Thursday, 5 December 2013

Looking hard for the 'bright side'

I had my latest consultation with my oncologist today. It was a meeting Katie and I were worried about as we were due to get the results of the CT scan that I had two weeks ago and we had some reasons to think that the scan might show that my cancer is progressing.
Around two months ago I realised that a small bump on the side of head was not a spot, as I'd thought, but something more concerning. At just about the same time I found a very small lump in my left arm pit, it felt about the size and shape of a grain of rice. My oncologist examined these at my last meeting with him four weeks ago. He felt that they could potentially be subcutaneous tumours. The appearance of tumours like these would indicate that my chemotherapy was no longer working. My oncologist proposed that we waited until we had the scan results before deciding on a course of action.
We have those results now and they show that the tumours in my abdomen have grown. They are described by the radiologist as 'large' although no measurements are given.  
Three lung metasteses are also mentioned in the radiology report. According to the radiologist two of these were visible on earlier scans and the third is new. The two existing lung tumours have grown although they are all relatively small at present, the largest being around 5mm across. On the brighter side the scan also showed that my liver tumours are stable, at least for now.
These findings confirm that some of the cells in my tumours have found a way to become resistant to the Trabectedin treatment I've been receiving. We agreed with my oncologist that we should discontinue Trabectedin and move on to another drug but that we should wait until after Christmas before doing this so that I can have a  few weeks break.
Prior to today we had a fairly clear idea that the next treatment I would have would be Pazopanib, however the last few weeks I've been suffering from high blood pressure and I also have some problems with my heart function following the heart failure issues earlier this year. This may mean that it is too risky for me to take Pazopanib as its side effects include high blood pressure and irregular heart beat. My oncologist is going to check with my cardiologist before making a decision. If Pazopanib is not an option there are some other ideas we can look at.
So it's not been the best of days, however looking hard for the 'bright side' I've come up with the following:
  • I can enjoy a few glasses of wine and the odd beer or two over Christmas;
  • the chemo that was schedule for Tuesday next week has been cancelled so I won't have the usual side effects to enjoy for the week or so after that;
  • I've had my PICC line removed, this is great as it had continued to cause skin irritation from time to time;
  • I've had 575 days of stable disease thanks to the Trabectedin. Whilst it would have been nice to have had even longer this is more than I could realistically  have hoped for when I started my first cycle back in May 2012. 
The situation I find myself in is far from where I'd like to be, I am however determined to make the best of it that I can.
And now to show that my sense of humour is still intact...most people who have been treated for cancer will have experienced problems with their digestive system. For me the two biggest issues I've had are wind and constipation. On the former I will just say that it is amazing what the human body is capable of and leave the rest to your imagination! Where constipation is concerned, laxatives are the way to go (sorry about the pun - I can hear the groans already)! Yesterday I saw the following poster in a pub:
They certainly knew how to name products in those days, 'Bombs-Away' is so much more descriptive than 'Laxido' or 'Senna'!


  1. Paul, I'm so sorry to hear this news. If there's anything I can do to help please let me know. If you want to discuss via email then please do get in touch.

    1. Many thanks for your kind words Pan, just to say I appreciate not only those but also all the work you continue to do - especially on Li-Fraumeni Syndrome. There are so few resources available to those with this condition and your site provides a lot of great information and a point of contact with others in a similar position. Your research in this area is also extremely impressive and exciting - I really hope it stimulates more interest across the research community. Paul.