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New Developments

It’s been about a year since my first diagnosis and, unfortunately, I haven’t improved as much as I would have hoped. My physical and mental wellbeing have diminished with increased fevers, fatigue, loss of appetite leading to me losing about 5 kgs, loss of motivation and on top of that I now have permanent nerve damage in my fingers toes and knees (peripheral neuropathy) from the chemo. This means that I have lost some feeling in my toes and fingers and am a bit wobbly in my knees. These side effects are quite common with the type of chemo I had. Because of this and because it hasn’t been as effective as we’d hoped, we have decided (together with the oncologist) to stop with this type of chemotherapy. I am due to have a scan on Tuesday and then, on the 26th of April, we will decide on a new treatment plan.


We have two options; one is to move over to another type of chemo, called Folfiri, however, for my type of cancer this is unlikely to be very effective which means I may only have another year to live. The other option is to try another immunotherapy drug, Ipilimumab, which is presently undergoing clinical trials for my type of cancer. The preliminary results are looking very promising, so I am very keen to go down this path because if it works, it is a cure. This involves up to 4 infusions. Unfortunately, there are a few issues with this treatment; firstly, there is a much greater probability of developing an auto immune response which in extreme cases can be fatal. The second issue is the treatment is not funded and is very expensive.


I know this sounds all a bit doom and gloom, however, we are really looking forward to our daughter’s wedding in 10 days time and the excitement around that will inject some positivity and a good distraction for a while.

We are very grateful to you all for your continued prayers and support and want to say a special thank you to the anonymous person who sent us a beautiful bouquet of flowers this week.


Love to you all,

Robin

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