I've put together a short timeline covering the major events and developments during my illness so that anyone new to this blog can get a quick overview of the medical side of my experience so far.
2011
- February. Developed a severe headache which lasted for the best part of a week before I ended up being taken into hospital and given a brain scan. That showed that I had a case of acute hydrocephalus, a condition in which fluid around the brain cannot drain which results in increasing pressure on the brain itself, something which can be fatal if left untreated. Emergency surgery to relieve the pressure.
- March. During my stay in hospital the doctors ran numerous tests to try and identify the cause of the brain problem. A CT scan of my abdomen and chest revealed tumour like objects in my abdomen and liver. A biopsy was performed to see if these were malignant and, if so, what kind of tumours they were.
- April. The results of the biopsy showed that I had a rare cancer, Leiomyosarcoma (LMS for short). As the disease had already spread from my abdomen to my liver it was classified as stage IV, I was told that it was incurable and that the treatment I would receive could only slow down the progression of the cancer, not cure it. I started my first course of chemotherapy that month, a combination of gemcitabine and docetaxel.
- May to August. Completed six cycles of chemotherapy. The scans showed that the tumours had shrunk slightly.
- September to December. Treatment break. Katie and I were able to travel to India and Zambia on safari - wonderful!
- December. A genetic test showed that I had a mutation to my TP53 gene. Such mutations are associated with the carrier having a very high risk of cancer, sarcoma is one of the cancers particularly associated with this condition. People with TP53 mutations and high rates of familial cancer are classified as having Li-Fraumeni Syndrome.
2012
- January. CT scan showed that the tumours were growing again.
- February. Commenced my second line chemotherapy treatment, doxorubicin.
- April. After three cycles of doxorubicin a scan showed the cancer was not responding. Discontinued the doxorubicin and started my third type of chemotherapy, trabectedin.
- August. CT Scan shows that the tumours had shrunk somewhat in response to the new chemotherapy.
- September to December. Trabectedin continued to keep the tumours in check for the rest of the year.
2013
- January to November. Tumours remained largely stable thanks to the chemotherapy however towards the autumn the scans began to show some suspect signs of growth.
- December. A scan confirms that the tumours are growing once more. Discontinued the trabectedin after nineteen cycles.
2014
- January. I had what was at first thought to be a small stroke but was later identified as being more likely due to a lymphoma in my brain. Lymphoma is another relatively rare form of cancer. When I originally had hydrocephalus in 2011 the doctors initially thought that I must have a lymphoma. Hydrocephalus is a known complication that lymphoma can cause whereas LMS isn't associated with this. The medics are still unsure but some think that I may have had a lymphoma for the entire period since 2011. It would be very rare to have a lymphoma and LMS but this is much more likely for people with Li-Fraumeni syndrome than for the general population.
- February. Began taking metformin, the diabetes drug, as it is known to have some potential anti-cancer properties. Also began my fourth chemotherapy, dacarbazine.
- April. A scan showed the dacarbazine was not preventing continued growth of the cancer. Discontinued dacarbazine and began another new treatment, pazopanib. April was the roughest month I'd had since being in hospital back in 2011. I was very grateful for the support of my local hospice staff in helping me to get the cancer induced pain that I was suffering under control.
- June. The next scan showed that the pazopanib was not working and that the tumours were growing quickly. Pazopanib was the last commonly recognised treatment for LMS, the remaining options are all highly speculative. Discontinued pazopanib and began metronomic cyclophosphamide, my sixth line of treatment.
- August. Scans showed that the cancer was stable. Continued with the cyclophosphamide.
- September. Three small tumours surgically removed from the right side of my scalp. These were preventing me from sleeping on that side. A painless and easy procedure.
- October. Scan showed that the cancer is progressing once again. Stopped the cyclophosphamide and started on a combination of gemcitabine and docetaxel chemotherapy. This is my seventh line of treatment.
