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TORONTO & DISTRICT MULTIPLE MYELOMA SUPPORT GROUP NEWSLETTER
Website: www.myelomatoronto.ca
July 2020 Newsletter # 137
In This Issue
Next Meeting Details
Last Meeting
Announcements
COVID-19 and Myeloma
Upcoming Guest Speakers
Share and Care Meetings
Myeloma Canada News
New Facebook Page
Social Outings
Volunteering for the Support Group
Myeloma Canada InfoWebinars
Myeloma Canada Mailing List
Videos from Previous
Presentations
Suggestions or Requests
Major Events
MM5K Walks, Princess Margaret Cancer Centre
Myeloma Canada Multiple Myeloma Marches
Choosing Hope Book Launch and Podcast
Fundraising
Summary of Presentations at June 6, 2020 Meeting
Dr. Ernie Mak, “Digestive Issues for Myeloma Patients” and “COVID-19 and Healthcare”
Hello Fellow Members and Friends,
If you are now receiving paper newsletters, and you have an email address where we could instead email you the newsletter (in colour) please contact Dave McMullen – see contact below. Thank you!
Next Meeting: Saturday, August 8, 2020
Open to patients, family members, caregivers, and any other interested people.
Topic: Group discussion – sharing our myeloma experiences.
Meeting Time: 2:00 – 4:00 p.m.
Location: Virtual (ZOOM) Meeting (The login link to Zoom will be
distributed by email prior to the meeting.)
This will be a "share and care" group discussion, where patients and caregivers will have the opportunity to briefly share and exchange their myeloma related experiences if they wish to, and
ask questions. Alternately, participants may just listen to the experiences of others, if they prefer.
The meeting starts at 2:00 p.m., but you are welcome to login at 1:30 p.m. to receive instructions on using ZOOM and to meet other friendly faces. We suggest logging in early if you are not familiar
with Zoom. Much thanks to Munira and Nagib Premji, who are organizing the session. Zoom has become one of the most
commonly used platforms for virtual meetings during the pandemic, is easy to use, and is already familiar to many support group
members. Note: As a result of the rapidly changing environment, we
will update our website (http://www.myelomatoronto.ca) as information becomes available, to advise on the status of future in-
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person meetings, and to advise on virtual meetings and webinars in the works by Myeloma Canada.
Contacts:
Dave McMullen 905-648-5146, [email protected] Don Hunter 416-759-6348, [email protected]
Munira Premji 416-302-9459, [email protected] Jan Wleugel 416-760-7914, [email protected]
Bob McCaw 905-836-2664, [email protected] Patrick Taylor 416-537-8538, [email protected]
Last Meeting: June 6, 2020 Speaker: Dr. Ernie Mak, Supportive Care Physician, Princess Margaret Cancer Centre
Topic: 1) Digestive Issues for Myeloma Patients
2) COVID-19 and Healthcare
Excellent summaries of Dr. Mak’s presentations can be found later in the Newsletter.
Announcements 1) COVID-19 and Myeloma - Online Resources and Videos “Myeloma and its treatments affect how well the immune system responds to infection. This
means that people living with myeloma are at a higher risk for infection” (https://myeloma.ca/). Myeloma patients must be particularly careful as society begins to
open up again, while at the same time ensuring that they meet their physical, emotional and medical needs. Fortunately, most myeloma patients and caregivers have learned through experience how to handle viruses and infections and are unlikely to get COVID-19 if they
continue to take precautions!
Myeloma Canada has a very comprehensive and informative COVID-19 section on its website under the “News and Events” tab, with sub-sections on: COVID-19 and Canada, Preventative Measures, Keep our Community Safe, and COVID-19 News and Updates. It is linked here:
https://www.myeloma.ca/en/news-events/covid-19
The COVID-19 News and Events Section has new articles posted typically several times per
week: https://myelomacanada.ca/en/news-events/covid-19/covid-19
For the past four months, Myeloma Canada has also sent weekly or bi-weekly COVID-19 Information Bulletins by email. These are also placed on the website, under the News and Events tab.
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The International Myeloma Foundation (IMF) also has a comprehensive section on COVID-19, including frequent informative blogs by IMF Board Chair Dr. Brian Durie.
