My name is Chris, and I live with my wonderful husband and daughters in the Dandenongs, to the east of Melbourne. We have lived here for nearly 30 years and we love our life in the hills.
This is the part of my journey that, like all of us with MPNs, I never expected to have. So here goes, the medical journey first!
My wonderful GP of over 30 years had mentioned a couple of times that I’d had a slightly elevated white blood cell count. This had been noted in my regular blood tests to monitor Rheumatoid Arthritis which I’d been diagnosed with five years earlier. These results were explained by infections I’d had at those times. Then in July 2016, it was recommended to my lovely Rheumatologist, by the pathology lab, that my increased level of basophils be investigated. I was then referred to a Haematologist, a very kind man who is now pretty much the team leader! I remember attending my first appointment and noting that the sign on the door read “Haematology and Oncology” and thinking this wasn’t the place for me! My husband hadn’t come with me as I thought it was just a formality and would be fine. I left with a possible diagnosis of Chronic Myeloid Leukaemia, which was a bit of a shock!
For several years prior to this, I had experienced episodes of facial swelling and numbness which were eventually diagnosed by my allergist as a reaction of my mast cells to various triggers. When I explained this to the Haematologist, he wanted to rule out mastocytosis (which he did) before proceeding with a bone marrow biopsy. Somewhere in this early stage, there was an agonizing wait of about 3 weeks for results and I remember how difficult this was. I just went to work every day and tried to keep busy…..torture! I was very organized on those weeks, busily trying to plan ahead for whatever may be coming!
Once all the results were in, we (my husband or one of my daughters usually come with me now) were told that rather than CML, which was treatable, he was sorry to say that I had Primary Myelofibrosis. We were stunned and didn’t really know what to ask. We were given a booklet published by the Leukaemia Foundation in 2016 on MPNs. This was a great resource as I could re-read it to let the facts sink in and give snippets to others to read as few people had heard of PMF. It was complex to explain and confusing to answer questions. Cytogenetic testing followed and confirmed that I have the JAK2 mutation. “Watch and wait” was the immediate future and I also saw a professor about an allogenic stem cell transplant. This is not considered a viable option as I don’t have a donor and it is perhaps less successful for Myelofibrosis. From what I have read, it sounds terrifying and I was relieved to not have to make that decision yet, but never say never, one day it may be the best or only option. The professor’s parting words were, “It’s time to stop and smell the roses!” Early on I dared to ask and was told that I had a life expectancy of about 15 years. A year later, I was told 10 years so I am not keen to ask again!
I have told many people of my diagnosis, at different times, and the positive comments about advances in research and potential new treatments are always appreciated. That possibility would be awesome but it really makes it hard to plan for a future which may only be a few years, or maybe much longer depending on the hope that there will be suitable medical advances. This has lots of emotional and financial implications and uncertainties. I like to be organized, and have a plan, so it’s become a whole new world of “ifs, buts and maybes”!
After 10 months on “watch and wait” I started Jakavi (Ruxolitinib). The aqueous pruritus itch stopped straight away and my spleen, which was enlarged and uncomfortable, reduced in size. The sweating and the fatigue lessened too although all symptoms have varied over time as has the dose.
I have found it more difficult than I expected to consider the future of my teaching career. I began teaching in 1983 and have worked at my current school over a period of more than 25 years. My wonderful boss and our staff have been very supportive and made the transition to part time work very positive for me. It’s amazing to belong to such a big thoughtful family, and it will be very hard to leave when the time comes.
Myelofibrosis is a rare cancer which most people have never heard of, but I do know of, through friends and family, four older males who were diagnosed with MF over the past 35 years. I am outnumbered in gender and age, and have to laugh when told I am young, at 56, to have PMF! I also have a close friend with another MPN, Essential Thrombocythaemia (ET) and we share an understanding of each other’s symptoms, medication and questions and both find the chance of this commonality a bit unnerving.
It was in my Dr Google phase, which continued for a few months, that I discovered the MPN Alliance Australia and was just in time to register for their inaugural Melbourne MPN Conference in April 2017. At the Conference, the specific Myelofibrosis session was very informative, as was having first hand access to such an amazing range of Australian and International specialists and their research. The “MPN Australia & New Zealand Support Community” Facebook group is also a wonderful place to ask questions and share with others in their journeys. It has been really lovely to have met some of the regulars in person too.
I feel armed with enough information now and comfortable in my research and knowledge I have of PMF. My focus is now on trying to be involved with a variety of interests and maintain my connection to friends and community when I have the energy. When I don’t, there’s always a new Netflix series to binge on! I love our garden, but now have to approach it “little by little” rather than the “stop when I drop” enthusiasm of the past! I have recently joined a book club with the irresistible name of “Reading between the wines”! I also belong to a local craft group which I’m hoping will inspire me to complete a couple of unfinished projects. I love mosaics too, and always have a project in mind! Together with a few friends, I have contributed some poppies for the “5000 Poppies Project” to commemorate the end of WW1 in Canberra this Remembrance Day. I am not at all sporty, but have gone to clinical Pilates for the past two and a half years. This has been great for strengthening and flexibility and I have continued, despite the fatigue, as it was already so embedded into by weekly schedule. I actually love it and the physio knows that the lying down exercises are my favourites!
My fabulous friends and wonderful family have been so supportive and I really appreciate their efforts to make my day to day life easier and to distract me with new adventures, long lunches, beautiful gardens and their generous company.
Cheers to enjoying each day and making lots of happy memories!