell transplant like a work project.  I wanted and knew I needed to be prepared both physically and mentally in order to get through it, and to give myself the best chance for a full recovery. I knew that it would be important to continue to eat three times a day even if I didn’t feel like it, and to drink lots of fluids. I would have to walk every day. I would have motivating notes all over my home to remind me of those things.  Because I had difficulty concentrating those first few weeks, I discovered Netflix; it got me through those first few weeks of my recovery.

 

The transplant went well. I recovered quickly, with a better than 93% response. Six months later, it was time to decide on some type of maintenance treatment.  For me, I need to be a student of my disease so that I am able to make informed decisions in collaboration with my wonderful medical team. I did my own research to educate myself on my options, based on my own medical history of previous cancers and my desire to continue my active life.

I expressed my concerns to my specialist. She advised that a good choice for me would be Ninlaro (Ixazomid).  I think it’s important to mention that it isn’t always easy.  When I was diagnosed, I’d heard of myeloma, but only as some type of blood cancer. I didn’t have a clear idea about the disease. 

I am incredibly grateful that for me, living well and living well with Myeloma are virtually one-and-the-same.  I take very few supplements because of my current regimen of Daratumumab, Dexamethasone and Revlimid which I have been on since September 2019.To me, living well means having meaningful relationships with friends and family. It means being physically and psychologically fit, so as to keep on doing what I love to do.  That includes working out with a personal trainer twice a week. Keeping fit has been a big part of my being able to live well with myeloma, and feel that I have some control over this disease.

 

My father was my role model for living a happy life. He had Chronic Lymphocytic Leukemia (CLL) and lived a full life for almost 14 years after his diagnosis. He was a true inspiration to me and our family. And he remains a real hero of mine as I live with my own disease.  There are so many people I am thankful for, but it is my husband Bill, who has been by my side, 24/7, every step of the way. I could not have done it without him.  Just as it hasn’t always been easy for me, it also has not always been easy for him. But we share the same optimism going forward on our journey.  I hiked up mountains for so many years before my myeloma diagnosis, and I still hike up mountains now.

Living with Solitary Plasmacytoma of the Bone

 

Year of diagnosis – 2016

Age diagnosed – 58 

Current Pastime – Living the dream life in an oceanside paradise with the luxury of good health and time to enjoy family, friends, nature, and activities. 

Secret – Lots of gratitude. Wonderful loving & supportive husband, sons, family & golden retriever who make me smile everyday. Positivity and knowledge.

 

MY STORY

Pre-diagnosis, I was enjoying activities, running a business, and travelling, but I also struggled with recurring lower back and leg pain for a couple of years. Initially, the pain was attributed to a previous cycling accident, and multiple x-rays did not reveal any issues. However, as the pain increased, I pushed my GP for an MRI and was put on a waitlist. Several months later, I still had not received an MRI. Eventually, I was unable to bear weight on my right leg and needed crutches to get around, at which point I arranged for a private MRI that identified a large 11cm lesion on the right iliac bone of the pelvis. Unfortunately, the 1st MRI did not provide enough detail for a referral, and another MRI was requisitioned. After 10 stressful days waiting for an MRI, I finally paid for a 2nd private MRI.

 

I was referred to the local cancer clinic, and assessed by an orthopedic oncologist, who told us the terrifying news that I probably had osteosarcoma, which would require amputation from the hip down. The next 3 months was the most difficult period of my journey, filled with a barrage of tests, exams, images, biopsies, uncertainty, and fear, while waiting for a diagnosis.

 

Finally, we met with the orthopedic oncologist who delivered the diagnosis by saying “good news (long pause), you have lymphoma”. I was expecting the good news, and was stunned by his words, particularly since my father had died of lymphoma at the age of 48. At the time it was of course shocking and frightening. Over time, I was able to appreciate that a diagnosis of lymphoma was better than a diagnosis of osteosarcoma, but it was extremely difficult to experience such insensitivity at that very stressful time.

 

Fortunately, I was then referred to a wonderfully warm BC Cancer hematologist, who determined the correct diagnosis was actually solitary plasmacytoma of the bone, which is often a pre-cursor to myeloma. I was treated with 25 sessions of radiation over a five-week period. In the months following treatment, my pain and inability to walk increased, but blood tests slowly began to show that cancer markers (M-protein & IgG Lamda light chains) were decreasing.

