Cabozantinib 60mg

Hi Rosethorns, sorry I do not have any experience with cabozantinib, but just wanted to say how great it is that the treatment is working for you, and it is wonderful to hear that you are stable. I wonder if you did experience bad side effects, if they would reduce it back to the 40mg? xx

Hi Chelle,thank you for replying. I have since found out that the 60mg was a mistake and she is keeping me on the 40mg which are working. I have had bad sickness during the treatment, but I do think it’s worth it if it’s working.

Regards

Rose xx

Hi Rose

I'm sorry that you have to take Cabozantinib because I assume that puts us in the same siutation. In my case metastatic renal cancer.

Your post has also given me a spark of hope.

I'll explain.

When I was first diagnosed I was  srarted  on Avelumab and Axinitib which seemed to work at first  However a few months ago I was told my tumours are progressing and I was changed to cabozantinib.

Tye good news is that my latest CT scan, not only shows that most tumours haven't grown but two have halved in size!  Apparently on top of this the primary, in my right kidney, could not be detected.

I also had a PSMA scan which confirms this.  Additional good news since I possibly also have advanced prostate cancer.

The bad news :  I am having to have a break form the cabozantinib because it's making me so ill that if I were to continue as I was with no hope of ever feeling better, then I would consider it would be pointless continuing to live.

The drug has basically wrecked my gastroinitestinal system.  Cureently, I am still unable to eat very little.  The thought of eating is torture.

You have raised my hopes since I was being given 60mg right from the start.  Basically, my body just can't cope with it.

It's good to know that a lower dose can still work!

That is good Rose, I did wonder why they had thought to up the dose if you were stable. Sorry you are suffering from sickness on the treatment. I had a discussion today with my oncologist because I was hoping to stop one of the drugs I am because of the side effects, but she has convinced me to stay on it. Like you I am stable, so as awful as the side effects are, I am very grateful. It does get you down some days though doesn’t it. Xx 

Hi, yes we are both in same situation. I too have metastatic renal cell carcinoma and I too struggle with eating. When you are so sick afterwards it does put you off. I try to eat little and often so my stomach isn’t hit with a heavy meal. Maybe a smaller dosage would still work for you ? It’s an idea! 
what are your side effects? Sometimes they are worth putting up with.

good luck in treatment, whatever it may be. 
regards

Rose xx

Hi chelle, yes it does get me down too. And sometimes it’s hard to explain to my husband how I feel as he thinks that if he makes me eat it’s better for me. He dosnt understand that the thought of food on a fork just makes you feel sick. 
I do try to be positive as I think that is what’s got me this far already. 
I could easily have given up long ago. My thoughts are I can try it, if it works and I can do it great , if not I havnt lost anything. ( I even did archery a couple of months ago, even though I have a tumour in my shoulder. Just did it left handed lol .

keep chin up everyone

regards

Rose xx