Coronavirus Patient Safety and IMF COVID-19 Updates:
https://www.myeloma.org/covid19-myeloma-patients If readers have time during this period of “social distancing” at home, they can also
view other interesting update presentations from the IMF Patient and Family Seminar, about myeloma research and treatment, linked here: https://www.myeloma.org/imf-
videos?field_imf_tv_blog_category_1=26&sort_bef_combine=created%20DESC
Multiple Myeloma Research Foundation (MMRF)
Coronavirus (COVID-19) and Multiple Myeloma:
https://themmrf.org/2020/03/multiple-myeloma-and-the-coronavirus/
The Public Health Agency of Canada
https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-
19.html
World Health Organization (WHO)
https://www.who.int/emergencies/diseases/novel-coronavirus-2019
2) Upcoming Guest Speakers October 3, 2020: Dr. Hira Mian, Hematologist, Juravinski Cancer Centre Review of Myeloma 101 and Myeloma Research Updates
December 5, 2020: Eric Georgieff, Pharmacist, McKesson Canada Drugs Commonly Used for Multiple Myeloma Patients, and Side Effects
February 6, 2021: Group Discussion
April 10, 2021: Dr. Sita Bhella, Staff Hematologist, Myeloma Program, Princess Margaret
Cancer Centre
News in Myeloma Treatment and Research
June 5, 2021: Ilene Shiller, Manager, Financial and Workplace Programs, Wellspring Financial Matters Impacting Myeloma Patients
October 2, 2021: Dr. Richard Tsang, Radiation Oncologist, Princess Margaret Cancer Centre Applications of Radiation Therapy for Myeloma Patients
3) Share and Care Meetings The Toronto and District Multiple Myeloma Support Group will begin hosting additional “share and care” meetings to supplement our regular bi-monthly meetings. Members of the support
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group have often expressed interest in having more opportunities to share our experiences and learn from each other beyond our formally scheduled informational talks and related
discussions. COVID-19 has kept us more physically and socially distanced than we are used to, and we have not even been able to have informal, in-person chats now that our regular
meetings have become Zoom sessions. We are pleased, therefore, to announce these new share and care meetings, which will be scheduled bi-monthly, in the months when there are no formal talks. For the time being, these meetings will be virtual, using Zoom. An email
notice will be sent out to all members of the support group with the Zoom link prior to the meeting.
Share and Care Meeting Schedule:
Thursday, September 10 7:00-8:30 PM
Location: Virtual (ZOOM) Meeting (The login link to Zoom will be distributed by email prior to the meeting.)
Thursday, November 12 7:00-8:30 PM
Location: Virtual (ZOOM) Meeting (The login link to Zoom will be distributed by email prior to the meeting.)
4) Myeloma Canada News
Approval of Sarclisa (isatuximab) by Health Canada Sanofi Canada has announced that Health Canada has approved Sarclisa (isatuximab) in
combination with pomalidomide and dexamethasone for the treatment of adults with relapsed and refractory multiple myeloma who have received at least two prior therapies including
lenalidomide and a proteasome inhibitor. Sarclisa is now under consideration by the pan-Canadian Oncology Drug Review (pCODR) so that recommendations regarding funding can be made to Canada's provinces and territories. In order to provide patient input in the review
process, Myeloma Canada has invited patients to complete a survey about their experience living with myeloma by July 31, 2020. The survey can be found at the following link:
https://www.surveymonkey.com/r/PK3Z6GB.
Myeloma Canada Facemasks Now Available Support Myeloma Canada by wearing a Myeloma Canada mask! Myeloma Canada has
commissioned three well-designed facemasks with the Myeloma Canada emblem. Available in black, grey and white, the non-medical masks are made of two layers and are machine
washable. The masks can be ordered online through the Myeloma Canada website: www.myeloma.ca.
Myeloma Canada Advocacy to Patented Medicine Pricing Review Board (PMPRB)
In late 2019, the PMPRB, a Canadian federal organization reporting to Health Canada, proposed guidelines which potentially risked patient access to some new drugs to be developed in future. Myeloma Canada, and many other organizations, successfully advocated
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to have these guidelines very significantly revised. Further advocacy work in this regard is currently underway by Myeloma Canada, including patient members of the Myeloma Canada
Advocacy Committee, as part of a PMPRB Consultation process. Further details of this process can be found on the PMPRB website, linked here: https://www.canada.ca/en/patented-
medicine-prices-review/services/consultations/draft-guidelines.html
5) New Facebook Page for Support Group
The Toronto and District Multiple Myeloma Support Group has a new Facebook page: https://www.facebook.com/Toronto-and-District-Multiple-Myeloma-Support-Group-
102359991539387/. Although the support group will continue to rely principally on its website, newsletters and emails when communicating with support group members and the
general public, the new Facebook page will provide some information about the support group for Facebook users or others who may not have found our regular website. The Facebook site will remain passive at this time, and will refer Facebook users to our website. Anyone
interested in active Facebook engagement with other patients and caregivers is encouraged to join the Myeloma Canada Patient & Caregiver Support Group on Facebook, linked here:
https://www.facebook.com/groups/myelomapatientandcaregiver.
