Amyloidosis and myeloma: Diagnosed day before 66th birthday
Janette Elson and her husband, Charles, were living what they described as a very happy life in the sleepy beachside haven of Woodgate near Bundaberg when life took an unexpected turn.
“I had never heard of amyloidosis or myeloma until four years ago,” Janette said. “I probably had the same attitude as most people about getting a life-threatening illness – that won’t happen to me!”
In early 2012 Janette experienced a range of unrelated symptoms: pain in her skull, dizziness, a series of infections and a general feeling of being unwell.
Fortunately Janette’s doctor took her symptoms seriously and did a series of blood tests and scans.
“He thought I had an autoimmune issue, but when he eventually suspected myeloma he sent me to a haematologist in Brisbane,” she said. “The day before my 66th birthday I had my diagnosis – smouldering myeloma.”
Because her immune system was compromised, the haematologist started Janette on monthly rounds of Intragam P, as well as Zometa to help avoid the bone disease issues associated with myeloma.
“We made the 800km round trip to Brisbane every month and nothing really changed until May 2013 when a scan revealed a diffuse infusion in my lungs that resembled ‘ground glass’.
“At first it was diagnosed as interstitial lung disease, a separate but untreatable illness.
“However, further lung tests and scans revealed deterioration in the condition and the decision was made to do an open lung biopsy. This revealed that the ‘ground glass’ was in fact both myeloma and amyloidosis.”
The decision was made to start chemotherapy immediately followed by an autologous bone marrow stem cell transplant if Janette responded well to the chemotherapy.
Treatment went very well apart from a hiccup with Janette’s pacemaker on the fourteenth day of each cycle when she became dizzy, her heart rate fluctuated and she had to be admitted to coronary care. Both the protein and long chain cell count fell to nothing and her transplant took place on 25 January 2014.
“There were some difficult times throughout the transplant process but the process worked wonderfully,” she said.
Since her diagnosis, Janette said the Leukaemia Foundation has been a great support for her and Charles.
“We were so grateful that they provided almost 200 nights of free accommodation for both of us, firstly in a motel and then in a two bedroom unit at Clem Jones – Sunland Leukaemia Foundation Village in Brisbane.
“Not only was the unit first class but the staff were totally committed to the welfare of the patients and their family members. It was amazing.
“I am also so thankful to my haematologist and the staff at the Greenslopes Hospital in Brisbane who were fantastic throughout the whole process. They cared not only for me, but also for Charles.”
Janette described Charles as her tower of strength throughout her illness.
“He has attended every medical appointment and procedure with me, and after each appointment we had long discussions which were really helpful.
“He was always there by my bed during the transplant and nursed me through the darker days of chemotherapy,” she said. “He now introduces me as his bionic lady as I now have a porta-cath on one side and a pacemaker on the other.”
In mid 2014 scans and a lung biopsy showed no detectable myeloma cells in Janette’s lungs and the amyloidosis protein had also responded very well to treatment, although her haematologist said it might take four years to disappear completely.
The amyloid protein in Janette’s lungs has created cysts which have reduced her lung gas exchange to 56%, although her total lung capacity has been unaffected.
“I have been very fortunate as no deterioration has occurred in nine months of testing and I now only have to see the lung specialist once a year.
“In early 2015 my haematologist gave me the great news that I was in remission from the myeloma as no cells could be detected.
“I am feeling absolutely great. Charles and I have just returned from a five-week holiday in the United Kingdom.
“The air travel tired me out more than I anticipated and I got a chest infection, but it was well worth it,” she said.
Update May 2016
Janette will turn 70 next month with the good news that specialists have given her the all clear from both the amyloidosis and myeloma.
Her and Charles will also be returning to the United Kingdom shortly.
They continue with their volunteer work with the State Emergency Service (SES): Charles as Acting Local Controller Bundaberg and Janette as a trainer in both her local group and the regional area.
Janette has also started singing again with the Woodgate choir and will return to fitness classes once her chest infection goes.
“I am very content with my life. I still have the 800km round trip each month to Brisbane for Intragam P and Zometa but this is a small price to pay.”
Janette’s story first appeared in Amyloidosis News, our free publication featuring stories from those who have dealt with amyloidosis first hand, as well as research news and practical assistance and advice. SUBSCRIBE TODAY >Last updated on May 6th, 2016