Family Physicians Are the Key to Early Diagnosis

I retrieved a Myeloma Canada pamphlet called “Could it be Myeloma?” from the Toronto Support Group and it hit home with me because it’s simple and informative. It contains all of the information I was seeking when I was progressing from MGUS to Smoldering Myeloma. It starts off by saying “Every day, 7 Canadians are diagnosed with myeloma. Do you know what to look for? This is my go-to reference sheet I use when my mom or siblings ask which tests they need to get to find out if they too have myeloma (I believe it runs in families, although I believe the scientific evidence is inconclusive).

Family Physicians are the key to early diagnosis because they are the first and most important person the patient will meet on the path to diagnosis. However, given that patients present with fatigue and pain many are not given proper follow-ups and are told to rest and take an analgesic. These patients are on average are in their mid-60s and this trend delays diagnosis, thereby increasing complications such as bone fractures and kidney problems that can affect quality of life long term.

A timely diagnosis will lead to better overall patient outcomes and therefore an aid leading toward diagnosis has been established. It’s called The Myeloma Pathway which outlines the common presentations, not so common presentations and outlines a list of recommended initial testing.

The Physician Reference Guide can be found at http://www.myeloma.ca or you can contact Myeloma Canada at email: contact@myeloma.ca for the pamphlet.

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2019 National Conference for Patients and Caregivers

This year, I had the pleasure of attending the 2019 National Conference for Patients and Caregivers which was held on April 27th and 28th at the Radisson Admiral Hotel Toronto – Harbourfront. This was Myeloma Canada’s 14th annual National Conference, a 2-day event that featured speakers and panelists to connect with each other, to inquire, share and learn from others who understand the concerns, challenges and experiences we are living.

I particularly liked Dr. Christine Chen’s speech, Myeloma 101: Everything You Need to Know. It was very interesting and informative and the information I learned has helped me advocate for myself regarding treatment. I like that we had the opportunity to Ask the Experts during a Q & A Panel Discussion followed by Breakout Sessions where we could pick from a series of topics based on our own personal interests.

Examples of agenda topics included Treatment of Newly Diagnosed Myeloma, Treatment of Relapsed/Refractory Myeloma, Debunking Myths and Strategies for Healthy Eating, Care for the Caregiver: Strategies & Tools, Risk of Thrombosis in Myeloma, Cannabinoids and Myeloma: Management of Symptoms and Safety, New & Emerging Therapies for Myeloma, Inside the Myeloma Cell: How Science Leads to Treatment Strategies, and Management of Side Effects and Supportive Care.

All-in-all, it was a wonderful two days and it was an honor to have been given the opportunity to listen to the invited speakers whose passion is to improve the lives of Canadians impacted by myeloma. Can’t wait to attend next year!

The Myeloma Canada website is myeloma.ca

Carpal Tunnel Syndrome

I’ve had numbness and tingling in both hands for quite some time. My oncologist and I thought this could possibly be related to the REVLIMID I’m taking for maintenance after my first Stem Cell Transplant. My oncologist referred me to a neurologist at my local hospital who did quite an extensive set of EMG tests. The result: I have Carpal Tunnel Syndrome in both hands which causes numbness and weakness in the hands.

The carpal tunnel is a narrow passageway in the wrist, about an inch wide. The floor and sides of the tunnel are formed by small wrist bones called carpal bones. The carpal tunnel protects the median nerve and flexor tendons that bend the fingers and thumb.

What’s interesting to me is that the American Cancer Society lists Carpal Tunnel Syndrome as a sign and symptom of light chain amyloidosis. Patients with amyloidosis (discussed in What Is Multiple Myeloma? (/cancer/multiple-myeloma/about/what-is-multiple-myeloma.html)) can have some of the same problems as patients with myeloma, such as kidney problems and nerve damage.

At least now we know that the REVLIMID I’m taking is not the cause.

Symptoms: Pain, numbness and tingling

Nonsurgical methods may help improve carpal tunnel syndrome, including:
Wrist splinting. A splint that holds your wrist still while you sleep can help relieve nighttime symptoms of tingling and numbness.

Life Brand Slim Fit Support



Cancer Chat Canada

I recently joined a professionally-led online support group for people affected by cancer called ‘Fear of Cancer Recurrence’ offered by the de Souza Institute. Fear of a cancer recurrence is real, and it is a common reaction for people that have been diagnosed with and completed their cancer treatment (I have had 5 courses of CyBorD induction therapy, and stem cell transplant, and am currently on maintenance REVLIMID). This online support group had weekly sessions based on a resource and activity handout. The sessions included a review of situations where fear of cancer recurrence may occur. Therefore, the group is best suited for survivors who are mentally prepared to face the fear and committed to make a change with the support of the group facilitaor. During the group, tools and techniques were provided to me in order to build my ability to cope with stress, address emotions and promote recovery. I found this course to be extremely valuable in that I learned various new ways of coping and that I am not alone.

