I call this post shrinking and acceptance because both of these things have happened with my desmoid tumour recently! My tumour has been stable since the start of the year, not to mention continually shrinking, and this has helped me accept it as part of my body that will probably always be there, but now I feel confident that it can be controlled and I am under great care.
I had another scan last week that showed even more shrinkage which I’m so happy about. My dad is great with statistics and has pulled all my results together into a spreadsheet, and more recently a graph which shows the decrease in volume since it was at its worst in September 2016. My tumour is measured in 2 sections, because desmoids like to be a bit different and not follow a conventional shape, so the graph shows the smaller bit in blue and the larger section in red.
August – October 2016 – Doxorubicin and Dacarbazine.
November – January 2017 – Methotrexate and Vinblastine
January – Current – Notch inhibitor (gamma secretase).
I want to highlight that I was on 3 different treatments throughout this period, one that didn’t work and two that did. With rare disease there is such little data, that even if a drug is promising and has worked on a sample of desmoid patients, that’s no indication that you will respond to it. So keep your head up if treatment doesn’t work. Unfortunately, with rare disease its common to have to change up your routine a few times before finding something that works for you and that can be very challenging to process and stay positive.
I was quite disheartened when the first type of chemo didn’t stop my tumour from rapidly growing, when this was the best chemo option in terms of results, and the chemo that caused my hair to fall out! Luckily I then went on to a different combo which stopped the tumour growing and started it well on its way of shrinking. Now I am on a notch inhibitor (gamma secretase) which continues to shrink my tumour and doesn’t have as bad side effects as chemo.
I mentioned acceptance at the start of my post. I’ve now been on treatment for my desmoid tumour for over a year and it’s been quite a ride of emotions. When I first started seeing an oncologist I thought, fantastic, lets start on chemo and kill the whole tumour and get it out of me. My oncologist managed my expectations from the beginning saying that desmoids can in some cases completely disappear, but most likely they become small enough to go on a watch and wait approach. Even still, until a few months ago I still believed it would disappear completely and was frustrated that this was such a slow process.
Now that it is a smaller size, I feel less scared about it being inside me, and have come to terms that it would need a miracle bigger than a Christmas miracle to be completely free of my desmoid. I am happy for the moment because my current treatment doesn’t interfere with me living my life, and whilst I am reminded of my tumour everyday because of its location, I am less anxious about it and no longer constantly worry if it is growing, because I now know that it is very obvious when it gets bigger!