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NETs growing despite 3 months of capecitabine and temozolomide
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.
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The tumor continued to grow despite the three rounds of oral cap/tem. That’s why they’ve gone to the folfox infusions.
I have yet to have a CT scan to see if the infusions have any impact on the tumors. Doctor says they want me on several months of infusions before they do a CT scan to see if it is working.
@djchambers
Do you know your dosage on CapTem? And what it was lowered to? The way my relative feels after 4 days off Capecitabine I doubt she will take again unless Dr can explain a lower dosage will decrease symptoms by x % or which ones. I hope these side effects are truly from the Capecitabine and not tumor growth ( PET scan mid Feb showed very low metabolic activity and feeling good up until end of last week toward end of cycle 1). Eating very little and still vomiting even with anti nausea meds.
@briana311
I don’t know my dosage cap/tem. They did not reduce the Capucine Tata at all. It was the temo they reduced.
Dr. Hobday at Mayo said he kept was likely cause of GI problems. Not temo.
Chemo dosages are calculated based on weight and other factors they told me.
@briana311 I was diagnosed in 8/22, grade 2 pancreatic NET. It has spread primarily to my liver and bones. My first treatment was the 13 cycles of CAPTEM. I started with 3 500mg pills of capecitabine in the morning and 2 at night. I don't recall the mg dosage of the temozolomide. About halfway through the 13 cycles, the doctor reduced the morning dosage to 2 500mg pills to help with side effects. I am still on the 2 pills in the morning and 2 at night. I get some mouth sores, dry skin anywhere on my body including my hands and feet, fatigue, body aches and pains, and occasional diarrhea. They are all a lot less than they used to be. The bad stomach pains, nausea and vomiting mostly stopped about halfway through taking CAPTEM. I live with neuropathy in my lower legs, feet, and hands. I lost over 100 pounds prior to and during the first few months of CAPTEM. Did I miss anything that you asked?
@briana311 How did the doctor appointment go?
@tomrennie
I last saw my local before infusion last week. He said I looked healthy enough to have 2nd round.
I guess I’ll next see him before 3rd round which I’ve delayed by a week because I’m having family come for visit. And also hope to give me more time to recover.
The neuropathy was so bad by end of infusion I could barely walk. They kept me awhile to be sure I wasn’t having strike or allergic reaction. But it was just really painful and sudden neuropathy in hands and feet.