Has cabozantinib (Cabometyx) stopped working for anyone?

Cabozantinib can work for a long time, but like many cancer treatments it may eventually lose effectiveness. The increase in low glucose alerts could be a sign that your insulinoma is becoming more active again, so it’s definitely worth discussing with your oncologist.

Yes, thanks, I sent notes to both my oncologist and endocrinologist and received replies from their staff. The upshot is that scans and tests look good, try more frequent meals, cornstarch before bed and so on. Dexamethasone was also mentioned.
One reason I was concerned was that I also had early symptoms in March 2025 but didn’t worry about it because the CT scans were so good. I ended up back in the hospital in April for surgery and later started cabometyx. (PET scan later showed increased activity which the CT scan missed).
Another concern is that the oncologist I’ve seen for the last two years is leaving for another hospital. I don’t know who will replace him or when I will be seeing them.

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

@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.

@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.

@zacharycat Is the Cabometyx still working for you? Who is your appointment with after your next PET scan? Thanks.

@tomrennie I think the Cabometyx is losing effectiveness. My scan yesterday showed "Since 10/23/2025 multiple new hepatic lesions with increased tracer activity, compatible with metastatic disease progression." So I have an appointment with a new doctor next Thursday and I will ask about other medications, clinical trials, maybe more PRRT is possible.

@zacharycat I am really sorry to hear that. Though it seems that you might have expected that from how you were feeling, actually hearing the news has to be tough? Is there any possibility that you can get to a net specialist? What state are you in?

@tomrennie From reading other patient histories I expected this after 12 months or so. The doctor I will see seems to have experience in blood cancers (leukemia, lymphoma, multiple myeloma) . I will see what he says and may ask to see a NET specialist, which we have in the area.
I am in Michigan.

@zacharycat Good luck with what the doctor says. Keep us posted please?