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Living With Sjögren’s

Patient Stories

Joyce's Story

SjSC Support Group Leader Profile:
Joyce Hambly, Kitchener/Waterloo/Guelph

Imagine being diagnosed with Sjogren’s and then finding out a few weeks later that you also have lymphoma?  That’s exactly what happened to Joyce Hambly back in early 2004.  She was dealing with some unusual and painful symptoms like swollen parotid glands and lymph nodes, losing her voice, and being out of breath when she walked.  She also lost 15 pounds in 3 months.  Her family doctor sent her to a hematologist who ordered a CT scan and a biopsy of her lungs. Tumours found on her parotid glands, esophagus, heart and liver confirmed Burkitt-Like lymphoma.  With a full-time career in insurance underwriting, a husband, two young teenagers at home, and not to forget a Sjogren’s diagnosis, Joyce was about to embark on the fight of her life.  

As we know, Sjogren’s patients have a significantly increased risk of developing lymphoma. Burkitt-Like lymphoma is a rare and aggressive form of non-Hodgkin’s lymphoma. It progresses rapidly, always requires treatment but it’s often curable.  In addition to tumours, swollen glands and enlarged lymph nodes, other symptoms related to Burkitt-Like lymphoma are loss of appetite, weight loss, fatigue, night sweats, and unexplained fever.  

Under the watchful eye of her hematologist, Joyce endured nine rounds of chemotherapy from May 2004 until January 2005, most of which had to be administered by IV during extensive hospital stays.  The chemo consisted of Rituximab and many other types of drugs. She often had to return to the hospital in between rounds due to high fever and infections.  Because Burkitt-Like lymphoma is quite rare and the oncology nurses were not that familiar with the protocol, Joyce took on the responsibility to ensure the schedule for the chemo administration was followed.  By the end of the nine rounds, she started to feel much better with less pain and swelling. 

By March 2005, Joyce was very relieved to learn that all was clear, the lymphoma was gone! How did she get through the intense treatment?  She attributes it to her deep faith, positive attitude and strong family support. It was never an option not to keep going and finish the treatment.  Joyce had no time for anger or a “pity party”.  

One of the positive benefits of all the time spent in the hospital is that Joyce had time to research Sjogren’s to really learn about and better understand the disease.  She realized that she may have had Sjogren’s since childhood when her dentist yelled at her for having so many cavities. As a child, she remembers waking up during the night with a bone dry mouth and needing to drink water. She required dental surgery on her gums when she was much younger.  The dentist who did the procedure observed that she had very little saliva and had mentioned Sjogren’s to her but she was unable to find out any information about it. 

Today, her most challenging Sjogren’s symptoms are dry eyes, dry mouth, fatigue, brain fog, and acid reflux.  She takes five different prescription medications for those symptoms including hydroxychloroquine, Restasis, and pilocarpine. At work she spends a great deal of time on the computer so she has regularly scheduled “blink breaks” and “mental breaks”.   

In 2015, Joyce decided to take on the role of Support Group Leader for the Cambridge, Guelph, and Kitchener area. Her meetings are held at local libraries about four times per year.  She brings in speakers and encourages members to share product and treatment information.  Her gratification comes from providing that “space” for Sjogren’s patients where they are understood and supported, and realize they are not alone with this complicated disease. Several members of her support group also have other autoimmune diseases and, coincidentally, some have also dealt with lymphoma.  

She says her perspective on life changed as a result of dealing with cancer and Sjogren’s.  Instead of always focusing on retirement, she lives for today: enjoying time with her husband, her children and four grandchildren, travelling, and driving her convertible. This month Joyce will reach a major milestone, her 60th birthday.  She will focus on living in the present, accepting her limitations and living life to the fullest!