Well-Being and Pain in Survivors of Childhood Cancer

Researchers at Alberta Children’s Hospital are now enrolling individuals ages eight to 25 with a history of childhood cancer for an online research study. Questionnaires will ask survivors about their current health and well-being as well as their mood. Parents are also invited to participate. Findings from this study may help children with a history of cancer in the future.

Please contact the study team at michaela.patton@ahs.ca or 403 476 2676 if you are interested in hearing more!

Compassion for Children, Parents/Guardians and Health Care Providers

Despite its reputed centrality to healthcare, compassion remains ill-defined, being conceptualized as an attitude, feeling, trait or state that arises in witnessing the suffering of another. Although compassion has been well conceptualized in the adult cancer population, its importance, meaning and impact in pediatric cancer (8-<18 years) populations has not been studied. This study is being done by the Compassion Research Lab, Faculty of Nursing, at the University of Calgary. The team is looking for the following participants to take part in a one-hour interview, either face-to-face or online through Skype:

Pediatric patients

  1. Between the ages of eight to eighteen years old.
  2. Have been living with a cancer diagnosis for at least three months.
  3. Able to speak and understand English. 
  4. Willing and able to participate in a face to face or Skype interview (60 mins)

Parents/Guardians (P/G)

  1. Parents or guardians of a child (18 years and younger) who is living with a cancer diagnosis.
  2. Are actively involved in decision-making regarding their child’s healthcare needs.
  3. Able to speak and understand English.
  4. Willing and able to participate in a face-to-face or Skype interview.

All participats will receive a $20.00 gift card to either Starbucks, Toys R Us, and Chapter/Indigo.

If you and/or your child would like to participate in the study, please contact the Project Coordinator, Priya Jaggi at 403-220-7894 or parneetpriya.jaggi@ucalgary.ca. The Principal Investigator for this study is Dr. Shane Sinclair.

This study is funded by the C17 Research Network and the Faculty of Nursing Bridge Funding.

This study has been approved by the Health Research Ethics Board of Alberta (HREBA.CC-18-0174), and has received administrative approval.

Understanding Parents’ Experiences of Having a Child Survive a Malignant Pediatric Brain Tumour

Researchers at the University of Calgary are conducting a study examining how the parents of a child who has undergone treatment for a malignant brain tumour in childhood, are affected by this experience. They are looking for participants who are:

  1. The parent or legal guardian of a child who was diagnosed with a malignant brain tumour at 18 years of age or younger, has completed treatments (at least one year since the completion of treatment), and is currently in stable health (i.e., complete remission or stable residual tumour);
  2. Parent or guardian must be 18 years of age or older;
  3. Living in the greater Calgary area;
  4. Fluent in English.

Participation in this study is without payment and would involve one audiotaped interview of approximately 60-90 minutes in length. If you are interested in participating in the study, please contact Kaitlyn Francois RN, MN, Doctoral Candidate at kdfranco@ucalgary.ca or 403 470 8983. The Principal Investigator for this study is Dr. Nancy Moules.

The Health Research Ethics Board of Alberta – Cancer Committee (HREBA-CC), which oversees the ethical acceptability of research involving humans, has reviewed and granted ethics approval for this study. ID: HREBA.CC-18-0512

The MATCH Study

As more people survive cancer, the importance of research on effective interventions for improving quality of life amongst survivors is growing. Two interventions with a substantial evidence-base are Mindfulness-Based Cancer Recovery (MBCR) and Tai chi/Qigong (TCQ). However, these interventions have never been directly compared and they may help cancer patients in different ways.

MBCR focuses primarily on the challenges faced by people living with cancer. Different forms of meditation are introduced, beginning with a body scan and sensory awareness experience and progressing to sitting and walking meditations over the course of the program. Gentle Hatha yoga is incorporated throughout, as a form of moving meditation. Facilitator instruction, group discussion and reflection, problem solving, and skillful inquiry are also used.

Tai chi involves a series of slow specific movements or “forms” done in a meditative fashion to bring about a state of mental calm and clarity. Qigong exercises generally have three components: a posture (moving or stationary), breathing techniques, and mental focus on guiding chi/qi through the body. TCQ incorporates simple Tai Chi elements within a healing framework stemming from Qigong principles.

In order to participate you must:

  • Be over the age of 18
  • Have been diagnosed with any type of cancer (stage I-III) except brain
  • Have completed active treatment (i.e. surgery, chemotherapy, radiation therapy) at least 4 months previously (ongoing hormonal therapies, AIs, tamoxifen, herceptin does not preclude)
  • Be able to attend classes at scheduled times
  • Have sufficient functional capacity to participate (judged by PAR-Q questionnaire, study staff, participant and participant’s physician)
  • Be able to speak, read, and write English sufficiently to participate in all activities.

You are unable to participate if you are experiencing any of the following:

  • Your cancer is metastatic or you are currently on chemotherapy.
  • You currently engage in meditation or tai chi one or more times per week
  • You have participated in the MBCR program in the past.

What is required of participants?

