Friday, 14 March 2014

The bad news and the good news

Yesterday I had my regular consultation with my oncologist. The second cycle of dacarbazine chemotherapy has been going well with minimal side effects from the treatment, however in the last month I've noticed an increase in symptoms from the cancer. I've been experiencing abdominal discomfort most days with short periods of intense pain. When I have the pain I also have a strong feeling of nausea. The discomfort is made worse by walking and is limiting my mobility a little. The ten mile walk Katie and I did around four or five weeks ago is not something I could contemplate repeating at present. In addition to these symptoms I'm now sure that the several small tumours that I have on the surface of my skin are growing. I discussed the symptoms and the tumour growth with my oncologist and he agrees that it is likely that the dacarbazine is not working.
I have a CT scan of my abdomen and chest scheduled for the 26th March so we have agreed that I will go ahead and have the third cycle of dacarbazine next week and that we'll then review the scan results to determine if we need to switch treatments. We discussed what options there are available as a next step. My oncologist has recently presented my case at a meeting of the British Sarcoma Group, he was hoping to get some ideas from his colleagues who may have seen cases like mine before. Unfortunately there were few suggestions other than one idea that we try a chemotherapy regime normally used in ovarian cancer. This has a good record in tumours with no functioning TP53 gene which we suspect to be the case in my tumours too. This would be a speculative treatment as this chemotherapy regime is not used in Leiomyosarcoma and there is no trial based evidence to suggest it would work. I've identified another chemotherapy agent, eribulin, as an option as it has been shown to work in around 30% of LMS patients in a single, small trial.
Yesterday's consultation really brought home to Katie and I how close we are to running out of viable treatment options. There is always going to be another drug I could try but you have to question whether undergoing treatments for which there no good evidence of effectiveness is sensible, especially when those treatments can cause very serious side effects.
Following yesterday's rather bleak discussions we had some good news today when I saw my cardiologist. The purpose of the meeting was to discuss whether I can take pazopanib. This is a new treatment for sarcoma but has the results of a fairly large phase III trial supporting its use. Pazopanib was the preferred treatment option for me following the failure of trabectedin back in November but concerns about my blood pressure and heart condition meant that it was judged too risky for me. Well now the cardiologist has agreed that given the lack of other options I can go ahead with pazopanib. I'll need to have my heart function and blood pressure closely monitored and there will be an increased risk but this is something I'm willing to accept. I'm very relieved that this is now an option. The doctor I saw today was a registrar and she needs to discuss this with the consultant so the position could change but we're hopeful it won't.
So if the forthcoming scan shows the dacarbazine is not working the intention is that I will switch to pazopanib. It's a relief to have a clear way forward with a drug that has a fair chance of at least stabilising my disease.
Katie and I went to the Wildfowl and Wetland Trust reserve at Slimbridge the other day. For the last few years the WWT have been working to reintroduce the common crane into south west England. They've been hatching imported crane eggs at Slimbridge and then releasing the young birds on the Somerset Levels. The hope has been that once old enough the birds would breed on the Levels and establish a sustainable population. Cranes were once common in England but are now very scarce indeed with the last pair breeding in the south west over four hundred years ago. Some of the released birds are now reaching breeding age, amazingly last year a few of them showed up at Slimbridge and a pair tried to breed, unsuccessfully unfortunately. They are back again this year and were busy building a nest right in front of one of the hides. They are very large birds with a very distinctive look as you can see in the pictures below. As they are part of the reintroduction project they have radio trackers and are conspicuously ringed. Let's hope they successfully rear chicks this year.


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