Ruth’s in remission and smiling after 14 years treatment-free
Ruth Lansdell made the most of the “14 good years” she had before moving into the treatment phase of CLL last year and she’s now relishing her time in remission.
This included completing her Bachelor of Education and graduating a month before her 70th birthday, well after retiring from a career in education.
And after finishing treatment in May this year and being told she was in “total remission”, Ruth’s focus has been studying for her Diploma in Family History. Since enrolling in July, she’s put in many hours of study, research, written exercises and assignments, and she’s looking forward to her graduation ceremony next August – a month before her 80th birthday!
Diagnosis and what followed
Ruth was 64 when she was diagnosed with CLL in late-2004. It first showed up as “an anomaly” after a blood test, following an attack of atrial fibrillation. Then, repeat bloods a month later confirmed she had CLL.
“My GP visited me at home to offer support and explain the implications of the diagnosis. As I was living alone, this support helped me tremendously and allayed fears I was experiencing,” said Ruth, 79, of Hobart.
“When I heard the word ‘leukaemia’, I felt tremendously concerned, as my mother had been diagnosed with acute leukaemia in 1988 and died a few months later.
“I knew nothing about CLL but set out to investigate and learn as much as I could, as I believe that knowledge is power and can alleviate symptoms of stress and unnecessary worry.”
Ruth was referred to a haematologist and at her second appointment was told she may need treatment soon as her lymphocytes had almost doubled in a short period of time.
But then they slowed, treatment was postponed, and Ruth had six-monthly check-up appointments along with a blood test and a physical.
“Strangely, in 2008, my lymphocytes dropped to normal levels and I assumed that was how they would stay.”
But in 2012, Ruth’s levels rose again and there was an increasing upward trend in her lymphocyte and white blood cell counts, and in 2017, her haematology check-ups became more regular – every two months.
In February 2018, Ruth’s haematologist told her she was transferring into another area at the hospital, so Ruth would have to find another haematologist.
Successive infections in the lead up to starting CLL treatment
This coincided with Ruth having problems with ongoing urinary tract infections (UTIs) as well as cellulitis in her arm and a badly infected toe that weren’t responding to normal antibiotic treatment.
“No sooner had one UTI cleared, than I had another. Altogether, I had five visits to A & E for treatment with powerful antibiotics,” said Ruth.
Her new specialist, concerned at the number of infections she was experiencing, and her “worrying pathology results”, referred Ruth for bone marrow biopsy, further blood tests and a CT scan with contrast.
“At my next appointment, he talked at length about the results.
I recommend anyone else in this situation to take a family member or friend with them,” said Ruth, whose only son lives in Brisbane.
“Being independent, I went alone and now regret that.
“I listened and assured my specialist that I understood what he was saying. But, on reflection, I recalled little other than… I needed chemotherapy and had a deletion of the chromosome 11q.”
And, because this specialist only did reviews at the hospital, Ruth was referred to yet another haematologist, who in turn also referred her to a urogynaecologist.
“It was deemed necessary to fix the ongoing problems [UTIs] I was experiencing, before I began chemotherapy.”
This required surgery and the outcome from the operation in October 2018 “was excellent” but the other issue, and a factor in her ongoing infections, was Ruth’s immune system; “it was 50% lower than it should have been”.
The standard treatment was a monthly infusion of blood plasma, but Ruth was selected for a clinical trial that involved taking a standard antibiotic, Bactrim DS – one tablet a day for a year. And when the trial finished in August 2018, her haematologist kept her on this drug, at a reduced dose and frequency, as a preventative measure to keep infections at bay.
Ruth’s CLL treatment on an international clinical trial
Finally, after the successful bladder surgery, Ruth began chemotherapy on an international clinical trial with two arms. One was treatment with a new experimental drug, zanubrutinib, and trial participants with chromosome 17p deletion automatically went on this arm.
The other arm was standard treatment, bendamustine, with rituximab – the protocol Ruth started in December 2018. This involved two days of treatment in 28-day cycles over six months. She felt “okay” after the first round, but with the second cycle, Ruth became very nauseous, with severe vomiting and loss of appetite.
“The anti-nausea medication proved to be ineffective,” said Ruth, who was then given a more powerful anti-nausea drug, ondansetron, which she was prescribed for the rest of her treatment.
Treatment symptoms and side-effects
“I did lose quite a bit of weight and there was some concern over this,” said Ruth.
Advice from an oncology dietician helped.
Ruth also had an issue with her eyesight – blurred and double vision, plus pre-migraine type auras. This was fixed with a new set of glasses as the vision in one eye had dropped dramatically.
“I have the auto-immune condition, Sjögren’s syndrome, which impacts negatively on dental health. Suddenly my top front teeth deteriorated badly and after treatment finished, they had to be extracted,” said Ruth.
“I had to wait three months before I could have a partial plate, and now I have the best smile I’ve had in years!” said Ruth.
Post treatment tests and procedures
“My treatment ended in May 2019 and I was informed I was in total remission, which is wonderful,” said Ruth.
She continues to take an antiviral medication to prevent shingles, and says that for some time, fatigue and a lack of energy were ongoing physical effects.
“And I would be lying to say the experience did not have an impact on my mental health.”
The bone marrow biopsy Ruth had as part of the trial, to confirm her remission, also revealed iron deficiency anaemia, which was the cause of ongoing fatigue. The anaemia was effectively treated with an iron infusion.
“Bendamustine is notorious for having an impact on the stomach,” said Ruth, who also had a gastroscopy and colonoscopy, as part of her post-treatment trial follow-up.
“The gastroscopy revealed multiple gastric ulcers, one being quite large. I was placed on medication and a follow-up gastroscopy a month ago [September 2019] revealed all the ulcers had healed – wonderful news.
“My haematologist told me that the average time for remission for those with CLL is three years, although some come out of remission very quickly.
“I’m hoping for three years or even more. By then, hopefully, new drugs like zanubrutinib will be available on the PBS.
Life after CLL treatment
“Reflecting on my journey, I feel positive about the future and fortunate to have come through with a very good result,” said Ruth, and she believes having CLL has given her a more positive outlook on life.
“I am indebted to the Leukaemia Foundation, and the Cancer Concierge service, a pilot support program initiated by the Leukaemia Foundation. Significant emotional support was invaluable when I was dealing with a personal issue. Both helped me access financial support, when I desperately needed it.
Ruth’s personal advice
“I strongly recommend these services and urge those diagnosed with a blood cancer to seek support, to reach out to others, and above all, seek information.
“And engage in activities you enjoy, exercise and try to maintain a healthy lifestyle.
“Rest and relaxation are also important, along with meditation.
“Remember, your oncologist and medical support team have undertaken years of specialised study and research and they are best equipped to help and advise you.
“Go well, be positive and make the most of your opportunities,” said Ruth.Last updated on November 7th, 2019
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