1. < Esophageal Cancer

Maintenance Chemotherapy for the rest of my life?

Posted by bryan18603 @bryan18603, Oct 22 8:38pm

I have stage 4 level 3 GEJ cancer that spread to one distance lymph node. I have gone through 12 cycles of chemotherapy and immunotherapy and the tumor has been resolved and the lymph node has been shrunk to normal. I am now being told that I will have to be on chemotherapy and immunotherapy for the rest of my life.
Has anyone else been told the same thing?

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jmreed1958 | @jmreed1958 | Oct 23 7:59am

I have heard of it but have not known anyone. It sounds like it might be something I would choose. Just hold strong. Things are going to be alright.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 30 3:42pm

@bryan18603, it is not uncommon for stage 4 cancer to be controlled (treated) with chemotherapy and/or other systemic therapies long term. My father was offered this for stage 4 colorectal cancer. It was explained to him that he had control over when to stop or that he could take chemo "vacations".

It is good news that the tumor and lymph nodes have responded well to treatment and have shrunk. How are the side effects of chemo/immunotherapy? Have you thought of talking about temporarily pausing treatment to have a break? Is this advisable in your situation? Might be worth talking to your oncologist about your options.

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bryan18603 | @bryan18603 | Oct 31 7:20am

Colleen,
Thank You for replying. The worst side effect currently is every time I eat something my tongue burns.
I have talked to the doctor about just going on immunotherapy or moving treatments to every 3 weeks instead of every other week. He has declined each and says the treatments are working and we have to stay with them. I have gone out of town and they stretched the treatment to 3 weeks. I’m at the point where I’m not sure what to do. I am enrolled in a stage 3 clinical trial but it is nothing special as I am just receiving standard of care. Any tips would be greatly appreciated.

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margski | @margski | Nov 4 9:41am

My husband was told that it was a possibility he would have to remain on treatment for the rest of his life. He has been off immunotherapy since Jan 2024. They are watching him closely as his September PET Scan showed a couple lymph nodes with possible signs of cancer but the blips were too small to tell. One node was in his right lung and the other behind his heart. His endoscopy biopsy samples taken last week were clear. We will be doing another PET scan in December or January. With the year anniversary of his last immunotherapy treatment fast approaching we are a little nervous. We are trying to live life to the fullest and counting our blessings every day - Power of prayer!

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