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My Sister and Best Friend
Hello. My sister was recently diagnosed with a pancreatic neuroendocrine tumor that has metastasized to her liver. She went into the ER presenting with signs of pain in her right side. They did a CT scan and and found several lesions on her liver. The doctor that was on call at the time advised her to see her primary care physician and also wanted her to see a hematologist/oncologist. Since we have seen an oncologist who is just a general oncologist here in Indiana and we’ve also gone to IU’s cancer center and saw a G.I. oncologist there. They would like to start my sister on a regimen of Capecitabine and Temozolomide. Which I believe you all referred to that as Cap/Tem from what I’ve read so far. I am very close to my sister and I am scared because she is a grade 3 and a stage four. I am hoping that anyone who is taking this regimen may be able to shed some light on what to expect. She is scheduled to have a pet scan and is going to see another doctor from another cancer institute to see if they feel the same way these other doctors do because she’s been told two different things, some similar, and some not so similar. I would just like to learn as much as I can about Nets, because this is all very new to us. Thank you in advance to those who may be able to help with questions that I might have.
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@meandmysis
I was diagnosed with pancreatic cancer NETs, three 8cm tumors, that also have spread to my liver with innumerable lesions on 8/22/23. I have been on CAPTEM since then. All of my tumors have shrunk and my liver lesions have stabilized. I believe the Dr. recommending CAPTEM has NETs experience. Otherwise, the doctor would not have recommended it. What questions do you have?
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1 ReactionOops 8/22/22
How well are you doing on the Cap/Tem? Her oncologist said that it will make her very sick. She’s doing really well right now and she’s nervous about starting the treatment because although she was diagnosed with PNet that has metastasized to her liver, she just isn’t sure about this treatment.
What are her other options?
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1 ReactionThe Cap/Tem 2 weeks on then labs and I believe if her levels are good, then she’ll do two weeks again.
That sounds about right. Does she have any other treatment options?
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1 ReactionI am finishing up my 10th straight CAPTEM chemo cycle today. It has worked well for me. My next scans are the first week of July.
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1 ReactionI’m so glad it’s working for you. I’m praying that it does the same for my sister. Are you having any side effects?
Since she is recently diagnosed, they haven’t discussed any further treatment options. I know that he did tell us when we were there that if that didn’t work there were other options.
Initially yes, but two of my tumors were blocking my pancreas from functioning. Once they shrunk and were no longer in the way, my side effects were manageable. The worst thing now is just feeling beat up... like I had a fight with a bear and lost. I will feel much better on Tuesday.
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