Connect
← Return to Has cabozantinib (Cabometyx) stopped working for anyone?
Discussion
Has cabozantinib (Cabometyx) stopped working for anyone?
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (20)Comment receiving replies
Hi Zach hope you are doing well now have you tried Everlimous ? I am getting care at Mayo with Dr. Thor not sure if he is your dr ? What type of surgery did you have ? What about the cabometyx is it working with you and making your blood sugar normal again? I am interested to know about this medication. Thanks
Replies to "Hi Zach hope you are doing well now have you tried Everlimous ? I am getting..."
@minaishak Hi and welcome to Mayo Connect. I get treated at Mayo in Phoenix, but I still know who Dr. Thor is. He has spoken at our monthly NETs support group meeting. How are you feeling? What are you diagnosed with to be needing help from Dr. Thor? What does your current treatment plan look like? Thanks.
Connect
@minaishak Hello. No I have not had Everolimus. Probably they will use Cabometyx until it stops working, which is usually about the time that I am at now (12-14 months).
I had a distal pancreatectomy with gallbladder and spleen removed. It was not at Mayo but my local hospital.
Blood sugar is usually normal until I do anything active for more than 30 minutes and then it drops quickly. It also drops early morning and early evening then spikes after eating. I feel dizzy often when walking but am almost used to it by now.
I have several doctors- my surgeon I no longer see and an endocrinologist who said he thought I would be dead by now. Currently no oncologist as the last two both left for other positions and they just found a replacement. I have an appointment with him in a couple weeks after another PET. From his resume I’m not even sure he’s an oncologist let alone a NET specialist.