6) Social Outings
Last year, members of the Toronto and District Multiple Myeloma Support Group organized three very enjoyable social outings: a Saturday luncheon at Joe Bird Restaurant on the
Toronto Harbourfront in June; a wonderful schooner trip around the Toronto Harbour on the Kajama in September; and another Saturday luncheon in October at the Duke of Cornwall, near the Princess Margaret Cancer Centre. We look forward to more social outings in the
future, once the current COVID-19 situation has resolved itself and social activities are back to normal. We welcome suggestions about future activities and destinations.
7) Volunteering for the Support Group The work of the Toronto and District Multiple Myeloma Support Group is sustained by the
many dedicated patients and caregivers who provide peer support, attend meetings, set up the meeting room and equipment (and now the virtual meetings on ZOOM), greet new
members, organize the kitchen and refreshments, and participate on the Executive. Your assistance in all of these areas is greatly appreciated by all support group members. At this time the Executive is particularly eager to strengthen the kitchen roster (pending return to
regular meetings) and to find someone to assume some secretarial duties associated with the work of the Executive. Please contact Dave McMullen if you are interested in volunteering in
any way.
8) Upcoming Myeloma Canada InfoWebinars August 19, 2020, 3:00 – 4:00 pm EDT Light Chain (AL) Amyloidosis: Diagnosis and Treatment - Register
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For information and registration for this webinar, or information about any other upcoming
webinars, follow the links above or go to: https://www.myelomacanada.ca/en/news-events/community-calendar/infosessions-webinars
Past Myeloma Canada InfoWebinars: Past InfoWebinars and other excellent video recordings by Myeloma Canada are available to watch on the Myeloma Canada Channel on YouTube. Some of these are listed here:
Drug Interactions in Myeloma and How to Avoid Them - view recording Relapsed/Refractory Myeloma & What to Expect - view recording Following & Understanding Your Serum Free Light Chain Test Results - view recording
Living Well With Myeloma for 25 Years: The Benefits of Getting Involved - view recording
Telemedicine: Practical Tips on How to Prepare for Appointments - view recording
Relaxation & Stretching Therapies - View recording Get to know your Myeloma Canada Patient Advisory Council (PAC) - View recording
Newly Diagnosed Myeloma & What to Expect - View recording
9) Get on the Myeloma Canada Newsletter Mailing List
We recommend that anyone affected by myeloma consider joining the Myeloma Canada Newsletter and email mailing list. This way, you can keep up to date on any bulletins, notices, newsletters, and other information emailed from Myeloma Canada. You can sign-up for the
newsletter through the Myeloma Canada website, on the “Find Support” tab, at: http://www.myeloma.ca.
10) Videos from Previous Presentations Videos from previous presentations at our support group meetings are available on the
Myeloma Canada website: http://www.myeloma.ca, under Resources/Educational Videos/Videos. Our videos have a red gerbera daisy flower on the title page. We will no
longer be providing DVD’s for distribution or loan because the presentations are readily available on the website and DVD’s are too costly for us to produce. If you are interested in
having one of our older DVD’s to keep, and would like to make a modest donation, please speak to Bob McCaw at the next support group meeting at the resource table or contact Bob by email at [email protected].
11) Suggestions or Requests
If anyone has any topics or items you would like included in future meetings or newsletters, or
other suggestions or requests, please contact anyone on the Executive.
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Major Events
MM5KWalks in Support of Bloom Chair, Princess Margaret Cancer Centre
For many years members of the Toronto and District Multiple Myeloma Support Group have
been joining other walkers and runners to raise funds for myeloma research through the Bloom Chair at Princess Margaret Cancer Centre. These walks are inspiring and empowering
events, full of life and hope, where family, friends, and co-workers, patients and caregivers, doctors and nurses, in teams large and small, show that they can make a real difference. Last year was a great success, with 595 participants raising over $528,000 in support of
myeloma research. Over the past 15 years, funds raised for the Bloom Chair have helped enable the Princess Margaret Cancer Centre to become one of the leading myeloma research
centres in the world. The walks planned this spring for Toronto, Mississauga and Vaughan have now been
rescheduled as virtual walks to take place on October 4, 2020. “Everyone everywhere is welcome! You can now safely run or walk your 5K, 3K or 1k distance anywhere… all while
continuing to raise critical funds for cancer research!” Register for the October 4th 2020 virtual walk in support of myeloma research using the links
below! Make sure to select Multiple Myeloma MM5K Walk when you register or donate.
