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Not What We Hoped For

update by Robin



Ten days ago I had my appointment with the oncologist. I was very hopeful and gladly exclaimed to my oncologist that I was feeling great. His response was: “you always say that!”, immediately following this with “the scan results are not looking good”. We then looked at the scans which clearly indicated that progression had continued. Whether real or pseudo is unknown.


Basically, there are 3 possibilities of what’s going on:


1. The Keytruda treatment is working and we are just seeing an increase in flare (pseudo-progression).

2. The Keytruda is partially working but can’t overcome the growth rate of the cancer.

3. The Keytruda is not working at all.


The big concern now is that if the cancer is growing, I could have a bowel blockage and/or liver failure. So we decided we couldn’t take the risk and I will be moving onto chemotherapy.


As we’ve said earlier, the long-term prognosis for chemo is not great, so we are going to continue with the immunotherapy as well for the potential longer term benefits. Dual treatments is all a bit experimental but it is considered safe. As I am currently feeling good and my blood results are looking good, we are still hopeful the Keytruda will be effective and don’t want to give up on it at this stage. The oncologist also feels that I will be able to handle the dual treatment as I am young and fit and I haven’t had any serious side effects from the Keytruda. One of the theories is that the chemotherapy not only destroys cancer cells but also “unmasks” the tumours so that the immunotherapy can then work more effectively as my immune system will recognise them better.


Moving onto chemotherapy is a big thing to organise and get our heads around, hence the delay of this blog. Everything is being organised very quickly and last Thursday I had surgery to insert a portacath, which is a port implanted under skin in my chest, with a catheter that goes directly into the main blood vessel going into the heart. This is used to administer the infusion and a lot safer and more practical for chemo than IV lines.


Next Tuesday my chemotherapy/immunotherapy treatments begin. The chemotherapy is on a 2 weekly cycle and will continue for 3 or 4 months. This involves going to the clinic for 5 hours every other week for the infusion, followed by a take home pump plugged in to give me further infusion over the next 48 hours. All this is like opening a big box of unknowns, as I have no idea of how I will respond and whether I will develop any of the long list of potential side effects.


For the last 5 months or so, I have been staring death in the face and it’s been constantly mocking me. I’ve had to fight this by trying to remain positive and one of the things that helps is all the support I receive. Coming back from the oncologist last week, I could hear this little voice in my head saying: “haha, fooled you”. So the last week has been a low point as I’ve had to face up to the new reality but it’s time to go into second gear and fight this head on, physically and mentally. I’m hopeful and looking forward to the day when I can punch that mocking voice in the face!


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