1. < Neuroendocrine Tumors (NETs)

Gynecologic neuroendocrine metastasized to lungs: Need a specialist

Posted by nwilson03 @nwilson03, Jan 20, 2023

Help! Mom is 82. We’re at Orlando Health. Came in 2 weeks ago for pain in uterus through ER. They thought mom had tuberculosis at first then radiology said it was cancer. They admitted us and several days later said it’s squamous cell neuro endocrine stage 4. It’s in the uterus and pelvic bones and metastasized to lungs. I am next to moms bed awaiting chemo today. They placed a port and I’m scared to death. I pleaded with my sister to send mom to Mayo or md Anderson but moms pain has her unable to really walk too much. The dr is a hematology/ oncologist. I feel they just want to keep her her for the $ stays in house. Mom already signed the papers to receive chemo today. I’m just lost, it’s been a horrible week of trying to figure this all out.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 20, 2023
In reply to @nwilson03 "No Dr Dhafique basically said he agrees with the Dr at Orlando Health that not much..." + (show)
@nwilson03

No Dr Dhafique basically said he agrees with the Dr at Orlando Health that not much can help mom. She’s been basically abandoned by the drs. She is home with hospice and I feel so helpless watching her deteriorate daily with no treatment, nothing. I hear good things with immunotherapy and injections, keytruda so many thing yet mom just is home dying slowly a horrible death.

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Hello @nwilson03,

I am so sorry to hear of your mom's terminal condition. How difficult this must be for you!

You say, "mom just is home dying slowly a horrible death." Is hospice care keeping her comfortable? If not, you can certainly request more help with her pain or discomfort. Will you post an update and let me know how you are coping?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 20, 2023
In reply to @juandixon "I, experienced weight gain, depression, and muscle soreness. I was also lethargic, often lacking the energy..." + (show)
@juandixon

I, experienced weight gain, depression, and muscle soreness. I was also lethargic, often lacking the energy to do things I had once enjoyed. My endocrinologist was suspicious and ordered a urinalysis to check my Chromogranin A Serum level. Prior to my Whipple surgery, whereby my duodenum, part of my stomach and the head of my Pancreas and bile ducts were removed/resected, and my Chromogranin A Serum level was 960. They are now at 360 post surgery. I am very thankful for my medical team at Moffitt, but I am nervous about what's next. My most recent CAT scan w/contrast revealed a suspicious area on my liver. I am scheduled for a MRI to assess this area. I feel very well thus far. I've lost 40 lbs, which feels fantastic, but I have had digestive issues. I lost my colon in 2011 and have a 'J' Pouch, so my gastric issues were complex prior to the Whipple. I am presently on Pancreatic Enzymes and Simethicone and Lomotil.

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Hello @juandixon

It has been a few weeks since your last post and I was wondering how you are doing. Did the MRI give you any answers about the suspicious area on your liver? How are you feeling?

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queensmom | @queensmom | Feb 21, 2023

Can you please share what symptoms she has? Thanks

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Mentor
Miriam, Volunteer Mentor | @mir123 | Feb 21, 2023
In reply to @nwilson03 "No Dr Dhafique basically said he agrees with the Dr at Orlando Health that not much..." + (show)
@nwilson03

No Dr Dhafique basically said he agrees with the Dr at Orlando Health that not much can help mom. She’s been basically abandoned by the drs. She is home with hospice and I feel so helpless watching her deteriorate daily with no treatment, nothing. I hear good things with immunotherapy and injections, keytruda so many thing yet mom just is home dying slowly a horrible death.

Jump to this post

I am so sorry to hear this. I helped with a friend in hospice and my-mother-in-law as well. Hospice helped so much. We relied on the nurses, doctors, and wonderful chaplains. If it lines up with how you approach things, use the resources available. I was also a hospice volunteer and really connected to "my" patient. Sometimes hospice can provide massage, music, volunteer vigil, and more. And most importantly--pain control. Right now I'm facing a poor prognosis and very limited time but I must say that knowing I can go into hospice is a huge comfort. I wish you all the best.

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1 reply
nwilson03 | @nwilson03 | Feb 21, 2023
In reply to @mir123 "I am so sorry to hear this. I helped with a friend in hospice and my-mother-in-law..." + (show)
@mir123

I am so sorry to hear this. I helped with a friend in hospice and my-mother-in-law as well. Hospice helped so much. We relied on the nurses, doctors, and wonderful chaplains. If it lines up with how you approach things, use the resources available. I was also a hospice volunteer and really connected to "my" patient. Sometimes hospice can provide massage, music, volunteer vigil, and more. And most importantly--pain control. Right now I'm facing a poor prognosis and very limited time but I must say that knowing I can go into hospice is a huge comfort. I wish you all the best.

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Thank you. We are with hospice but I am very sad that we are not able to get alternate treatments or any treatments due to the fact moms tumor is in her uterus and too painful for her to get up. So she can’t sit up because she’s sitting on the tumor and no one will come to the house to do alternative treatments like IV vit C or ozone therapy. Mom wants to fight and I don’t have th heart to tell her we can’t find any inpatient hospitals for cancer or alternative with in patient or anywhere wanting to see her on a stretcher. If I could and knew how, I’d be hooking her up to a vit C infusion. Just isn’t right that if someone is in a postition that they are bed ridden due to their tumor they don’t deserve to get treatment.

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