Toronto: https://pmhf3.akaraisin.com/ui/RunorWalk2020/g/21608 Mississauga: https://pmhf3.akaraisin.com/ui/RunorWalk2020/pledge/registration/start
Vaughan: https://pmhf3.akaraisin.com/ui/RunorWalk2020/pledge/registration/start
More pictures from last year’s walk can be found on the Multiple Myeloma M-Moving Together Toward the Cure MM5KWalk Facebook site, linked here:
https://www.facebook.com/mm5Kwalk/photos
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Myeloma Canada Multiple Myeloma Marches
Each fall, communities across the country rally for a walk of up to 5km to increase myeloma awareness and raise funds for clinical research and for accelerated access to new, life-changing therapies for Canadians living with myeloma. These walks are all festive events that
support our myeloma community, and celebrate life and hope. This year, for the first time, Myeloma Canada has issued a Personalized Distance Challenge. When you register, you can
set a personal distance goal and track yourself from the time you register until the date of the actual walk—a great way to stay active and healthy!
To register or donate go to: https://www.myelomacanada.ca/en/get-involved/multiple-
myeloma-march. You can also select a specific location and date using the following links:
Virtual March September 2020
Cobourg Saturday, October 3, 2020
Hamilton Saturday, September 12, 2020
Oshawa Saturday, September 26, 2020
Kitchener-Waterloo Sunday, October 4, 2020
Mississauga Sunday, September 27, 2020
Newmarket Sunday, October 4, 2020
A decision has not yet been made for each location on whether the event will be live or virtual, due to COVID-19. Updates about this will be provided on the website linked above.
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Choosing Hope Book Launch and Podcast
A fabulous book launch was recently
presented by Toronto Lit Up, on Zoom! Munira was interviewed by Huse Madhavji,
Actor/TV Host. A recording of the book launch may be seen
here: https://youtu.be/lgY-DbuJ-G4
Choosing Hope: 1 Woman, 3 Cancers, by long-standing member of the Toronto Support Group Executive, Munira Premji, is now in print
with great reviews. In this remarkable and inspirational story, Munira describes how she battled three advanced cancers—Stage 4 non-Hodgkin’s lymphoma, Stage 3 multiple myeloma, and Stage 3 breast cancer—within a period of five years. Choosing Hope is a truly
heroic story about resilience and hope in the face of overwhelming odds. Also included in the book are the voices of some of Munira’s closest family members, including her life partner
Nagib Premji.
Reviews of Choosing Hope “The story recounted here by Munira, her husband, and their grown children is an empowering
tale of courage, optimism, survival, and triumph. From a real world calamity they bring forth a remarkable tale of hope and endurance.”
—Dr Rodger E. Tiedemann, Hematologist and Senior Scientist, Princess Margaret Cancer Centre
“A captivating, true account of struggle and survivorship and an inspiring testimony to the human spirit.”
–Dr Norman Franke, Clinical Associate, Autologous Blood and Marrow Transplant Program, Princess Margaret Cancer Centre
Choosing Hope. 1 Woman. 3 Cancers, by Munira Premji. Published by Mawenzi House Publishers Ltd. © 2020, Munira Premji. ISBN: 978-1-77415-005-4.
Available for order from online and other retailers, including:
Mawenzi House: https://www.mawenzihouse.com/product/choosing-hope/
Another Story Bookshop: https://anotherstory.ca/?q=h.reports.iv&eisbn=E8_pcHiTUq0fSEWk2A8B9g Chapters Indigo: https://www.chapters.indigo.ca/en-ca/books/choosing-hope-one-woman-
three/9781774150054-item.html
Amazon (Canada): https://www.amazon.ca/Choosing-Hope-Woman-Three-Cancers/dp/1774150050
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Listen to the new podcast series by Munira Premji, “Choosing Hope: Ordinary People Doing Extraordinary Things”, linked here: Launching My Podcast – Choosing Hope:
Ordinary People doing Extraordinary Things
Fundraising
If you are interested in making charitable contributions to organizations dedicated to Multiple Myeloma, the following are noteworthy.
