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Where are they doing neuroendocrine cancer/lung research?

Posted by lenmon @lenmon, Mar 14, 2023

My husband just died Feb 19 of neuroendocrine cancer of the lung. We had an appointment scheduled at Mayo Clinic Rochester for Feb 20, but didn't make it. We knew from the start that it was not curable. By the time we found it, it was too large to operate. He did chemo and radiation and was doing well, but then had, as the doctor, said a "complication" with his immunotherapy drug (Tecentriq) after the second treatment. Up to that point, he was doing really well. I would like to send some of his memoriams to a place doing research specifically on neuroendocrine cancer of the lung. Would appreciate any information you could share. Thank you and God bless you all.

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phyllisden | @phyllisden | Mar 15, 2023

Lenmon, please accept my condolences in the loss of your husband. The fact that he appeared to be doing well and had an upcoming appointment at Mayo, I'm sure added another level of challenge in dealing with his loss.
I have not had personal experience with the Neuroendocrine Cancer Awareness Network, but did some research on line and was impressed with what I read. They provide many services, including monies for research for this rare type of cancer. (I just passed my 5 year survivorship date.) Because it is still considered fairly rare, I think it's a wonderful idea to designate money for research purposes.
Take care of yourself as you enter this new and challenging phase of your life without your husband.
Wishing you the best.

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1 reply
gneiss50 | @gneiss50 | Mar 16, 2023

Lenmon, I am sorry that you lost your husband to this terrible disease. We do need more research into why some tumors are so slow growing that they do little damage, yet others are monsters that can take our lives. You have encouraged me to make a donation to NET research, too.

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1 reply
lenmon | @lenmon | Mar 17, 2023
In reply to @gneiss50 "Lenmon, I am sorry that you lost your husband to this terrible disease. We do need..." + (show)
@gneiss50

Lenmon, I am sorry that you lost your husband to this terrible disease. We do need more research into why some tumors are so slow growing that they do little damage, yet others are monsters that can take our lives. You have encouraged me to make a donation to NET research, too.

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Thank you for your encouraging reply. Hopefully, whatever we can do, will help others avoid the heartache of losing someone they loved to this terrible cancer.

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lenmon | @lenmon | Mar 17, 2023
In reply to @phyllisden "Lenmon, please accept my condolences in the loss of your husband. The fact that he appeared..." + (show)
@phyllisden

Lenmon, please accept my condolences in the loss of your husband. The fact that he appeared to be doing well and had an upcoming appointment at Mayo, I'm sure added another level of challenge in dealing with his loss.
I have not had personal experience with the Neuroendocrine Cancer Awareness Network, but did some research on line and was impressed with what I read. They provide many services, including monies for research for this rare type of cancer. (I just passed my 5 year survivorship date.) Because it is still considered fairly rare, I think it's a wonderful idea to designate money for research purposes.
Take care of yourself as you enter this new and challenging phase of your life without your husband.
Wishing you the best.

Jump to this post

Thank you for your caring words. They mean a lot. And thank you for telling me about the Neuroendocrine Cancer Awareness Network. And for looking into them before you referred them. I'm so glad to hear that you have passed your 5-year survivorship date. That gives much needed hope to all those who are dealing with NETs in any form. I will say a prayer that your recovery continues and you are blessed with many good years ahead. Thank you again.

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1 reply
phyllisden | @phyllisden | Mar 17, 2023
In reply to @lenmon "Thank you for your caring words. They mean a lot. And thank you for telling me..." + (show)
@lenmon

Thank you for your caring words. They mean a lot. And thank you for telling me about the Neuroendocrine Cancer Awareness Network. And for looking into them before you referred them. I'm so glad to hear that you have passed your 5-year survivorship date. That gives much needed hope to all those who are dealing with NETs in any form. I will say a prayer that your recovery continues and you are blessed with many good years ahead. Thank you again.

Jump to this post

Lenmon, thank you for your kind thoughts and good wishes.

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