No further treatment

After the news that the Cetuximab had stopped working and following our week away, I had my 15th CT scan in 2.5 years and some more bloods. The CT results were good, in that the tumours have clearly shrunk since my CT in January and there has been no further spread. This means the Cetuximab definitely worked and I am in better shape now than I was 3.5 months ago.

That said, we discussed the remaining options with my Oncologist who said there was very little to be gained from trying Avastin with Irinotecan, as there is only a 5-10% chance it would work at all and if it did work then we would probably only see a drop in CEA for a few weeks before it started rising again. There is also an increasing amount of evidence suggesting that once you start on Avastin it is not a good idea to stop (even if it doesn't seem to be working). Add to that the damage chemo does to your insides (especially when you have had as much as I have), the side effects plus all those extra hospital appointments and this option did not seem like a viable one to me. This means the only option left is "no further treatment."

So what can we expect now? It is not easy to predict as my cancer has not behaved typically this far, but it is most likely that I will trundle along for a period of time and then new symptoms will start popping up. As they pop up they will be investigated and treated accordingly. 

My bloods showed that my CEA is still heading upwards but it is no longer relevant for me to report on the number, or even know myself for that matter, since we have opted for no further treatment and we can expect things will continue to deteriorate.

The best we can hope for now is a few months of respite before new symptoms start appearing. My life expectancy is now in the order of 6-9 months. The time has come to ride this thing out. 

Will keep you posted......

The plateau that wasn't

Oh how quickly things can change. After my last blog update where I reported that my CEA was still trending nicely downwards, I had two further decreases (52.5 after 7 doses and 51.9 after 8 doses), but given how small the decreases were we decided we were probably seeing the start of a plateau.

At this stage I was feeling quite anxious as I had never experienced a plateau - in the past my CEA would either be going down (while on treatment) or up (when not on treatment). The key difference this time was that I was still going to be on treatment so I was hopeful that I might have a few more weeks (or months) of stability. I decided that if things remained stable (a little bit up and down would be ok) for say, another 3 or 4 weeks, then I might be able to trust it more. Deep down, however, I was expecting it to shoot straight back up.

A week later I experienced my first increase since being on Cetuximab (53.7) and a week after that it had jumped to 78.3. Bugger. No plateau. No point continuing with Cetuximab. My anxiety was justified.

So the question on everyone's lips is "what's next?" From what I understand there are only two options. I can try another expensive drug (Avastin) in combination with a chemo drug that I have had before (Irinotecan), accepting that the odds of it working are only in the order of 10% and dealing with a new range of side effects (and revisiting some old ones such as hair loss and neutropenia), or I can decide enough is enough and try to enjoy the time I have left without the endless hospital appointments and side effects. At this stage I am undecided.

Next week we are having a family trip down South for the second week of the school holidays and I am very much looking forward to catching up with friends and family and hopefully having some time out from the big decisions. Upon our return I will have a CT scan and a few more discussions with my Oncologists and go from there.

Until next time.......