Mixed results

Hi Ian436,

 It would all depend on you if you think your consultant is working in your best interests  or do you not have confidence in them.

I actually had my treatment changed after five months from Nivolumab to Cabozantinib as the treatment was shrinking my lungs cancer, but not my kidney cancer this was still growing.

 I wish you luck with your decision 

How are you doing on Cabozantinib, that was mentioned as an alternative, as was Nivolumab.  I would rather they tell me what to take than kind of leaving it up to me.

Not to bad at all, I have been on this one for the last 6 months now, I will be having another 6 months taken me to the end of this year, I am actually waiting for my scan results this Thursday, first scan showed all my tumours were shrinking so fingers crossed this one will be the same.

As for side affects I have been very lucky with both treatments, I have very dry skin, dry mouth, loss of taste and not too much hair loss, the only thing is my eye brows not keen on that I also have a bit of tiredness, but the hospital do give me cream and mouth wash which is a great help.

My hair is pure white, but it was loss of taste, lower energy and diarrhoea which is the worst for me on pazopanib. I never felt sick or had hand and foot syndrome, and never had a sore mouth either.

I know what you mean, I did have very dark brown hair, now it has lost some of its pigment and volume, the thing is I am not eating meat now as it tastes horrible and I find I cannot eat spicy food Iike I used too 

Sandra were you on Nivolumab as a first line of treatment and the changed to Cabo. i had my kidney removed in 2015 and thought that was me sorted. i couldnt believe it when they told me it had returned in my pancreas in 2020. I was told i was a good risk and advised to start with pazopanib, even though Tivozanib was the newest treatment. I cant take Tivo now as ive already taken paz. Im just about to start taking treatment again, and hope this slight increase was just a blip and it will keep working.

Hi Ian436,

Sorry for late reply you will get it tomorrow, yes the Nivo was my first treatment, I also had my left kidney and spleen out in 2019, my problem was that I had cancer in both my kidneys, after my op they said I could have the bottom of my right kidney removed by bench work, so as I was recovering they were going to arrange this for me, but in the mean time I had to have another scan so the new hospital could do this for me, but when they got  the next results they informed me that the cancer had spread to my lungs and adrenal gland, so they did say I had months rather than years, my consultant put me forward for the immune therapy which is when I went onto the novo and now Cabo, sorry for the essay that is my case in a nut shell.

Sandy

Hopefully the Cabo will work and there will be more shrinkage at your next scan. X