Myeloma Canada Myeloma Canada is the only Canadian national organization dedicated solely to the benefit of
Canadians affected by myeloma, through education and support, research, promoting access to new therapies, and public awareness. Myeloma Canada has charitable status and donations
will be deductible for tax purposes. Donations can be made online at www.myeloma.ca. Myeloma Canada Email: [email protected]
1255 TransCanada Hwy., Suite 160 Website: http://www.myeloma.ca Dorval, QC H9P 2V4 Telephone: 1-888-798-5771
Princess Margaret Cancer Foundation – Myeloma Research Fund (Bloom Chair)
The Princess Margaret Cancer Foundation 610 University Avenue, Toronto, ON M5G 2M9
Telephone: 1-866-224-6560 Email: [email protected] Please make sure to specify the Myeloma Research Fund in the memo area of the cheque, as
the funds will otherwise go into the hospital’s general cancer research fund. The Princess Margaret Cancer Foundation, c/o Myeloma Research Fund, has charitable status for tax
deduction purposes. Donations may be made online through the Princess Margaret Cancer Foundation, at:
http://www.thepmcf.ca/Ways-to-Give/Donate-Now. Select the “Myeloma Research Fund”.
International Myeloma Foundation (IMF):
Dedicated to improving the quality of life of myeloma patients while working toward a cure.
International Myeloma Foundation 12650 Riverside Drive, Suite 206
North Hollywood, CA 91607, USA Tel: 800-452-CURE
Donations may be made online at www.myeloma.org. Unfortunately, the IMF does not have Canada Revenue Agency recognition for tax deduction purposes.
SPECIAL THANKS TO MYELOMA CANADA FOR THEIR FINANCIAL SUPPORT OF THE TORONTO
AND DISTRICT MULTIPLE MYELOMA SUPPORT GROUP
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Summary of Presentations – June 6, 2020 Support Group Meeting
Presentation #1. Digestive Issues for Myeloma Patients
Ernie Mak, MD, CCFP,
Supportive Care Physician Princess Margaret Cancer Centre
Thank you to Munira and Dave for a lovely introduction. It's always a pleasure and an honour to be back here talking with you and sharing what I do. I am a lifelong learner and it is
always great to hear from you, your stories and experiences, and how you cope with illnesses. Just being with you teaches me to be a better doctor and better person every day. So, thank you again for this opportunity.
I'd like to share with you some digestive system issues today. We know that many patients
going through cancer treatment or even recovering from treatment can experience these very bothersome symptoms. We will talk about strategies you can use as well as things you can discuss with your healthcare team to alleviate or treat these symptoms.
We'll talk about what causes nausea in cancer, especially in myeloma patients, and what we
can do to help manage it. We will also talk about mucositis or mouth sores and discuss the causes and how to manage them.
Nausea
So, we'll start with nausea. I'm sure many of you have experienced nausea at some time of your life, whether in the context of myeloma or not. What causes nausea? There are three areas that lead to nausea in the body. In many ways, it is a protective mechanism to warn us
that something is wrong with our body. The main causes relate to the digestive tract, from the mouth all the way down, our central nervous system, and the overall body as a whole.
Starting with the digestive tract, infections can cause nausea. The most common infection in cancer patients may be thrush or candidiasis, which is basically a fungal infection in the
mouth or esophagus. Other infections such as bacterial, viral or parasitic infections can also cause nausea. Irritation of the pharynx (throat) or stomach can also cause nausea. As well,
slowing of bowel motility can sometimes cause nausea. This can occur from some medications. Unfortunately, many medications prescribed for multiple myeloma can cause
slowing down of bowel activity, particularly pain medications in the morphine or opioid family. Other patients may have an enlarged liver which pushes on the stomach or bowels, causing a
change in the rhythm or movement of the bowel. Typically, our body has a rhythm to move the bowel. However, in cancer patients the disease disrupts this rhythm, often causing
nausea. Other bowel issues which may cause nausea are bloating, caused by stretching of the bowel by tumour tissue. In myeloma patients, we sometimes see plasmacytosis, where a large lump (plasma cell tumour) causes a blockage in the bowel. When food can't go down, it
has no place to go but back up, which is when you feel nauseous or vomit. Some patients will develop mesenteric metastases which are tumours of the lining that connects the bowels
together.