 

Thankfully, seven months post-treatment I achieved a complete response. And a few months later, I was accepted at G.F. Strong Rehabilitation Hospital as an out-patient for six months of rehab treatment. Thanks to an amazing team of physiotherapists and a lot of hard work, I recovered full mobility a year later.

 

I have just celebrated my 5 year anniversary in full remission, and I am thankful every day to be healthy and strong without any physical disability. I continue to be monitored regularly with semi-annual blood tests, annual CT scans, and bone strengthening medication.

Solitary plasmacytoma is a rare disease and there is very little information or support for solitary plasmacytoma patients. At the time of diagnosis, I felt very alone and frustrated by the lack of information and support for solitary plasmacytoma patients. Eventually my quest for knowledge led me to a Myeloma Canada national conference, which opened a door to the information and support I needed to understand my disease and my future. It was also an eye opener for me, as everyone I encountered at the event appeared healthy and living well with myeloma. I seemed to be the only one who had a visible disability. The event filled me with hope, knowledge and optimism.

 

In 2019, I was asked by Myeloma Canada to establish a myeloma support group in Vancouver.  I am so fortunate to have met so many wonderful people through my association with Myeloma Canada and the Vancouver Myeloma Support group, who have taught me so much, and given me strength, hope, help, and friendship.

 

I believe that increasing awareness, advocacy, early detection, education, research and compassion will continue to improve the lives of all patients diagnosed with myeloma and solitary plasmacytoma.

 Watch additional ‘hero’ stories of myeloma survivors via the Myeloma Canada website.

CAREGIVER SUPPORT

Being an unpaid primary caregiver to a myeloma patient is a vital role especially during the 3 to 4 weeks post stem cell transplant when the patient has little or no immune system and must follow a strict medication regime.

To be an effective caregiver, it is essential to look after your own emotional and physical well-being.  

This will involve:

    • Recognizing your own needs
    • Recognizing the value of the care you give and acknowledging that you are an essential member of the team of health care providers
    • Accepting that your role may be emotionally challenging
    • Reaching out to family, friends and other caregivers for assistance

Many of us who embark on the caregiving role do not have any previous training.  We often have very high expectations of ourselves in these new responsibilities.  Increased levels of stress and self-doubt are common and can be debilitating.  Reviewing the following checklist will help you to avoid becoming overwhelmed by your caregiving role and focus on what might help:

    • Are family members and friends supportive?
    • Is there a good balance of caregiving and other responsibilities?
    • Do you feel confident in your role?
    • Do you feel comfortable asking others for help?
    • Do you have the information and skills you need?
    • How are you managing the stress of being a caregiver?
    • Do you feel healthy?
    • Are you exercising? Sleeping well?  Eating well?
    • Are you taking time for yourself?

The following is a general guide that will help you to focus on the steps involved in caregiving for someone who has been diagnosed with multiple myeloma:

  • Get Organized – information is power and can help you cope with your new circumstances.  It may be helpful to start creating a reference manual for you and others involved in the patient’s care.  Things to include might be members of the healthcare team, dates and times of appointments, a list of medications, etc.
  • Make sure to take care of yourself – recognition of the fact that becoming a caregiver for someone with an incurable but treatable disease is going to bring new challenges into your life.  It is important to manage your stress, maintain balance in your life, and accept support from others.  Having a friend to talk to is essential to keep this balance.
  • Decide what skills you have and what skills you need – as a primary caregiver, you will likely need to help manage and attend appointments and make sure that the information you are being given is clearly understood.  You will most likely need to become a researcher and an advocate.  You will need to be empathetic and supportive.  These are just a few of the new roles you will have to manage.
  • Limit your care to those things that the myeloma patient is unable to do themselves – it is important that the patient maintains a sense of control in their lives and that you, as a caregiver, do not stretch yourself too thin by taking on too much.  This may require you to say NO at times which may be difficult.
  • Ask for help from other family and friends – assess what you can and will be able to do and delegate, if needed, to other people close to the patient.  Make sure the patient agrees on who and what is delegated.
  • Recognize that as a caregiver, you are not the primary decision maker – the myeloma patient is the one who is ultimately responsible for the decisions relating to treatment.  However, you may be able to offer choices and research options.
  • Remember that legal and financial concerns may need to be addressed – it is better to address these things early in the treatment schedule.

