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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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Ok great. I believe that those options have worse side effects. I won't switch off CAPTEM. It works for me.
When you first started taking the cap/tem, was it hard on you? I just wondered how soon after she starts those if she will experience side effects. She is currently working a full-time job. She is waiting on them to schedule a pet scan, then shortly after that she will start the chemo treatment. Also, how do they administer both chemo drugs? Do you take on in the morning and the other one in the evening? I know I’m asking a lot of questions, but we are so new at all of this.
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1 ReactionNo worries on asking. We all start off not knowing anything. We do know that we have cancer and that is terrifying. And as cancer, its treatment is going to hurt. You will get sick. You will feel nauseous. But you learn what works for you to mimize those side effects. You have to be patient. That is why you want a great support team and medical team. They make a huge difference.
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1 ReactionThe drugs are oral. Each cycle is 14 days. You take three cap pills in the morning and 2 at night on days 1 - 14. On days 10 - 14, you will add 2 Tem pills at night.
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1 ReactionOh wow, I thought that she was only going to be taking two pills a day. I guess I should make sure they clarify that when we see them the next time. I know she’s expecting to be ill for a while. The hardest part for her, and all of us is that she looks so good right now, and we know that it’s expected to be ill while on chemo. I’m hoping that she will have minimal side effects. That more than anything that day treatment works.
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2 ReactionsI hear you. I want to remind you that CAPTEM is supposed to have the least amount of side effects for what we have. Every one has a different body. You really don't know until you start. You will also take Zofran a half hour before taking the temozolomide. It greatly helps with the nausea.
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1 ReactionI have pNET grade 2 stage 4 ( due to metastases in liver). I had distal pancreatectomy on Feb.1 and have been on Lanreotide injections since March. I just had a CT scan that did not show new growth and stable liver lesions. My Dr. said I will be on Lan for as long as it is working (seeing stable scans).
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2 Reactions@meandmysis
good morning. How are you feeling about things today?
Good morning. Still a little confused as to what they will end up doing for my sister. She is still waiting on them to call her to schedule her first pet scan. She is going to call them tomorrow if she doesn’t hear from them. I really appreciate all the information you’ve given me thus far. The part I’m confused about is the oncologist that is seeing her right now said that it would only be 2 chemo pills. I’m wondering if we misunderstood, but I’m going to be sure and ask. How are you feeling today?
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1 ReactionI’m glad the injections are working for you. That makes me happy and hopeful for my sister. When were you diagnosed? Did they ever try the Cap/Tem?
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