Hi All,
Sorry I haven't been on in a while but I thought I would update you.
As most of you know I was on the STAR trial which looked at the most effective way for taking Pazopanib. The trial had been extended but it concluded in December. At the time I was on a three month treatment break. When I saw my oncologist in January he wanted me to come of the Pazopanib. I was surprised as I could not see why he would take me off a medication that I had not been taking for three months. He said that he believed the growth was more than he would expect during a break and one of the tumours in my lungs was bigger than it had ever been. Having had copies of all my scan reports I did not agree and stuck to my guns and he reluctantly agreed to my going back onto Pazopanib. I suspect that the fact the trial had ended was influencing his desire to change my treatment.
Twelve weeks later he congratulated my as all my tumours had shrunk on the Pazopanib. A further twelve weeks and I was advised that they had again all shrunk. The only one which hadn't was the largest on in my abdomen which retained the same external dimensions but showed signs of necrosis in the centre. The tumour in my lung had gone from 14mm to 6 mm to being too small to measure. I am now into my next twelve week cycle on Pazopanib. This is a trip into the unknown for me as previously I would have been on a three month treatment break so it will be interesting to see how my cancer responds to continuous treatment. It is six and a half years since #i started my treatment.
The results of the trial are yet to be published but I will let people know as soon as I see anything.
Another change is that during the trial I noticed that sleep deteriorated when I went back onto the meds. It had got to the stage where I could only manage about three hours at a time and was awake for at least two hours before I could get back to sleep again. Over about the past ten years I have developed mild hay fever in the early summer. Usually I took antihistamines for two or three days and it went and I stopped taking the tablets. This year the hay fever persisted so I kept on taking the cetirizine. After a week I suddenly realised that for the past three days I had slept a solid eight hours each nights. I have kept on taking the tablets and am continuing to sleep much better than I was. I think I must have been reacting to my treatment in some way and the cetrizine deals with the side effect.
I was still not sleeping well but this helped me to clarify that my diabetes was having an impact on my energy levels. As a result I talked to my diabetic nurse and I am moving onto insulin. I have yet to establish by baseline dose but already I am feeling much better with much more energy. I am feeling better than I have in a long time, at least a couple of years, and hope that it continues to improve.
Wishing you all the best,
Gragon xx