To avoid burn-out, here are some suggestions that may help:

    • Remember that this new diagnosis and your new caregiving role do not have to consume your whole life.
    • Be careful not to put your life on hold. Keep to your regular schedule as much as possible and make sure that your emotional needs are met.
    • Take time for self-care. You need to be pampered too.
    • Recognize when you are stressed and the triggers of that stress.
    • Reach out to the patient’s family and friends for additional support and delegate if needed.
    • Monitor your consumption of alcohol and recreational drugs as a “de-stressing” mechanism.
    • If you think you are depressed, make sure you seek professional help.

SUPPORTIVE TREATMENTS

Complimentary therapies can improve your psychological and emotional wellbeing by alleviating symptoms and side effects, such as nausea and pain, in addition to giving you a feeling of greater control over myeloma and its treatment.

Complementary therapies aimed at reducing tension and promoting relaxation may be especially useful for caregivers.

 

Before starting any alternative supportive treatments, please speak with your BMT Healthcare team or doctor to ensure it is safe and does not negatively affect your current treatment. 

Acupuncture, which is part of traditional Chinese medicine, focuses on balancing the body’s own life force to restore wellbeing.

 

Practitioners of Chinese medicine believe that the body’s life force (Chi) becomes unbalanced when someone is ill.  Thin acupuncture needles are applied to areas of the body where the life force has been blocked, in order to restore health and balance.

 

Acupuncture can be used to alleviate pain and sickness, and to relax muscles. Several studies have shown that acupuncture is most helpful for easing acute vomiting after chemotherapy. Acupressure works best for acute nausea.

Aromatherapy is the use of essential oils (concentrated oils from plants) and massage to reduce stress and symptoms of anxiety. A variety of oils with specific scents and properties are used to produce different results.

 

It may be best for you to avoid using oils on your skin while you are undergoing chemotherapy or radiotherapy, both of which can make your skin very sensitive.

 

That said, lightly scented candles can be used to help relieve nausea and promote relaxation. 

Cannabinoids are the active chemical ingredients produced by the cannabis plant.  More than 100 different cannabinoids have been identified, but research has primarily focused on only two: delta-9-tetrahydrocannabinol (THC) and cannabidiol (CBD). 

 

Research has found the following benefits of THC and CBD:

 

THC

  • Pain relief
  • Anti nausea and vomiting
  • Sleep aid
  • Anti spasticity
  • Appetite stimulator

CBD

  • Anti-inflammatory
  • Anti-anxiety
  • Neuroprotectant – nervous system regeneration
  • Anti-seizure
  • Antipsychotic

Different forms of cannabis:

  • Prescription cannabinoids – THC and CBC as capsules, sprays, or solutions available by prescription (i.e., Nabilone or Sativex)
  • Cannabis oil – cannabis extracts made into oils placed under the tongue, swallowed or rubbed onto the skin.
  • Cannabis edibles – sometimes in candy or cookie form.
  • Vaporized cannabis – dried cannabis which is heated and inhaled as vapour.
  • Smoked cannabis – dried cannabis which is burned and inhaled as smoke.

How to Use Cannabis Safely:

  • You should inform your healthcare team if using or plan to use cannabis.
  • In most cases, best taken by mouth.  It takes longer for cannabis to take effect (2-3 hours) and wear off (maybe up to 25-340 hours).
  • Start with small amounts and allow time for the full effects to be felt. 
  • Only use cannabis products from a Health Canada Licensed Producer.  They follow strict quality and safety standards and do not sell products containing bacteria or fungus.
  • Choose a low-strength product – containing a lower amount of THC and an equal or higher amount of CBD.

Myths and Facts:

  • Cannabis can help with nausea and vomiting caused by chemotherapy – FACT
  • Cannabis can slow cancer growth.  Cannabis can boost the immune system – MYTH
  • Cannabis can help relieve symptoms (pain, anxiety at the end of life – FACT
  • Cannabis has a low risk of addiction – MYTH (1 in 10 adults become addicted to cannabis)

Local Greenleaf Medical Clinic:

Greenleaf Medical Clinic, located in Langley BC, is a pioneer in the medical cannabis industry offering tailored recommend dosage, schedules, prescriptions, and education on the various methods for administering cannabis.  They also host numerous free webinars which are worth attending.  The staff is very knowledgeable and will help you through the entire process of acquiring a license to obtain medical marijuana.

