Hi. Does anyone have any experience with the side-effects of Cabozantinib?
I've been put on Cometriq to treat metastatic medullary thyroid cancer and originally I was prescribed 140mg per day but the side effects were too severe. I had a sore mouth that was so painful, it became a real struggle to eat, plus sores on my feet and hair turning white. My calcium also dropped dramatically, ending up with me becoming hypocalcemic and having an unexpected stay at the local hospital.
I stopped the cabozantinib for a few weeks over the Christmas period and everything largely went back to normal. My oncologist has now prescribed a lower dose (80mg per day) and I've been on that for a couple of weeks. The side effects have come back, but to a lesser extent so as long as they don't get worse, I'm hoping this dose will be manageable.
What I was hoping to find out is whether these side effects disappear after a while (and if so, roughly how long) or whether these will be something I just need to put up with from now on? I've not been able to get an answer to this online so if anyone has any experience, I'd be grateful.
Many thanks.
Hi Maestro and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read about the side effects you've suffered from while on Cabozantinib.
I noticed that your post hadn't had any replies yet so did a search in the group and found these previous threads which mention Cabozantinib for you to have a look through.While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
