1. < Neuroendocrine Tumors (NETs)

Diagnosed with Stage 4 pNET: What should I know?

Posted by talkativeinfl @talkativeinfl, May 7, 2023

It turns out that my husband has actually had this since at least 2014 when he had most of his pancreas removed as well as his spleen, due to a tumor. Developed another tumor in his transverse colon which was found in June after rapid weight loss prompted me to push him for a colonoscopy. When the tumor was removed they noticed abnormal spots on his abdominal wall. Fast forward to current day, he has had 2 different scans and it was determined that is has spread to his liver with "too numerous to count" tumors. So he has already had this for almost 9 yrs. He just turned 76 and I don't know what to expect or when. I noticed that he has had frequent memory issues where he was sharp as a tack just 6 or 7 months ago. Now I found out he has "severe Calcification" in 3 places in his heart. He is at a lets see which take me first place, how do I even begin to deal with that. Meanwhile he is worried about me not being able to live without his SS even though I am 22 yrs younger and am still fully employed. Any tips for this caregiver and her husband/patient?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

lastround | @lastround | Sep 20, 2023

Good morning All,
Just an update. I’m on Cap/Tem chemo and have neuropathy issues with hands and feet, nothing new but i started take a vitamin B Complex and i think it’s helping. My fingernails were crumbling at the ends and it has stopped sense i started using it. I’m not sure about the neuropathy, but i think it’s better. Still have neuropathy, but not getting worse. Can’t tell if it is slightly better or I’m getting use to it.
Give it a try, can’t hurt.

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tomatlanta | @tomatlanta | Sep 20, 2023

You may find this recent study helpful:
https://pubmed.ncbi.nlm.nih.gov/36260828/
My wife has a large grade 2 pancreatic NET with liver and bone metastases. After 4 courses of CapTem she has a partial response such that her liver lesions are reduced while the primary tumor is about the same. Side effects are tolerable although each round, predictably, has produced greater fatigue. We are hopeful that further rounds will have an impact on the tumor.

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kim1965 | @kim1965 | Sep 20, 2023
In reply to @retiredinkazoo "Thanks for the prompt reply kim1965. I appreciate the additional information and will definitely discuss with..." + (show)
@retiredinkazoo

Thanks for the prompt reply kim1965. I appreciate the additional information and will definitely discuss with my care team the possible use of CAP/TEM. I still did not understand what the term meant and interestingly the NIH Dictionary of Cancer Terms showed "no result" for "CAP/TEM." But with a bit more searching I now understand this is short for "capecitabine and temozolomide" and I was able to find a clinical study applying this therapy with good results to patients with NETs that had metastasized to the liver. Can you tell me, what does the term "Mtn. Function" mean? As you can tell I'm still not familiar with all the terminology related to NETs. Thanks again for your help!
Tom

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Absolutely, I apologize for not explaining it better. At our initial diagnosis of NETwe we’re terrified that she had cancer and might die. Our oncologist quickly calm us down, referred us to a great team at Froedert hospital. The best day for us is when the main surgeon was very confident that after chemo and surgery we would be able to kick this cancer down the road by decades, and it only be a maintenance item, needing to do whatever is the best choice to continue to keep it at a very low concentration, only in her liver presently. Very few patients get rid of NET’s but many are living a good life being able to do what they want and this forum will share many of those stories. I hope this answers your question. Please let us know what other questions you may have.

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1 reply
spinhead | @spinhead | Sep 20, 2023

You gave me hope, thank you. Every day I wake up I’m thankful. This is such a weird cancer and it’s hard to believe you can live a long time with it. From what little I’ve found it suggest a 5 year survival rate. Just scary

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 20, 2023
In reply to @talkativeinfl "Thankfully he doesn't seem to be in pain just loosing weight rapidly. I try to make..." + (show)
@talkativeinfl

Thankfully he doesn't seem to be in pain just loosing weight rapidly. I try to make meals to give him nutrition but that isn't enough and he won't drink ensure so cooking big meals that last him all week is my o ly option.

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Hello @talkativeinfl

As it has been a few months since you last posted, I was wondering how your husband is doing. Is he still losing weight? Any changes in his willingness to try treatments?

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retiredinkazoo | @retiredinkazoo | Sep 21, 2023
In reply to @kim1965 "Absolutely, I apologize for not explaining it better. At our initial diagnosis of NETwe we’re terrified..." + (show)
@kim1965

Absolutely, I apologize for not explaining it better. At our initial diagnosis of NETwe we’re terrified that she had cancer and might die. Our oncologist quickly calm us down, referred us to a great team at Froedert hospital. The best day for us is when the main surgeon was very confident that after chemo and surgery we would be able to kick this cancer down the road by decades, and it only be a maintenance item, needing to do whatever is the best choice to continue to keep it at a very low concentration, only in her liver presently. Very few patients get rid of NET’s but many are living a good life being able to do what they want and this forum will share many of those stories. I hope this answers your question. Please let us know what other questions you may have.

Jump to this post

Thanks so much to you and your wife for sharing her experience. I wish her and you all the best!
Kindest regards,
Tom

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