 

Dr. Caroline MacCallum is the head of medicine with an impressive background:

  • FRCPC (Internal medicine), BSc Pharm
  • Clinical Instructor, Faculty of Medicine, UBC
  • Internist, VGH Dept Hematology/BMT & UBC Hospital
  • Medical Director, Greenleaf Medical Clinic
  • Special Interest in Complex Pain and Cannabinoid Medicine

Currently, Dr. MacCallum is a clinical instructor in the Department of Medicine at UBC and provides inpatient care at the Internal Medicine Ward at UBC Hospital and BMT department at VGH.

 

You must be referred by your physician or have Greenleaf medical physicians complete an assessment ($50) before treatment can begin.  Greenleaf membership is $75+ depending on your income; however, your health care plan covers all physician interactions/counselling sessions.  

 

NOTE: They are not a dispensary.  For more information contact Greenleaf Medical Clinic directly (1-877-513-4769)

 

Other medical marijuana/cannabis information:

BC Cancer Cannabis Trial

Massage, which can be both therapeutic and relaxing, is used to relieve muscle pain and tension.

 

Be sure to tell the massage therapist that you are a myeloma patient and that forceful massage could damage your bones.

Meditation is a gentle mental exercise that can help reduce anxiety, stress, depression, pain and help relax busy minds. Practicing meditation helps you enhance our sense of peace, optimism and confidence. When state of mind is less prominent, you might notice that joy, gratitude and hope are easier to access. Meditation helps us to re-learn a skill often lost since childhood – the ability to relax at will and return to our natural state of inner balance.

Inspire Health offers wonderful free classes for people with cancer for all levels with the focus on calming the mind, developing mindfulness and acceptance, and connecting with intuitive wisdom. Classes incorporate instruction, readings, stories and individual sharing and may include setting an intention, a relaxation/body scan, following the breath, watching thoughts and/or a ‘loving kindness’ practice. 

 

Visit Inspire Health for class schedule, which you can also find on our website Resources.

Naturopathic medicine is a system of healing that focuses on supporting and stimulating the body’s ability to heal itself. Naturopathic medicine takes a holistic approach, which means that it focuses on the whole person rather than on a person’s illness.

 

Naturopathic doctors (NDs) practise this form of medicine, which combines modern scientific knowledge with traditional and natural therapies. They are trained in and use a wide variety of different therapies.

Naturopathic medicine treatments may include special diets and nutritional counselling, fasting, enemas, herbal, vitamin or mineral remedies.

 

There is no evidence at this time that naturopathic medicine can treat the cancer itself. Naturopathic medicine often combines several different therapies, and there isn’t enough research yet on the different therapies to say whether naturopathic medicine as a whole system works well as a complementary therapy.

 

Only a few good research studies have looked at individual naturopathic methods. Some evidence shows that a few methods used by naturopathic doctors may be safe and effective as a complementary therapy to help cope with side effects of cancer treatment.

 

Naturopathic practitioners use many different treatment approaches.

 

Examples include:

  • Dietary and lifestyle changes.
  • Stress reduction.
  • Herbs and other dietary supplements.
  • Homeopathy.
  • Manipulative therapies.
  • Exercise therapy.
  • Practitioner-guided detoxification.
  • Psychotherapy and counseling.

Physiotherapists can assist individuals with multiple myeloma to manage both the disease and treatment-related symptoms, improve overall quality of life, and prevent further complications associated with decreased activity and exercise.

GF Strong Rehabilitation Centre provides an outpatient physiotherapy clinic and a broad range of other services. 

You can find more options on our website in “Vancouver Area Physiotherapy & Rehabilitation Services.”

Reflexology is a specialized form of therapeutic foot massage that is based on the theory that different areas of the foot are connected to the body’s internal organs.

 

Pressure is applied to different points on the sole of the foot to help relieve pain and sickness.

 

This type of massage can be very relaxing.

Reiki is an ancient form of healing that uses the body’s own energy or life force to restore a sense of balance or calmness, release tension and reduce pain.

 

The reiki healer channels energy through his or her hands to various parts of your body. Although he or she does not actually touch you, you may feel sensations of heat, cold, vibration and tingling on the skin.

