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Anyone have anything to share on Neuroendoscopic SCLC? In hospice

Posted by guyjeff123 @guyjeff123, Dec 28, 2025

Up until recently I have been posting under Blood disorders, because I was overloaded with IV iron infusions by a careless doctor who gave me 13 IV iron infusions over a 9 month period. He didn't check my ferritin level until after the 13th infusion. I lost a kidney 3 months after the last infusion. My ferritin level was 2149ng/ml. My pancreas atrophied in March of 2025. I was afraid it was going to my heart next, which would have been fatal. However, before it had a chance to, my Pulmonary Specialist was watching a 5mm node in my right upper lung near the side of my lung. He ordered a CT scan in early October, because the node almost doubled in size in about a month, to 7.4mm by 9.6mm. He biopsied it in mid November and when the pathology came back, he told me a had High Grade very aggressive small cell lung cancer and there was no cure.I was told Chemo could prolong my life to 7-8 months, but I'd be sick after the very first chemo session. With CHF, 1 kidney that is stage 3B CKD, and a host of other comorbidities, I probably wouldn't survive the Chemo. With No treatment, I was given 2 to 4 months to live, but I'd have some quality of life. I needed to say goodbye to my 3 grandchildren, ages 6,7, and 12 years old. They didn't get to say goodbye to their NaNa, who died on 7/5/2023. I'm in Hospice at home now and it's been over a month since I was diagnosed with the lung cancer and it had already metastasized to my Liver. I don't know how bad the end will be, but Hospice says I won't suffer, they'll keep me comfortable. If anyone knows anything about the progression to death from this cancer, I'd love to hear from you.
God Bless you all.
Jeffrey Guy

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denzie | @denzie | Dec 31, 2025
In reply to @guyjeff123 "On November 25th my Pulmonologist diagnosed me with Neuro-Endoscopic Small Cell lung cancer. About a week..." + (show)
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On November 25th my Pulmonologist diagnosed me with Neuro-Endoscopic Small Cell lung cancer. About a week later they biopsied my liver, which had numerous large lesions, and determined that the same cancer in my right upper lobe, near the outer edge of my lung, was the same cancer that was in my liver. I was told that this cancer has usually metastasized, by the time it is diagnosed. I was given 7 to 8 months with chemotherapy, but I'd be sick from the very first Chemo and get more sick with the next ones. I'd basically have Zero quality of life, even if I survived the Chemo. I also have CHF, A-fib, only 1 kidney that is stage 3A CKD, and a host of other comorbidities. I was also told that without treatment, I'd only have 2 to 4 months to live, but there would be some time to say goodbye to my grandchildren, and to finish a book I've been writing for about a year. I chose no treatment and that was a month ago. If anyone knows how this plays out, until death, I'd be grateful for any answers.
Thank you
Jeffrey Guy

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Much is going to depend on what other organs become involved. As the body nears its end, the brain protects itself and conserves the energy for its use. It will eventually shut those organs down. The esophagus starts to lose its ability to push food to the stomach and swallowing becomes difficult. Forcing fluids can cause aspiration pneumonia. Make sure those supporting you know that. You also lose the desire to eat or drink.

With a life expectancy of less than six months it's time to bring on hospice. As mamajite said, they are very good at telling you what you can expect and when they see those changes happening. They have support for the whole family and will supply all the equipment you will need.

When my mom was diagnosed, we interviewed 3 hospice services. Only one representative looked my mom in the eye during the interview. That is the company we went with.

May your landing be gentle.

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lala56 | @lala56 | Jan 5 8:48am
In reply to @guyjeff123 "On November 25th my Pulmonologist diagnosed me with Neuro-Endoscopic Small Cell lung cancer. About a week..." + (show)
Profile picture for guyjeff123 @guyjeff123

On November 25th my Pulmonologist diagnosed me with Neuro-Endoscopic Small Cell lung cancer. About a week later they biopsied my liver, which had numerous large lesions, and determined that the same cancer in my right upper lobe, near the outer edge of my lung, was the same cancer that was in my liver. I was told that this cancer has usually metastasized, by the time it is diagnosed. I was given 7 to 8 months with chemotherapy, but I'd be sick from the very first Chemo and get more sick with the next ones. I'd basically have Zero quality of life, even if I survived the Chemo. I also have CHF, A-fib, only 1 kidney that is stage 3A CKD, and a host of other comorbidities. I was also told that without treatment, I'd only have 2 to 4 months to live, but there would be some time to say goodbye to my grandchildren, and to finish a book I've been writing for about a year. I chose no treatment and that was a month ago. If anyone knows how this plays out, until death, I'd be grateful for any answers.
Thank you
Jeffrey Guy

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Wishing you have a. best quality of time with loved ones. Sending prayers and hugs that you find comfort and peace. Trust in God.

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