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NETs growing despite 3 months of capecitabine and temozolomide
Neuroendocrine Tumors (NETs) | Last Active: 21 hours ago | Replies (37)Comment receiving replies
@tomrennie Can I ask you when you were diagnosed, what grade and where NET originated ( just re-read above and you stated pNET so started in Pancreas) and has it metastasized? You mentioned you were on CAPTEM for 13 rounds was this the first treatment? Also you state reduced dosage of capecitabine did you start at a higher level and Dr reduced due to side effects? What is your dosage? You are on 2.5 years what are side effects? My relative took 1 round of capecitabine 3000mg/day (after 12 rounds of Folfox) and side effects have been difficult — mouth sores, hand foot syndrome and rash on chest ( both of these have improved a little), abdominal cramps with nausea/vomiting and diarrhea, 8-9 lbs weight loss in 6 days, neuropathy in hands and feet (probably from Folfox although I don’t know if Capecitabine is making it worse since it keeps progressing vs getting better). Seeing Dr tomorrow, I doubt they will want to continue with this drug but maybe a lower dose would help or another regimen? What was the dosage when you were on CapTem (for both drugs)? I do not believe these are functional NETs so no real hormonal issues which a lot of the treatments work toward alleviating. Thank you
Replies to "@tomrennie Can I ask you when you were diagnosed, what grade and where NET originated (..."
@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?
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@briana311
I was diagnosed two years ago. The primary was near my small intestine. The biopsy showed it a lower grade, but after surgery, it was determined to be a grade 3 well differentiated. This fall I was diagnosed with a reoccurrence. as a tumor near where the original site was as well as one in the liver. A liver biopsy confirmed again that it’s grade 3 well-differentiated.
I did three rounds of capicitaben and temlizide. I had a lot of G.I. symptoms, severe pain in my esophagus and colon spasms. Because of low blood counts, low platelets, first cycle low white blood count second cycle they reduced the democide in those cycles.
Now I’m on second cycle of fol fox. The neuropathy in my hands has been my primary complaint, although I have pain in my joints in particularly my jaw and thumbs.
I’ve just discovered from a bone scan that I have osteopenia. Previously, I had excellent bone health.