 

You can remain fully clothed while receiving reiki healing.  

Visualization involves the use of mental imagery while you are in a state of meditation or relaxation. It can be used as a relaxation tool, or to reduce stress and anxiety.

 

Picturing yourself in a peaceful scene can promote relaxation.

 

Some patients imagine their immune system destroying myeloma cells or visualize their blood counts coming up.   

The purpose of yoga is to build strength, awareness and harmony in both the mind and body. Inspire Health offers free yoga classes for people with cancer.

  • Chair Yoga
  • Gentle Yoga
  • Restorative Yoga
  • Qi Gong

Visit Inspire Health for class schedules, which you can also find on our  website in “Vancouver Area Physiotherapy & Rehabilitation Services.”

FINANCIAL SUPPORT

Financial Support Services

to qualify for Canada Pension Plan Disability you and your doctor will need to complete an application form. 
Qualifications:

    • severe long-term mental or physical disability that stops you from doing any type of paid work
    • under 65 years of age
    • must have paid into Canada Pension Pla

Sickness benefits are for people who paid into Employment Insurance and are sick, injured, or quarantined and unable to work.  You can get up to 15 weeks of paid benefits.  You must have at least 600 hours of insurable work, and need to submit a “Record of Employment” and a doctor’s letter about your health.

Caregiving benefits are for people taking care of a sick family member or friend.  There are three types of benefits for caregivers:

    • Family caregiver benefits for adults: Up to 15 weeks of pay when caring for someone are 18 or over
    • Family caregiver benefits for children: Up to 35 weeks of pay when caring for a child under age 18
    • Compassionate care benefits: Up to 26 weeks of pay when caring for someone needing end-of-life care

The BC Hospitality Foundation is for people who work or have worked in the hospitality industry in BC (hotels, restaurants, tourism) 604-986-3256

The BC Rehab Foundation is for people who work, or have worked, in the hospitality industry in BC (hotels, restaurants, tourism) 604-986-3256

Shine Through the Rain Foundation help people who have an illness and are having financial problems that affect their daily living (rent, utilities etc.).  Applications are due on the 15th of every month. 1-866-753-0303

The Royal Canadian Naval Benefolent Fund is an emergency fund for members, former members or dependents of the Canadian Forces or Navy. 1-888-557-8777

The Support Our Troops organization was established in 2007 to  meet the unique needs and special challenges faced by members of the Canadian Armed Forces community as a result of military service. This includes providing financial assistance to promote family resiliency and supporting Veterans and serving members who may have an illness or injury through a variety of grants and programs.  Support Our troops is the official charitable cause of the Canadian armed forces.  For more information call 1-877-445-6444

First Nations Health Authority (FNHA) is the first and only provincial First Nations health authority in Canada.  It assists Indigenous people of BC with medical and dental coverage. 694-693-6500 or 1-855-550-5454

Palliative Care Benefits for BC residents who have a life-threatening illness and life expectancy of up to 6 months and who wish to receive palliative care at home.  A doctor referral is needed. Services include coverage for certain drugs, medical supplies and equipment.  604-683-7151 or 1-800-663-7100

The Better at Home Program is a government-sponsored partnership with community groups that offer programs to help seniors with simple-to-do-day tasks such as rides to medical appointments.  The BC Government funds the program while the United Way manages it.  The Kitsilano Neighborhood House is part of the program.  Visit the Better at Home organization directory to see if a program is offered in your area.

BC cancer patients can have a no-charge dental consult (including x-rays) to evaluate a dental problem related to
their cancer.  
Cancer treatments that cause damage to your teeth or mouth health may be covered.  Talk to your oncologist or visit the BC Cancer Agency Dental Clinic brochure to see what and where services are offered.  

The Red Cross allows you to borrow medical equipment for your home for up to 3 months with a referral from a healthcare professional such as a doctor, occupational therapist or physiotherapist.  Talk to your nurse or doctor for options. 1-800-418-1111

The Canadian Cancer Society may have wigs to borrow or free head covering.  Look Good Feel Better workshops are also offered to help you look and feel better during cancer treatment. For more information contact the Canadian Cancer Society 1-888-939-3333

Fair Pharmacare

The Fair Pharmacare plan provides additional coverage for specific prescriptions, medical supplies ad pharmacy services.  The plan is based on your income meaning the lower your income, the more help you get.  You must pay the full cost until your deductible is paid.  PharmaCare will pay 70% of costs for Regular Assistance and 75% for Enhanced Assistance until the family maximum is reached.  Deductibles are based on the family’s net income from 2 years ago.

