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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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I was diagnosed early December 2022. Had Ga Dotatate scan ( Jan 26)which showed a large tumor and I had surgery right away. I guess my tumor was too large to try Cap/Tem chemo to shrink it. I think this approached is for smaller tumors and metastases in order to shrink the tumor and consider surgery.
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2 ReactionsDo you know how big your tumor was? I am curious to what the tumor size threshold might be to go right to surgery? I am glad you are doing so well.
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1 ReactionIt technically is two chemo pills; capecitabine and temozolomide. You will take more than two of them unfortunately. I physically feel ok today. My body needs another day or two to recover. That's it. Usually, I would be great emotionally. But, this is a third month. I get scanned again on July 3. I meet with the oncologist on July 6. Is the CAPTEM still working? Did my tumors shrink more? Or didn't they? I only had a little nausea this time and didn't vomit at all again. Is that cause the chemo stopped working? The mental and emotional side of things are the hardest. You have to live with that unknown almost all of the time. That can be hard to manage.
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3 ReactionsAt the initial CT scan she had 10 hypodense lesions on her liver one measured 3.5 cm. She’s going to call tomorrow to find out if they scheduled her pet scan. I hope that they will have that scheduled when she calls tomorrow. She is waiting to have that done so that she can go see another oncologist at another hospital here.
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1 ReactionThat scan gets the ball rolling. It is critical. Please let me know, if you have any other questions. Getting the right doctors and treatment will make all of the difference.
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3 ReactionsGood morning. How are you feeling today?
I am feeling pretty well thank you. Came back from a 3 mile hike with my dog. It was hard, but we finished. My dog knows, if I am struggling. He will just sit. After a few minutes, we will start walking again. That simple task shows how it takes a team to help you help your sister. I am very lucky that my wife has been amazing. My dog has been amazing. My kids are my kids. I will stop that story there. I live in Arizona but am from the east coast. We went back for a wedding after last chemo cycle... see a trend? Sometimes, you have to plan around chemo cycles... a lot of family and friends asked, you were diagnosed with stage 4 pancreatic cancer about a year ago and yet you are still here? I would just say I am very fortunate. And I really am. My one niece officiated the wedding. It was her sister's wedding. When the wedding ceremony finished, she came over and asked me for a hug. She asked if she could lean on me. I said of course. When the night was over, I was exhausted. She came over, gave me a hug, and told me that it was time to lean on her. She had been leaning on me her entire life. It is time for me to lean on her. I tried to give you a snap shot of how my journey has gone. It is hard, but due to covid, it was hard to get diagnosed. Years longer than it could have. I am more than ok with that. Your sister is way ahead of where I was and still am. She has you to help. Let's get her the best team with the best care, so her transition to a NETs patient is as seemless as possible.
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2 Reactions@ Turkey - huge. 20×16×12 cm. It had grown over part of my stomach, vascularized. So I had most of my pancreas removed, spleen, gall bladder and some part of the stomach wall. ( gall bladder removal was to prevent additional surgery on it because Lanreotide damages the gall bladder). And I also have endometrial cancer ( not NET, totally unrelated, but discovered during Fluoro- deoxyglucose PET scan)- so hysterectomy was performed during pNET surgery. Almost 5 mo post surgery I feel well!
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1 ReactionOMG Pavlina. Wow. I am so happy that it is working for you. You have been through so much. Hopefully, the worst is behind you.
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2 ReactionsYeah, 9hrs surgery. I had most of my affairs in order going to the hospital :).
But so far so good - had good CT scan in June. A week after we drove 3 hrs to Canada and had a mini vacation. Now I bought tickets to Europe to go see my family in Bulgaria. Will see how I will do on the long (8.5 hr flight )plus 2 short ones. But I am not giving up to NET!🦓💜
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