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Anyone have anything to share on Neuroendoscopic SCLC? In hospice
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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Jeffery, I have no words of wisdom for you. I can only imagine and feel helpless. Bless you for sharing your story. May you find the comfort and peace that you deserve. Your memory will live on in your grandchildren.
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3 Reactions@wklapp, Thank you for responding. I wasn't really looking for any words of wisdom, but I believe, as you said, that my memory will live on in my grandchildren. I have been the main stable influence on them in a house where very little stability exists. Their mother, J, does the best she can with what she has to work with. I love her deeply for that. She's their safe place. Thanks again for your response. God bless you.
@guyjeff123
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4 ReactionsOn 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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5 Reactions@guyjeff123 Hello Jeffrey,
It sounds like you have had a lot of medical trauma lately. I am so sorry to hear that there seems to be little that can be done for your lung cancer and the metastasis. Have you sought a second opinion at a research center dedicated to cancer?
In any case, I wish you well as you take this journey with hospice by your side. I appreciate the thoughtfulness you express for your grandchildren and their mother. I would encourage you to continue to post as you can. It often helps to express thoughts and feelings. Connect is a place where you can do that safely. You might also consider posting your thoughts in a Connect discussion group, "Hope in the Face of Adversity." Here is the link, https://connect.mayoclinic.org/discussion/hope-in-the-face-of-adversity/
I look forward to hearing from you again.
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5 Reactions@guyjeff123 I thought about an idea that was given to me when I worked as an oncology (cancer) nurse. You could write a letter to each child separately, telling them how much you loved them and how great they were in your life. Just a nice letter as though you were just down the street. Give them to a family member to put in an envelope and mail them to each child (after your death) on their birthday! Maybe I’ll do that for my grandchildren!
I wish for you a peaceful, loving journey.
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4 Reactions@becsbuddy A wonderful idea!
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2 ReactionsHello Jeff @guyjeff123, Many of us know that we'll face this conversation with our doctors at some point, and we all know it won't be easy.
I've found this TED talk to be helpful, and even has a touch of humor: "What happens as we die?" from Kathryn Mannix
Wishing you clear thoughts in order to finish your book. One of my favorites is When Breath Becomes Air, Paul Kalanithi. The book was left unfinished, just like his life was left unfinished due to lung cancer. It happens. Your work up to this point will still be treasured even if it doesn't get wrapped up as you anticipate. Life is messy and sometimes things are left unfinished.
From your posts, it sounds like you have found some sense of peace during this time. I'm sure it's not easy, but you sound determined to make the best of the time that you have. That's in inspiration for the rest of us. I'm glad that you shared. Hug those grandkids, take care of yourself.
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4 Reactions@becsbuddy Thanks. That's a great idea. I believe I'll take you up on it.
Jeffrey
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4 ReactionsHi Jeff,
I'm so sorry to hear of your cancer and other issues! That must be so hard for you to deal with! My husband had Stage 4 lung cancer. He died in 2024. He reacted badly to Chemotherapy and Keytruda. He was very ill each time he had treatments. Finally he just gave up having any kind of treatments at all because they made him feel so awful! What he did was to eat healthy and for him healthy was good quality red meat, fresh fruits and vegetables, and not eating prepared frozen dinners or anything that had preservatives in it. Also he drank a lot of water.
The other thing he did was to pray. We both prayed together. My husband was expected to only live 5 years. He lived 14 years! I was so glad we had that time together!
Give your problems all up to God. He decides when you will live or die. God will be there for you and help you through this difficult time. Just talk to him like he's your best friend and he is! God helped me and my husband immensely.
As much as I miss my husband, I know that he is up in Heaven and we'll be together eventually in God's time. You will also be in Heaven when you die with all of your loved ones who have gone before you. Remember, Jesus said, "I go to prepare a place for you." And that's exactly what he did.
I will say a prayer for you.
I wish you the best.
PML
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4 Reactionshi @guyjeff123 - for my family members that have been in a similar situation, hospice care was extremely helpful. those folks are very equipped with answers about how the dying process works. and they can do a lot to keep you comfortable and support your loved ones. all of our journeys come to an end one day. wishing you peace, comfort and the energy to do what's important to you.
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