 

 

It is recommended to register with PhamaCare ASAP to ensure you have coverage for G-CSF injections used to prepare your body for stem cell collection transplant. G-CSF is a costly prescription medication and is NOT paid for by the Vancouver General Hospital or BC Cancer for autologous transplant patients.  The cost of G-CSF depends on the dose required – one course of treatment is between $2,000 and $3,000. You will need 4-5 days of daily G-CSF injections.

 

 

Requirements:

    • You must have Medical Services Plan (MSP) coverage
    • You must permit the Canada Revenue Agency to check your income from two years prior.

There are no premiums to pay. Register online. Any questions, call 604-683-7151 or 1-800-663-7100. 

Reimbursement of Prescription Drugs

There are basically four ways of paying for cancer drugs:

  • You are a member of a government health insurance drug plan that the medication is approved and listed on (either as a general benefit or through a special authorization process).
  • You have a private drug plan that will pay for the drug (many private plans have formularies or lists of drugs covered).
  • You pay for the drug yourself.
  • If you meet specific financial eligibility criteria, assistance may be provided by the drug manufacturer.

It may take some research to minimize your out-of-pocket costs, but here are a few tips that may help:

  • Know your health insurance coverage. Check your provincial health insurance coverage for prescription medications.
  • Check drug coverage with your local cancer care centre
  • Talk to your cancer team social worker or pharmacist or call your provincial ministry of health to learn about all your options for prescription medication coverage.
  • If you have private health insurance or a drug plan at work, sit down and carefully review your benefits.
  • Ask your doctor what drugs you may need in the future and check to see if your plan covers them.
  • Try to coordinate the benefits, so any portion of a drug cost not paid by one plan is applied to the next.
  • Some private insurance plans require paying up-front and then applying for reimbursement. If this is a problem for you, ask your insurance company to allow your pharmacy to send the bill directly to them.
  • Don’t be afraid to advocate for yourself. For instance, if your employee health plan does not cover a particular drug, ask your employer or human resources manager if the company can make an exception in your case. Or ask your employer if they would waive the cap on your drug coverage.
  • Find someone to work with you to advocate for the drug coverage you need. This person (family member, friend etc.) can help continue to advocate for you even when you cannot.
  • If you are refused coverage of a medication you need, appeal the decision. Sometimes the refusal may be the result of nothing more than faulty paperwork. Insurance companies will sometimes change their mind if you appeal.
  • Some pharmaceutical companies have free services that will help you search for coverage of specific drugs or even supply you with the medication you require. Talk to your cancer care team or search online to see if you may be eligible for such a program.

Raising Awareness to Find a Cure

Through the hard work of local myeloma survivors, the province of British Columbia has officially declared March 1st as “Multiple Myeloma Awareness Day”. In fact, many other jurisdictions in Canada, the United States and around the world have proclaimed the month of March as “Myeloma Month”.  

Through raising awareness of multiple myeloma, we can educate the public, the medical community, and government authorities on the early warning signs of the disease, equitable access to healthcare services, innovative therapies, and clinical research.


HOW CAN YOU HELP

Clinical Trials – you may be able to make an invaluable contribution to myeloma research and the development of new therapies by donating your marrow for laboratory research or volunteer for a clinical trial. Learn more about clinical trials.

Awareness – contact anyone you think might be able to help spread the word about myeloma including newspapers, news outlets, personal Facebook, Instagram, Twitter or other social media, plus medical offices, pharmacies, hospitals, cancer centers, etc. 

Local Fundraising events

RELATIONSHIPS

Changes brought on by the diagnosis of myeloma, the disease itself, and treatments can sometimes affect sexual relationships. Women may experience loss of arousal, painful intercourse, loss of desire, and difficulties having an orgasm.  Sexual dysfunction may be caused by medications, hormonal therapy, ovarian failure, pain, body image changes, and changes in interpersonal relationships.

For many reasons, you and your partner may have less interest in having sex.