Weekly Topics Covered:

Week 1: Grounding, Orienting your senses

Week 2: Problematic Thinking Styles, Thought Stopping

Week 3: Using a Thought Record, Breathing Exercise

Week 4: Imagery and Relaxation, Quick Relaxation Techniques, Calming Self-talk, Wonder Woman Posture Grounding

Week 5: RAIN – Working With Your Emotions, 30-Second Hug

Week 6: Recovery and Rebuilding, The Wheel of Life

Week 7: Self-Compassion, Exploring Self-Compassion through writing, Self-Compassion Journal

Week 8: 5-Question Check in, Resources – Online and Community



Drug Side Effects

Cyclophosphamide – common side effects include nausea or vomiting (may be severe), loss of appetite, stomach pain or upset, diarrhea, temporary hair loss, a wound that will not heal, missed menstrual periods, changes in skin color (darkening), or changes in nails. Tell your doctor if you have: pink/bloody urine, unusual decrease in the amount of urine, mouth sores, unusual tiredness or weakness, joint pain, or
easy bruising or bleeding.

Bortezomib – common side effects include fatigue, generalized weakness, peripheral neuropathy (numbness and tingling of the hands and feet), nausea, vomiting, diarrhea, poor appetite, constipation, low platelet count, fever, low red blood cell count (Anemia). Less common side effects: headache, insomnia, joint pains, arthralgia, myalgias, swelling of the face, hands, feet or legs (edema), low white blood cell count, shortness of breath, dizziness, rash, dehydration, upper respiratory tract infection, cough, one pain, anxiety, muscle cramps, heartburn, abdominal pain, low blood pressure, itching, blurring of vision, blood test abnormalities (low sodium, low magnesium, low calcium, low potassium).

Dexamethasone – increased blood pressure, increased blood sugar, anxiety, avascular necrosis (death of bone tissue due to a lack of blood supply). Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone’s eventual collapse. The blood flow to a section of bone can be interrupted if the bone is fractured.

Acyclovir – feeling unwell (malaise), nausea, nausea with vomiting, diarrhea, abdominal pain, headache.

Amyloidosis Awareness

Amyloidosis is a disease in which abnormal proteins (amyloid) are resistant to being broken down. It’s a rare condition that’s often overlooked. There are a few different types.

11-minute video from YouTube

Some of the symptoms are unexplained weight loss, fatigue, shortness of breath, foamy urine, swelling in the ankles and legs, and numbness and tingling in the hands and feet.

You need only have one of these below as part of the differential diagnosis:

  1. Loss of massive amounts of protein in the urine.
  2. Stiff or thickened heart as seen on echocardiogram, low voltage seen on electrocardiogram, irregular heartbeat associated with normal or low blood pressure, or unexplained heart failure.
  3. Enlarged liver.
  4. Peripheral neuropathy such as Carpal Tunnel Syndrome, alternating bouts of constipation and diarrhea, and feeling light-headed when standing up.

After my Stem Cell Transplant, I’ve been experiencing heartburn, shortness of breath, and cardiac changes which are right side of heart enlargement, mild left ventricular hypertrophy, and moderate diastolic dysfunction. And because I have numbers 2 and 4 above happening more definitive testing is required. It has been suggested I should have a cardiac MRI scan and also reviewing any tissue for amyloid would be a good start. If the available tissues (bone marrow biopsy, tissue from any GI scopes etc) done show anything then one could consider a cardiac biopsy. A positive cardiac MRI would strengthen this decision.

There are Amyloidosis support groups that exist. Information, including local support meetings and a detailed list of regional doctors can be found at:

http://www.AmyloidosisSupport.org

http://www.AmyloidAware.com

Financing Drug Costs

In Ontario, patients are referred to their Local Health Integrated Networks (LHINs) Drug Access Facilitators who arrange for the cost of chemotherapy drugs. Some drugs are covered by Cancer Care Ontario. Some patients may have drug coverage through private insurance from their employer. For patients who do not have private insurance but who also have high prescription drug costs compared to their household income, might qualify for the Trillium Drug Program. The deductible is 4% of earnings.

In Ontario, your doctor can apply for ‘compassionate’ usage directly to the manufacturer so that the cost can be eliminated or lowered.