I was diagnosed with a pnet metastasized to my liver and bones in 8/22. It was functioning, and it blocked two important veins in the area. So, I got very sick. Surgery was not an option. I was 56 at the time. I took CAPTEM chemo, capecitabine and temozolomide, for a year. They shrunk everything. For example, my 8x6cm pnet went to 4x2cm. It didn't block veins anymore. My pancreas and liver started to function properly. After 2 additional years of capecitabine, the cancer has been stable. I am the healthiest that I have been in years. Keep a positive attitude and outlook. It might not always be a cakewalk, but you can manage it. A lot of us here have. We have not only survived, but we now thrive.
Thank you for taking the time to respond.. I just found all of this out on Friday June 13th.. can you imagine. Went to the ER for something else.. was told '' by the way, you have a NET tumor" (FREAKED me out to say the least. I was to have surgery today for a small intestine ressection .. but they postponed it for 3.5 weeks.......... ANXIETY to say the least. I now know its a grade 1 but not the stage yet until after surgery. So worried about a return.
Hi @blm1024
Welcome! Glad you’re in the other side of surgery.
I have typical lung carcinoids and DIPNECH. Very slow growing. Discovered in 2008. Too many to remove. Had largest 2.6 cm destroyed with ablation. CT scan surveillance all along. Still stage 1. Octreotide injections to control respiratory symptoms.
I talked to a lady from another NETs site who had a typical lung NETs tumor the size of a tennis ball removed along with one lobe at 70 years old. I last talked to her when she was 80. She just had CT scans for 10 years. No recurrence or metastasis. No breathing issues. Doing great.
Lung NETs is much less likely to spread than GI NETs. I hope you find this encouraging and you’re one and done. 😄
Thank you for taking the time to respond.. I just found all of this out on Friday June 13th.. can you imagine. Went to the ER for something else.. was told '' by the way, you have a NET tumor" (FREAKED me out to say the least. I was to have surgery today for a small intestine ressection .. but they postponed it for 3.5 weeks.......... ANXIETY to say the least. I now know its a grade 1 but not the stage yet until after surgery. So worried about a return.
Thats a good question. I am trying to exercise more to help with this anxiety. In the past.. I gardened or went shopping, ( mom was diagnosed with C many years ago and lost her battle) but when its your turn............ its a WHOLE different animal to control.. Open to ideas ..
Thats a good question. I am trying to exercise more to help with this anxiety. In the past.. I gardened or went shopping, ( mom was diagnosed with C many years ago and lost her battle) but when its your turn............ its a WHOLE different animal to control.. Open to ideas ..
Sounds to me like you have a great start on ideas for helping with anxiety. I also like to do something physical like hiking with my dog. When I get angry, which does happen, I beat the crap out of a pillow. I needed to buy a foam pillow. It can take more of a pounding. When I wasn't mobile, I would listen to music or watch an inspirational movie or TV show. I also would do breathing exercises while visualizing somewhere peaceful like the beach. I do know the more anxious that I allowed myself to get, the worst I felt. So, I try my best to limit how anxious I get. Ever beat the heck out of a pillow?
Cant say that I have to a pillow that I remember ...lol.. went swimming today at a neighbors pool. Trying to get stronger b4 surgery. May I ask what type and stuff you are dealing with?
I do try to walk with my pooch when the weather allows it. SOOO HUMID here now..
Cant say that I have to a pillow that I remember ...lol.. went swimming today at a neighbors pool. Trying to get stronger b4 surgery. May I ask what type and stuff you are dealing with?
I do try to walk with my pooch when the weather allows it. SOOO HUMID here now..
I have a pancreatic neuroendocrine tumor that spread to my liver and bones. I have been on chemo for three years. Where is here? I live in the Arizona desert. We mostly have a "dry heat" other than our monsoon.
