Starting Xeloda!

Clinic appointment – I was all fired up to insist that the Oncologist start me on Xeloda and was ready with the information that Dr D had given me last week. So when I was finally called in for the appointment (as usual about 90 minutes later than the appointment time), I was disappointed to be told I wasn’t seeing Dr Adams but his Registrar which meant that I was being fobbed off this week, so I insisted on seeing Dr Adams and had to wait another 10 mins.

Of course it was a little different when actually faced with the Oncologist and he was throwing argument after argument at me. The Onc said that they don’t routinely use G-CSF (Neupogen or Granocyte, which are a haematopoietic growth factor that works by encouraging the bone marrow to produce more white blood cells). He also argued that when a G-CSF is given with chemo, it could cause the chemo to attack the white blood cells more vigorously and therefore deplete them altogether and leave me open to infection, from which I could die! He was adamant that it is not safe to give the chemo until the white blood cell count is seen to be rising. He has spoken with many consultants who consider it too dangerous to give a chemo after samarium when the white blood count is not showing signs of rising. Well, I couldn’t really argue with that, what do I know? (Interestingly, I have just spotted a trial on the cancerhelp.org.uk website, that is being run in Reading, which is running a test using G-CSF to try to prevent reduced blood cell counts after chemotherapy for breast cancer!)

I then went on to ask about Tumour Markers CA15-3 (specific to breast cancer) and why they are not routinely used. I suggested that maybe I should have had this test done on a regular basis when I was in remission between 2002 and 2005, especially as I had not had any bone scans during that period. As usual the same argument was used, that being, it is not good to be given unnecessary radioactive scans on a regular basis. The Onc went on to say that there is no good evidence to say that if the tumour marker goes up or down that it would indicate that something is on the move. The tumour marker number can go up and down for a variety of reasons.

Finally the Onc then suggests that I can begin the Chemo and gives me a prescription chart to take to the Pharmacy (I even have to pay a prescription charge for it!). He has also suggested that I change the weekly Herceptin to three weekly in line with the chemo regime and says that there isn’t any evidence to suggest that 3 weekly Herceptin is any different to weekly. So finally, after spending 2 hours in clinic I then have to wait another hour at the Pharmacy. I’m feeling like I have gone 10 rounds in a boxing ring. It’s as if it is a battle all the time with the Onc. I don’t think they like the fact that I am challenging what they know. I can’t disregard what I am being told in Germany and they don’t seem to appreciate that this is an uncomfortable place for me to be at the moment and I need to take any opportunity that comes my way.

After a further hour and a half spent in the chemo ward receiving the Herceptin, I’m finally allowed to go home. The anti-histamine infusion given before the Herceptin has really taken effect and I feel really dead on my feet, I need a couple of hours in bed to get over it. I’m beginning to dread Wednesday’s and I may as well right it off completely!!

Had a phone call from the Oncologist this evening saying that he was going to send me a blood form for a Tumour Marker test! I didn’t ask any questions. (Got results 28/12/05 - CA15-3 = 12, which is within the normal range)