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Nausea can also be caused by our central nervous system. There is actually a vomiting centre
in our brain stem that can receive signals from the gut, but also from within the brain. The chemo triggered zone (CTZ) is a part of the brain which is very sensitive to chemicals or
medications. Chemo drugs can act directly on this part of the brain and trigger nausea. Other things that can contribute as signals to our vomiting centre may be other sensory inputs such as looking at or smelling food, pain or movement from the inner ear, such as
vertigo.
The vomiting centre takes information or input from many different sources. Unfortunately, there are quite a few medications that can cause nausea, such as opioids. Cytotoxic (chemotherapy) drugs can also cause nausea. As well, some anti-depression, antiviral or
antibiotic drugs can cause nausea. The brain can also just create an out-of-the-blue reaction, which is called an idiosyncratic response. This has no rhyme or reason, it just happens.
Another thing within our brain that can cause nausea is higher pressure in the brain, because of a tumour or an infection. And as we said, movement can sometimes cause nausea when
the inner ear gives the wrong signal.
In myeloma patients, especially, high blood calcium can cause nausea. As well, nausea can be caused by the kidney or liver not functioning well. A systemic infection of any kind can
cause nausea. We also have to consider that our mind can affect our body's function. Anxiety and
emotional distress can be causes of nausea. Poorly managed pain, which the body may interpret as a dangerous situation, can activate other alarms in our system, including nausea,
to warn us to protect ourselves. Some patients suffer from anticipatory nausea, which is the brain recognizing certain factors which can lead to nausea. For example, some patients will begin to feel nauseous entering the hospital or sitting in the chemo chair before receiving
treatment.
So, what can we do, knowing that there are so many potential causes for nausea? For yourself and your healthcare provider, it is beneficial to keep a symptom diary which identifies what was happening when the nausea began: How did the nausea come on? Did you vomit?
Was there pain?, etc. This will inform your team if any investigation needs to be done, whether it be blood work or imaging. If the nausea is being caused by the treatment, it may
be necessary to adjust the dose or frequency. What can you do to help yourself?
- Avoid the sight or smell of food or other odours that may trigger the nausea - Take small, frequent, bland meals
- Maintain good oral hygiene to dampen the nausea sensation - Try ginger or peppermint tea. Something warm can help soothe the throat and
reduce nausea
- Stay hydrated - Manage constipation
Unfortunately, the brain over-learns nausea and becomes too sensitive to nausea over time. You may have to un-train the brain and teach it to cope with nausea in a different way.
Cognitive behavioural therapy and relaxation techniques (such as music, art, meditation or deep breathing) can assist to dampen the nausea signal. It is important to ensure a cool,
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comfortable environment with proper air circulation. Research shows that air moving across your face actually helps with nausea and shortness of breath.
Research into alternative therapies such as acupuncture and acupressure are not conclusive,
but as there is usually no significant harm from them, they may provide relief for some. A chart can be found on The Dana Farber Cancer Institute website which displays anti-nausea acupressure points (https://blog.dana-farber.org/insight/2016/12/how-to-perform-
acupressure-for-vomiting-and-nausea). As well, some pharmacies have bracelets containing a bead which activates the anti-nausea acupressure points.
If none of these things work, inform your health team who can prescribe medication to alleviate nausea. Anti-emetic medications block or dampen the signals in the vomiting centre
in the brain. Steroids can assist as they have an anti-inflammatory reaction, but they also may be used to stimulate appetite and treat pain. Anti-anxiety medications are usually the
last resort to treat anticipatory anxiety. There is a lack of high-quality research into cannabis, so it is difficult to know exactly how
effective it may be against nausea. There are some studies and patient testimonials which indicate it does help. It may be an option for some patients.
Mucositis Next, we're going to talk about mucositis. So, what is it? It really is mouth sores. It can be
damage to lining of the mouth, redness, inflammation or ulceration. In myeloma patients, particularly, it tends to happen with stem cell or high dose therapy. Approximately 90 per
cent of patients going through a transplant may have some level of mucositis. For patients on thalidomide, lenalidomide or bortezomib, it's much less common.
Why is it a problem? It can cause a lot of pain when eating or drinking which then reduces nutritional intake. As well, when you have open sores on your mouth, you can have an
increased risk of infection. These issues can lead to delays in treatment. What causes mouth sores and mucositis? The main thing in cancer is the treatment, the
chemotherapy and the radiation treatment, but also irritants to the lining of the skin of our mouth, like smoking or alcohol.
Patients with other chronic health problems like diabetes or other immune disorders or previous organ transplant recipients on immunosuppressants may also suffer from mucositis.
