Anyone on cabozantinib after Y90

@nana120 I heard it mentioned on here a few times, but I know nothing about it. I hope someone on it responds, so we can learn something.

@nana120: I am sorry you are experiencing new tumors. Are you seeing a NET Oncologist with expertise in your NET location? Asking for their opinion on specific effective treatment options may be beneficial. As I read your post I wanted to ask if you would consider PRRT Lutathera treatment.
June 2024 I chose this option for my tumor progression in my small intestine/stomach primary, as well as progression in the liver metastases. I am overjoyed with the resolution I continue to see in my tumor sizes on Evoist MRIs every 3months. Many of the smaller liver tumors are gone!
The PRRT procedures consisted of 4 infusion sessions (every 2months) over a 6 mo time (June, August, October & December 2024). This treatment consists of iv infusion of amino acids (prevent all symptoms) and a 15 minute iv of the Lutathera (which targeted my Samatostatin receptive tumor cells and killed the cells). The only side effects my body felt was fatigue and an occasional achy area (I imagined my tumor cells blowing up!).
I wanted to share my experience in hopes it may offer you a non-invasive effective treatment. You decide what you need for your body!
My best thoughts are yours while you make this difficult decision… Bette

Hi, yes my oncologist is a NET specialist at Baylor Sammons in Dallas. The Y90 was determined after 8 mos of lanreotide and 3 mos of Temozolomide and the tumor continued to grow. He told me previously I don’t do well with big pharma, so I have concerns about cabozantinib just because it is the newest drug.

I'm sorry I (or rather my husbsnd who is the patient) don't have personal experience with cabozantinib but I had a question. Typically with nets they combine Temozolomide with capcetibine, a regimen known as captem. Did you also take capcetibine? The 2 drugs together are shown to be pretty effective for nets and this regimen has been approved and in use longer than cabozantinib.

I didn’t take them together. As I said my NET doc takes my intro into pharma by baby steps due to my history.

Since 2 more tumors showed up after my Y90, has anyone experienced anything similar and could the Y90 have caused it? My NET specialist just reminds me that I have metastatic disease and always will.

Everybody responds to treatments differently. My husband had a completely different result after his y90 which killed almost all of his liver tumors. And he had a 50% tumor burden. What remained stayed stable for several years. There are other liver directed therapies available, including the recently approved histotripsy that your doctor can investigate. Best of luck to you!

I don't understand your big pharma references. Can you please elaborate? Thanks

He referenced any pharmaceuticals as “big pharma” as opposed to other treatments.

Started cabozantinib (40 mg) in early June, seven months after Lutathera PRRT. Definitely has some side effects - in my case dizziness, slight nausea, lip and tongue soreness and food tasting different, somewhat metallic. Shortness of breath that seems to come and go. I think the quit rate of cabozantinib due to adverse effects is about 15%, as some patients have it much worse.