NETs growing despite 3 months of capecitabine and temozolomide

Posted by djchambers @djchambers, Feb 4 10:37am

I've been on cap/temo for 3 months, with some very annoying side effects. Just got the results of CT scan. My two tumors have grown. My Louisville oncologist is suggesting standard chemo and having a port installed. He says without that I can expect 6 to 12 months before my tumors become terminal.
I have requested an appointment with Dr. Hobday at Mayo in Rochester whom I’ve seen before. I hope he will give me recommendation for best treatment. I have not heard back yet.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

djchambers | @djchambers | Feb 4 10:39am

The tumors are grade 3 but well differentiated.

markmark007 | @markmark007 | Feb 4 1:18pm

I am not a doctor ......
Have you had a PET scan?
Depending on results your team may consider PRRT

djchambers | @djchambers | Feb 4 2:13pm

Unfortunately, The last PET I had indicated my tumors would not be responsive to PRET.

Colleen Young, Connect Director | @colleenyoung | Feb 18 6:19pm

@djchambers, it is such hard news to hear that treatment has stopped working. I'm glad that you requested a second opinion from Mayo Clinic.

Have you added palliative care to your team of experts?

Nancy VanHauen | @vanhauen | Feb 19 8:44am

In reply to @djchambers "The tumors are grade 3 but well differentiated." + (show)

@djchambers
Would be so interested in what your next treatment recommendation will be from Dr. Hobday. Please share when you can, I also have grade 3 well differentiated and have done CapTem

djchambers | @djchambers | Feb 19 9:34am

In reply to @vanhauen "@djchambers Would be so interested in what your next treatment recommendation will be from Dr. Hobday...." + (show)

@vanhauen
Next step is fulfox. I’m supposed to have port installed and infusions every 2 weeks. Also possibly a drug to restrict blood supply to tumors.
Both Dr Hobday and my local oncologist agree on this approach.

They say it’s no better than 50/50 chance this will shrink tumors.

I’m a bit unhappy but ok.

Nancy VanHauen | @vanhauen | Feb 19 10:49am

Thanks for your reply 🙏hugs and prayers for you-You got this! I see many years of stability ahead! 🩷

zacharycat | @zacharycat | Feb 20 11:21am

In reply to @djchambers "@vanhauen Next step is fulfox. I’m supposed to have port installed and infusions every 2 weeks...." + (show)

@djchambers
I had both folfox and PRRT. Pretty good response to both but PRRT is much less time consuming and didn't make me sick. Folfox got worse every time from 3rd cycle on, though not intolerable. Was afraid of hair coming out or vomiting, but nothing like that happened.

Recent article on treatment sequencing for G3 NETs-
https://www.researchgate.net/publication/395618023_Sequencing_Choices_and_Real-World_Clinical_Management_in_Advanced_Grade_23_GEP-NET_Treatment_The_Emerging_Role_of_PRRT