I have been to Charlotte in the summer. The humidity can be a bit overbearing. Yes, officially diagnosed on 8/22/22. I started chemo 10 days later and have been on it ever since. I was getting progressively sicker for a few years prior. Though terrifying, at least I finally knew what was making me sick. I didn't realize it at the time, but I almost didn't make it. The diagnosis and successful treatment were a life saver for me. Because of this, my perspective on things are a little different than some. I am just happy to be alive. I try not worry about what I can't control. Not an easy thing to do. I also genuinely feel very fortunate. So far, I am still waking up everyday. I have met folks on here that aren't so lucky. Keep plugging away but also try to keep things in perspective. It could be worse. Do you get to cool off in the pool again today?
Yes I will be in there today.! Its even hotter and more humid then yesterday.. 109 I think due to the humidity. I am trying to be positive, but its hard.. with very little speaking to the drs. I know surgery is coming up.. one tumor is a grade 1... the other I do not know what it is. Nor the stage of anything yet. I am praying that mine is early enough and with surgery that I do not have a return..Fingers crossed. Glad you are doing well.. stories like yours gives me hope.
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Thank you for taking the time to respond.. I just found all of this out on Friday June 13th.. can you imagine. Went to the ER for something else.. was told '' by the way, you have a NET tumor" (FREAKED me out to say the least. I was to have surgery today for a small intestine ressection .. but they postponed it for 3.5 weeks.......... ANXIETY to say the least. I now know its a grade 1 but not the stage yet until after surgery. So worried about a return.
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4 ReactionsThank you!!!💗
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1 ReactionHow do you typically manage anxiety?
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1 ReactionThats a good question. I am trying to exercise more to help with this anxiety. In the past.. I gardened or went shopping, ( mom was diagnosed with C many years ago and lost her battle) but when its your turn............ its a WHOLE different animal to control.. Open to ideas ..
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2 ReactionsSounds to me like you have a great start on ideas for helping with anxiety. I also like to do something physical like hiking with my dog. When I get angry, which does happen, I beat the crap out of a pillow. I needed to buy a foam pillow. It can take more of a pounding. When I wasn't mobile, I would listen to music or watch an inspirational movie or TV show. I also would do breathing exercises while visualizing somewhere peaceful like the beach. I do know the more anxious that I allowed myself to get, the worst I felt. So, I try my best to limit how anxious I get. Ever beat the heck out of a pillow?
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4 ReactionsCant say that I have to a pillow that I remember ...lol.. went swimming today at a neighbors pool. Trying to get stronger b4 surgery. May I ask what type and stuff you are dealing with?
I do try to walk with my pooch when the weather allows it. SOOO HUMID here now..
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1 ReactionI have a pancreatic neuroendocrine tumor that spread to my liver and bones. I have been on chemo for three years. Where is here? I live in the Arizona desert. We mostly have a "dry heat" other than our monsoon.
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2 ReactionsI live in NC... HUMID in the summer.. like BAD HUMID.. the rest of the year.. not so bad.
Have you been diagnosed for the 3 years now?
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1 ReactionI have been to Charlotte in the summer. The humidity can be a bit overbearing. Yes, officially diagnosed on 8/22/22. I started chemo 10 days later and have been on it ever since. I was getting progressively sicker for a few years prior. Though terrifying, at least I finally knew what was making me sick. I didn't realize it at the time, but I almost didn't make it. The diagnosis and successful treatment were a life saver for me. Because of this, my perspective on things are a little different than some. I am just happy to be alive. I try not worry about what I can't control. Not an easy thing to do. I also genuinely feel very fortunate. So far, I am still waking up everyday. I have met folks on here that aren't so lucky. Keep plugging away but also try to keep things in perspective. It could be worse. Do you get to cool off in the pool again today?
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Helpful -
Hug
2 ReactionsYes I will be in there today.! Its even hotter and more humid then yesterday.. 109 I think due to the humidity. I am trying to be positive, but its hard.. with very little speaking to the drs. I know surgery is coming up.. one tumor is a grade 1... the other I do not know what it is. Nor the stage of anything yet. I am praying that mine is early enough and with surgery that I do not have a return..Fingers crossed. Glad you are doing well.. stories like yours gives me hope.
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3 Reactions