As well, patients who suffer from malnourishment, poor dental hygiene, ill-fitting dentures or dental implants can suffer from mouth sores. Unfortunately, the older we get, the risk for
mouth sores is higher due to slower healing and thinner skin, including the skin inside the mouth. And finally, patients who are not able to access good nutrition or good dental care or even general healthcare, are at higher risk of mouth sores as well.
How can we help prevent mucositis? The main thing is to ensure adequate hydration. When
the lining of the mouth is moist, it tends not to crack as easily. Avoiding irritants like smoking or drinking and maintaining good oral healthcare are also very important.
How can you help alleviate mouth sores once they have developed? Start with bland, soft even pureed food because it's easier to process and will not be irritating the lining of the
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mouth. Avoid foods that are rough in texture as they scratch the inside of the mouth, and foods that are acidic, salty or spicy. And make sure the food is neither very hot nor cold;
room temperature is best.
Liquid nutrition supplements are good to use as a supplement to regular meals. You can also make your own smoothies, but you may need to research recipes specifically for cancer patients to ensure they are neither too acidic nor tart.
As previously stated, oral hygiene is of the utmost importance. Use a soft toothbrush so as
not to irritate the mouth. Avoid alcohol mouth rinses. Avoid club soda due its to acidity. Try a bland rinse such as four cups of warm water, 1 teaspoon of salt and 1 teaspoon of baking soda. Make sure to change the rinse on a daily basis. If that is not enough, sometimes
topical anaesthetics can help by creating a numbing effect. For severe pain, opioids may be prescribed.
Questions and Answers
Q. What causes abdominal pain when eating?
A. There are many reasons for abdominal pain, such as acid reflux or peptic ulcer disease. Tumours or cancer pressing on your stomach can also cause pain.
Q. What are the best strategies for constipation? A. There are several strategies for constipation. Number one is staying hydrated. Secondly,
have a variety of vegetables and fruit for their fibre. Also, physical activity stimulates the gut motility and improves your appetite. Any activity is good, rotating your ankles while
seated or stepping in place will help. Ask your health team for the best individual advice. Q. Does nausea tend to decrease over time, even on the same chemo?
A. That's a good question. It really depends on the person and the kind of chemo drug you're on. Unfortunately, for many people, they don't see the nausea get better over
time. You must report ongoing nausea to your physician as it may cause more delays and reduced efficacy of the treatment.
Q. Whenever I feel nauseous or anticipate nausea, I take Gravol suppository and that seems to work immediately. I just wonder, how does it work?
A. It is one of those things that helps dampen the signals in the vomit centre. It is particularly helpful for nausea that is triggered by motion or inner ear imbalances. In general, we try not to use Gravol. We call it a dirty drug in that it actually works on
multiple chemical pathways in the brain. So, although it works well for some people, it can cause side effects for others such as dry mouth, sleepiness or confusion. There is a ginger
tablet made by Gravol which does not have any prescription medication. Always discuss this with your physician.
Q. What can one do about diarrhoea? A. That's a very good question. It's actually good for a talk at a different time. The main
thing is to find out the source or cause of the diarrhoea. Is it caused by infection or medication? There's no one quick fix. It needs to be customized, depending on what’s safe for you.
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Q. How common are esophagus problems following a stem cell transplant and how long do they last?
A. Esophagus problems really depend on the person. In some people it is not noticeable and in others, it is very severe. There are several reasons for that: how was your gut and skin
health before you went on treatment, are you someone who is sensitive to the chemo toxic effect, what other medicine has been involved? But typically, the mucositis in either the mouth or the esophagus start about a week after the transplant. How quickly it goes
away, again, depends on the patient. Some people have last only a few days while others have it last for several weeks.
Q. Is there data with respect to prolonged, increased acid reflux that causes chest pain? A. Again, this depends on whether there is a pre-existing diagnosis of acid reflux, how well it
was managed before and what else is happing with the illness. It is important to bring up any issues with your healthcare team. The Palliative Care team can really help following a
stem cell transplant to aid your healthcare team manage your symptoms. Q. What can you do to ease very hard bowel movements while undergoing chemo?
A. The definition for constipation is having slower bowel movement over time, so instead of your regular routine, you are having your bowel movement over a few days. It is hard and
painful to pass. We've spoken about good hydration, eating foods rich in fibre and incorporating as much physical activity as possible. If those don't assist, you may need to
start on some laxatives. Typically, one would use Senokot which is available over the counter. Some people use an herbal laxative tea. Another good laxative is Restoralax which pulls fluid into the bowels, making the stool softer and easier to move.