  • Indicate whether you have a strong preference for taking either mindfulness or tai chi/qigoing classes. If you have a preference you will get the group that you want. If you don’t have a preference, we will assign you to one or the other randomly, like the flip of a coin
  • Once you are assigned to a group, you will either start within a week or two, or wait three-four months to start – we will tell you how long you are assigned to wait.
  • Before the group sessions begin, we will ask you to come into the cancer centre to complete a package of questionnaires on the computer (or on paper), which will take about 30-45 minutes. Then we will measure your blood pressure and heart rate for about 20 minutes, and conduct a few simple tests of your flexibility, balance and strength. Finally you will visit the lab either that day or over the next week, and have three small (10mL) tubes of blood drawn for later analysis.
  • Before your classes start, you will also collect saliva (spit) samples in little tubes at home, four times a day over three days.
  • Your classes will either begin shortly after that, or you will wait 3-4 months for the next class. If you are waiting, you will fill out the questionnaires and do the other tests one more time before your classes begin.
  • When your classes begin, they will occur once weekly for 9-11 weeks (depending on your group). Classes will be held at the Holy Cross Site of Cancer Control Alberta.
  • After completing your classes, you will once again complete the same questionnaires either online at home, or on paper, and visit the hospital again for the 20 minute blood pressure test, balance, strength and flexibility tests, and to provide another 2 tubes of blood.
  • 6 months later, you will once again complete the questionnaires, blood pressure test, balance, flexibility and strength tests and provide 2 tubes of blood at the lab.

To learn more or sign up for the study, please visit The MATCH Study website.

How cancer affects the boyfriend or girlfriend of an adolescent with cancer

Researchers at the University of Calgary are conducting a study examining how a boyfriend or a girlfriend of an adolescent with cancer, might be affected by this experience. If you are, or have been a boyfriend or a girlfriend of an adolescent who has or had cancer during the time of the relationship up to the age of 25, researchers would like to learn from you about your experience. Participation in this study is without payment and would involve one audiotaped interview of about an hour-and-a-half in length. If you are interested in participating in the study, please email Dr. Nancy Moules. Visit Dr. Nancy Moules website.

This study has been approved by the Ethics Board. ID: REB15-0282

Your support helped bring a new children’s cancer drug to clinical trial

The drug is called Carfilzomib and clinical health researchers at 10 major pediatric hospitals across North America are now evaluating it in a phase I clinical trial for difficult-to-treat children’s cancers.

Open to all eligible children with relapsed leukemia and solid tumours, the study will closely monitor and analyze the side effects of Carfilzomib to determine the maximum dose children can safely tolerate. The trial will cost approximately $3.5 million (U.S.) to administer.

Dr. Aru Narendran of the Alberta Children’s Hospital and University of Calgary and Dr. Jessica Boklan of Phoenix Children’s Hospital are the principal investigators in a new phase I clinical trial, studying the side effects of a drug called Carfizomib on children with high-risk cancers. Dr. Tony Truong, co-principal investigator at the Alberta Children’s Hospital, along with U of C clinical research staff, Karen Mazil and Pina Giuliano, are helping to monitor side effects and analyze findings from the study.

Previously tested and approved for use in adult patients, Carfilzomib has shown promise for treating adults with multiple myeloma—a high-risk leukemia. Studies in a University of Calgary lab revealed that the drug also acts on pediatric cancer cells. These findings from Dr. Aru Narendran’s lab were presented last year at a meeting of the American Association of Cancer Research.

Carfilzomib was originally synthesized from a natural substance made by a soil bacterium to protect itself. Scientists in Dr. Craig Crews’ lab at Yale University serendipitously discovered in 1998 that Carfilzomib also has strong anti-cancer properties. Their discovery led to clinical drug trials and FDA approval in 2012 for use in adults with multiple myeloma—a high-risk leukemia.

Carfilzomib’s anti-cancer properties lies in its ability to inhibit a mechanism called the proteasome, which cancer cells use for survival. Because cancer cells divide and multiply so quickly and recklessly, they make a lot of mistakes, leading to abnormally formed proteins within the cancer cells. These poorly formed molecules put stress on the cancer and threaten its survival. To get around this, the cancer cells increase their use of a mechanism called the proteasome to repair their mistakes. But by inhibiting proteasomes, Carfilzomib prevents the cancer cell from repairing itself and ultimately helps it to die of its own imperfections.

“The beauty of this drug is it goes after a mechanism used by all cancer cells, so it can be used against different cancers,” says Dr. Narendran a pediatric cancer researcher with the Experimental and Applied Therapeutics (ExpAT) program at the Alberta Children’s Hospital and the University of Calgary. “Normal cells don’t make so many mistakes, so this drug will be less toxic to normal cells, which may mean fewer side effects for children.”

Another promising attribute of Carfilzomib is that it works synergistically with other chemotherapies to boost their ability to kill cancer cells. This is especially important for chemo-resistant cancers.

“It’s kind of a safety net,” says Dr. Narendran. “Because the chemo agents and their toxicity are already known to us, we can use these chemotherapies with Carfilzomib to boost their potency for better outcomes.”

Although Carfilzomib looks promising, Dr. Narendran stresses that “What we know so far comes only from adult patients or from laboratory studies against pediatric cancer cells. We do not know if it will actually offer any benefit to pediatric cancer patients yet.”

As a phase I clinical trial, the study is not intended to cure children, but to understand its toxicities and determine suitable doses for treating children in the future.

Still, it is the first important step in a long quest to find safe and effective treatments for children with incurable cancers.

If it lives up to its potential, Carfilzomib may one day offer hope for children with incurable cancers.

If you are interested in this study for your child, please speak with your child’s oncologist to determine eligibility.