I started taking Pazopanib as part of the STAR trial six years ago and this trial has just ended and the results should be published later this year. The study was looking at the potential benefits of building regular treatment breaks as opposed to simply taking the medication daily. I had scans every 12 weeks. If the tumours had shrunk by a certain percentage and remained stable over the course of two scans I would get a treatment break until another scan showed that the tumours had again grown by a certain percentage. This means that for the past six years I have had six months on medication followed by a three month treatment break except for one occasion when I had a six month treatment break.
The intent was to determine if having treatment breaks enabled the medication to remain effective for longer and also to see if it reduced the side effects.
Over the six months my side effects have reduced to the extent that I now rarely have any significant side effects. My taste does not alter, my feet and hands are not sensitive and I do not often get nauseous and if I do I'm not sure is is because of the medication.
Over the six years my tumour burden has increased and the tumours have gradually got larger but to date they have always reduced when I have returned to the medication but usually by a little bit less than they have grown. In addition to the original mets in my abdominal cavity I now have numerous small tumours in my lungs.
The trial ended whilst I was on a treatment break and during this break the tumours increased in size by about 30% and the largest tumour in my lung grew to about 16mm. At this point the oncologist was convinced that this meant that the medication was no longer working due to the growth rate. I have copies of all my scan reports and was convinced that when I checked them I would find that I had experienced similar growth in the past. He was also concerned by the size of the lung met but again I was aware that the newer the tumour the more it responded to the medication. The first time the lung tumours appeared during a treatment break they all disappeared again within three months of starting treatment.
My oncologist had discussed this with the research nurses prior to my attending and they believed that the best thing to do would be to take me off the Pazopanib and put me on another treatment. I was reluctant as I was not convinced that the medication had stopped working and I was aware that once I came off this treatment I would not be able to return to it and I persuaded them to continue with the treatment.
I have been a bit anxious over the past three months since disagreeing with my oncologist and was building myself up to a discussion about what treatment I should take next. I walked into my appointment yesterday and one of the first things my oncologist said to me was that I was right to argue to stay on the mediation as everything had shrunk again. I was really pleased that the treatment had worked but was elated at the fact that I had been right to stand my ground on the Pazopanib.
I am no longer on the trial and face the prospect of now taking the medication again daily until it no longer works. That does not worry my but I am disappointed that I will not be able to have lime again until my treatment stops working. (|Grapefruit, Pomegranate and St Johns Wort products are also to be avoided according to the manufacturers information but I rarely had them anyway). I am interested to see how the tumours respond without the breaks but I am also sure that if it was appropriate I could persuade the oncologist to let me have a break, even if it isn't for three months. I no longer have access to the marvellous research nurses and have yet to meet my new nursing team although I have talked to one of them on the phone. I am not currently able to e mail them but have to try and catch them near a phone if I want to pas on any information but I will work on them about this.
Wishing everyone all the best with their treatment whatever it may be.
Gragon xx
Hi Gragon, I am not a member of the kidney group, but I found your post so interesting, I did not want to leave it un unanswered.
It was very interesting to read about your experience of the Pazopanib trial, and I am so glad that your doctor has agreed to keep you on the medication. After all we know our bodies better than anyone.
I get the feeling that you feel that your safety blanket has been removed now that you do not have the trial team to support you, I hope you get the same support from your new nursing ream going forward.
I wish you all the very best.