Q. Does anyone have referrals for cookbooks for cancer patients?
A. The Long Table Cookbook by Amy Symington is one [available through gildasclubtoronto.org/cancer_nutrition/]. There is a website called nourishonline.ca by the Canadian Association of Dieticians geared towards cancer patients. A lot of hospital
patient libraries have this information.
Q. Is mucositis reversible? A. Yes, depending on the timing and severity. This is where your medical team can help by
following up with you.
Q. For smoldering myeloma patients, is it safe to delay treatment until later?
A. It really depends on the status of your illness. It is important to speak to your team. The decision needs to be made in the moment, depending on your status.
Q. I've been taking a slow release morphine and with it, I have been taking stool softener and Senokot. Is that a problem? My healthcare team doesn't seem to be worried.
A. There are several things to consider. Is it safe to be on pain medication long term? I would say if you're being followed by your healthcare team and everything seems to be in order, there are no problems. It is reasonable to continue pain medication long term
especially if it has been helpful for your quality of life and function. Constipation is, unfortunately, a side effect of morphine. I would say continue with your regimen until
your health team advises otherwise or you notice any problems in terms of pain control.
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Presentation #2. COVID-19 and Healthcare
In addition to his formal presentation above, the Toronto and District Multiple Myeloma
Support Group invited Dr. Mak to make a special presentation on his reflections on COVID-19 and healthcare from his perspective as a palliative care physician. Dr. Mak kindly shared the following observations with the group.
This pandemic has really affected all of us in many ways. I'm just going to do a very quick look back on how it has changed the world as we know it and how it may affect us going forward. For me, in my medical practice, I think there are a lot of lessons we've learned
about life in general that will hopefully help us get through this together.
As you may remember, this all started back in 2019, which is why the virus is named COVID-19. It began in China with several cases of atypical pneumonia. It escalated quickly in the new year, in the first part of January, with the first death related to COVID. At that point,
China informed the World Health Organization (WHO) of the disease. It spread outside of China quite quickly and by March, the WHO declared it a global pandemic.
Looking at Canada, the numbers increased rather rapidly due to repatriation of overseas Canadians, as well as increased testing. There was a huge spike in April through May, but
thankfully, things are beginning to decrease and many cases have resolved. Unfortunately, there have been many deaths as well.
How has this impacted healthcare? We know that our healthcare system was overstretched at
the best of times, even pre-pandemic. The whole idea of flattening the curve is to reduce a huge spike in numbers, with which the healthcare system would not be able to cope. We saw this in Italy, where so many people became very ill and needed to be admitted to hospitals,
which could not cope.
In order to facilitate social distancing, we all have to get used to virtual health calls. It's a steep learning curve as much for the patients as it is for the healthcare teams. Many patients are more elderly and not tech savvy and it is difficult to get to a virtual call. Many do not
have access to a smart device that allows them to do that, so they end up being lost and falling through the cracks. And patients who are already admitted to the hospital may not
have a way to connect with their family. And too, we know the disaster with the long-term health system where we have failed the
very valued section of our society, our seniors. We have not created the proper facilities for the seniors or the staff, so when a crisis like this hit, it is not a surprise that many walked off
the job, as they had their own families to consider. This is a big wake up call to all of us. Another unexpected phenomenon that occurred was racism. Because we know the virus
originated from China, there are, unfortunately, a lot of political overtones, some politicians using it to further their political agenda, fuelling racism that already existed. There were
healthcare providers attacked personally because of their skin colour. So, a crisis like this, unfortunately, brings out the worst in our society and our human nature.
Thankfully, there are many uplifting moments as well, because a crisis can also bring out the good in us. As someone who works in the healthcare system, I can definitely say I appreciate
the support I've received from many of you, from patients, from the families who are always
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so grateful, from the public with their displays of banging pots and pans, from restaurant owners who donate food.
So, for myself, reflecting on the past three months, I realize that as a species, humans are
communal beings. We really don't like being apart. We treasure being together and sharing physical touches, to be able to hug and talk to loved ones; it's so important that we cherish each moment that we have because you never know what comes around the corner next.
There have been difficult times but we're starting to come through the other end of it. We
have lost many things that are important to us but, hopefully, we've gained many things or been reminded that we still have many things that are important to us. So, to close my part, I hope we can all live well, laugh often, and love much! I think, together, we can get
through this.
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