These reasons include, among others:

    • Feeling too tired or physically unable to enjoy a full sexual relationship.
    • Feeling that sex is not important if you are coping with a serious illness.
    • Experiencing a reduction in sexual desire (libido) because of:
      • Stress and anxiety.
      • Certain drugs.
    • For women, chemotherapy can trigger early menopause which can affect fertility, sexual desires, and physical changes
 

If your sexual relationship is important to you, talk to your partner about how you feel. You may find it difficult to bring up the subject, but it’s an important conversation to have.

It’s easy for someone to feel rejected when a sexual relationship changes or ceases.

Be open and honest with your partner and try to maintain a level of closeness, even if you do not have sex.

Discuss with your partner what level of intimacy feels comfortable, and, in time, you may gradually return to a more physical relationship.

Don’t be too embarrassed to talk to your doctor or nurse about issues you may be having with your sexual relationships. You may not be used to these types of conversations, but they are. They may be able to prescribe a treatment that can help, if appropriate.  

Potential changes to your body and sexual desires due to chemotherapy may require some creativity when it comes to sexual relationships.  Remember that ‘touch’ is very healing. A January 12, 2022 article in the New York Times by Maggie Jones talks about how to embrace our ever-changing body.  

To view the article simply click  Sexual Relationships (Document #5).

WARNING: This article is for those with an open mind.

PALLIATIVE & HOSPICE CARE

Palliative care provides extra support for patients, their caregivers, and family, by focusing on the quality of life. It includes pain and symptoms management, skilled psychosocial, emotional and spiritual support, and comfortable living conditions with the appropriate level of care either at home, in hospice residences, in long-term care, in hospital, or in any other setting of your choice.

It is important to remember (and let your loved ones know) that choosing to stay at a hospice does not mean that you do not want to spend time at home or that your family is failing to take care of you.

Conversations with your family and your healthcare team can help you determine which type of care you would like and when. You may feel most comfortable at home and want to be there as long as possible; or you may want to take advantage of the extra medical support and care available for you and your loved ones at a hospice.

Note that both palliative care and hospice care provide comfort. While palliative care can begin at diagnosis, and at the same time as treatment, hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.  Palliative care is whole-person care that relieves symptoms of a disease or disorder, whether or not it can be cured. Hospice is a specific type of palliative care for people who likely have 6 months or less to live.

If you have made the difficult decision to stop active treatment and concentrate on relieving symptoms and improving your quality of life, you may be referred to one or more specialists for palliative care. If you are considering medical assistance in dying, a member of your healthcare team can provide more information for you and your loved ones.


There are a number of informative websites available:

FINAL PREPARATIONS

Ongoing research has extended life expectancy for myeloma patients, and there is a strong belief that a cure is near. However, it would be a disservice not to include a section on final preparations and some information about difficult decisions that should be considered. 

 

This will be a time when you and your loved ones will feel profound grief, and not just extreme sadness, but also anger, guilt, confusion, and denial. It is important not to ignore these feelings and not to isolate yourself. Talking to your family, a close friend, or a mental health professional will help you process the complicated and painful emotions that you have. This will take time, but by sharing your grief you can help each other heal and ease your burdens.

Many parents, of all ages, avoid talking about their illness or about dying, simply out of love and a need to protect their loved ones from harm. However, children young and old, do better and are more resilient when their parents explain to them the nature of the disease, and assure them that they will not be abandoned. 

 

If your cancer is no longer responding to treatment, telling your children about it will help them adjust and prepare for the future. Regular family discussions about what is happening in each of your lives can be a natural opportunity to keep your children informed. 

 

Social workers at your children’s school can also help and support your children during this difficult time. Use gentle, direct, age- and stage-appropriate language to explain the changes. With young children, you can use phrases such as “mommy is getting sicker”, or as things change “mommy is getting very sick” and later “mommy is very, very sick and will not get better”. 

 

These phrases convey a message of increased illness and help move the children along in their understanding of the illness.

During this time, there are many things you and your loved ones can do together to recall, reflect on, and create new memories. The suggestions below can be an investment in your loved ones’ futures and can make an enormous difference to their well-being and adjustment after you are gone.

