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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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Wow. Good for you. Your trip to Bulgaria is a great goal. I would not have made it through the wedding if it wasn't a goal. My niece gave me some extra notice and motivation. When was the last time you were lucky enough to go back?
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1 ReactionI just read your post about the wedding and thought - that is a motivation! I could use that!
I was in Bulgaria last summer ( 3 trips!) before being diagnosed. My parents( in their 90s were sick with Covid, so I went in March; then had a trip to Portugal where my husband was on sabbatical and visited again in June; then went in August to my Mom's 90th BD. So when in November I felt sick and stressed and was losing weight I thought I was just tired... December 9th 2022 brought the diagnosis...
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1 ReactionNice. Sounds like you still kind of lived there? Haha. That is awesome. We missed family so much that we rented a place the week before the wedding, and invited people to visit. My niece loved the idea. My 87 year old dad spent a few days. We enjoyed it so much. I have a new appreciation for things. Cancer does have a positive or two.
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4 ReactionsI totally agree!🦓💜
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2 ReactionsThank you. I sure will and I appreciate it!
Kim is doing well, we just finished a camping trip to Mackinac Island. She joined me in riding bikes around the 8.2 mile island twice around. Tomorrow though she goes in for her 1st 90 day check up starting with a CAT , we meet with our cancer team later next week, pray for good results 🙏.
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3 ReactionsPraying for good results. My sister has her first pet scan tomorrow. 🙏🏼
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2 ReactionsI'm glad to read that Kim's energy level is good, @kim1965. Being able to keep up with such a long bike ride must have been wonderful for her. I'll look forward to hearing about her follow up appointment.