Thursday, 16 January 2014

Next steps

Katie and I met with my oncologist today to discuss my recent brain issue and to agree next steps for treating my Leiomyosarcoma (LMS). The meeting went very much as anticipated with the doctor largely confirming our current understanding of my condition and the best way forward.
In relation to my brain problem, the medical opinion remains that this was probably caused by a lymphoma although it is also possible that it resulted from an unidentified inflammatory condition. Unfortunately there is no straightforward way to differentiate between these two diagnoses. It seems that even a brain biopsy would have a relatively low chance of providing a conclusive answer and it doesn't make sense to have such a risky procedure when it is unlikely to give a definitive result. Both conditions are treated the same way - through steroids. I've been taking these for over a week now and will continue to do so for the immediate future. I have a further brain MRI scheduled at the end of January, this will hopefully show that the steroids have cleared the problem up, at least for now. We did learn today that the neuro-radiology specialists are sure that I didn't have a stroke so I think we can be confident that the steroids are the right treatment approach.
I've been getting some symptoms from the abdominal LMS tumours these last few weeks, a combination of constipation, transient abdominal pain and mild nausea. These symptoms are all quite mild at present but they have definitely become more noticeable in recent weeks. Also I can now physically feel the cancer as a hard round lump just below my navel on the right hand side of my body. There is something very disconcerting about this, it's so much more real than just seeing something on a grainy, grey scan on a computer screen. I was very keen then to get agreement today on a new treatment for my LMS. My high blood pressure and heart issues have made the choice of treatment quite straightforward by removing a couple of the possibilities that we'd been considering so I will be starting chemotherapy using a drug called dacarbazine. This drug is given once every three weeks via an infusion which I will receive as an outpatient. I hope to be starting in the next three weeks although I don't have a date as yet.
I'm also planning to start taking metformin as part of my treatment. Metformin is a drug that is used to treat type II diabetes but research also suggests that it may have anti-cancer properties. In particular it may help to boost the effectiveness of chemotherapy. Taking metformin is a speculative move as there is no strong scientific evidence relating metformin, LMS and dacarbazine. However, taking metformin is also relatively low risk so it seems to me worth a try. If the side effects of the drug are a problem I can simply stop taking it. My oncologist wants to look at metformin in a bit more detail before confirming he will prescribe it, but he does seem to understand my motivation and reasoning so I'm hopeful he'll agree. 
Generally speaking I've been feeling well so and Katie and I have taken the opportunity to spend time with friends and to enjoy the couple of days when the rain has abated and the sun has shone. We spent a very good morning at Slimbridge at the weekend, it's a beautiful place in the golden light of a sunny winter morning. We've also been trying to increase the amount of walking we're doing as I've been advised that this could be good for my blood pressure. We had a very pleasant and reasonably long walk along the Kennet and Avon Canal on Tuesday, again on a lovely, sunny day.
Yesterday we met up with some good friends of ours in Winchester. Winchester isn't a place I've visited before and I was keen to see the cathedral. After a very nice lunch we visited the cathedral in the late afternoon, after sunset. The interior of the church was very atmospheric in the low lighting although it was almost too dark to capture on camera without a tripod. Hopefully this shot gives an impression of what is a very impressive space.

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