  • Make a photo album to capture favourite moments; or talk about these memories and write about them together in a memory book.
  • Fill a memory box together with favourite things that will remind your children and loved ones of your best times together. Jot down thoughts and stories on small cards.
  • Write on greeting cards for future occasions and milestones where your children and loved ones will think of you and miss you—birthdays, holidays, graduations, weddings, and the births of their own children. You can also leave them gifts or mementos for important events.
  • Write letters or record videos telling your children and loved ones your hopes for their futures, and advice they will need at different stages of their lives. Although you may not be there in body, you will be there in spirit and in their thoughts.

An Advance Care Planning (ACP) is a guide for your substitute decision-maker or the person to whom you have given power of attorney if you are unable to make your own decisions.  An ACP is usually created through conversation with your healthcare team and your loved ones, and by reflecting on your own values and beliefs. 

 

Take this opportunity to discuss your preferences and fears. For example, many people with cancer have fears about living their last days in pain or feeling short of breath. An honest discussion will help alleviate these fears. You can learn more by going to www.advancecareplanning.ca. It is advisable at this time to make decisions regarding power of attorney, a will, and organ, tissue, or body donation. You may also choose to pre-plan or speak to your family about your wishes for a funeral or memorial service.

 

  • Part of advance care planning is choosing someone to be a substitute decision-maker for you, if necessary.
  • A Medical Power of Attorney
    • the use of breathing machines or ventilators
    • the use of CPR (cardiopulmonary resuscitation) if breathing or heartbeat stops
    • artificial feeding such as tube feeding
    • continuing or not continuing with medical treatments
  • An Enduring Power of Attorney is used for legal and financial affairs only not medical
  • Since 2016, it has been legal in Canada for an eligible person suffering intolerably from a grievous and irremediable medical condition to access Medical Assistance in Dying (MAiD). MAiD permits a doctor or nurse practitioner to assist an eligible patient in voluntarily ending their life.
  • Laws about advance directives differ from Province to Province. It’s best to talk to a lawyer or your healthcare team for more detailed information.

Visit Advance Care Planning BC for additional information.

 
  • “Living Wills” have been legally valid in BC since 2000. A “living will” is a written statement that expresses your wishes regarding medical treatment and personal care in case you are unable to express your wishes at the relevant time.
  • You can write your own “will” using templates available on the internet.
  • In BC, a “will” does not need to be written or processed by a lawyer or notary in order to be considered “legal”. However, two witnesses must witness you signing the “will” and you must also see both witnesses sign the “will”.
  • In BC a “will” can be registered, but this is not mandatory. To register a “will”, a “Wills Notice” form is filed with the BC Vital Statistics Agency.
  • Wills are often outdated so you may want to update an existing “will” or create a new one after your diagnosis. Once it’s done you will feel relieved to have taken care of it.
  • Make sure your family knows where they can find your will and life insurance documents.
  • Keep your originals in a fireproof box or a safety deposit box or with your lawyer.
  • Give copies of the documents to family members or healthcare professionals.

Since 2016, it has been legal in Canada for an eligible person suffering intolerably from a grievous and irremediable medical condition to access medical Assistance in Dying (MAiD).  MAiD permits a doctor or nurse practitioner to assist an eligible patient in voluntarily ending their life with dignity.  MAiD is about empowerment, dignity, relief, eliminating the unknown and fully reclaiming the time left with a semblance of control.  Although your loved ones may not agree, it is your tight and your decision.

 

https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html

For most people, talking about death is very hard. You might worry that it will hurt friends and family or make them upset. You may fear that talking about it will make it come faster – even though it won’t. You might find that the subject, once raised, is rejected with words like “everything will be fine” or “it will all work out.” How your family has handled death in the past and differences in traditions or customs can also affect how you speak about it.

 

Death is a reality, and talking about death with your family and healthcare team can help take away some of the fear or anxiety that you and your loved ones may have. It means that your family or close friends won’t have to make these decisions when they are grieving and have little time to think them through. Knowing that your wishes will be carried out can also bring you a sense of peace.

 

Deciding on your final arrangements can include decisions about:

  • Whether you wish to be buried or cremated
  • If you would like your ashes to be buried, scattered or kept by loved ones
  • Your wishes for a funeral, memorial/church service, celebration of life or something else, where it should be held and any special instructions for it such as decorations/flowers, music, food etc.
  • Obituary write up and photo
  • Budget and who pays?

Websites to visit for additional information:

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