Looking for info regarding esophageal cancer mets to lungs stories?

Posted by christine05 @christine05, Sep 24, 2023

I started with SCC Oesophageal Cancer Nov 22. Radiation & chemo Jan & Feb. Sadly I’ve been informed I have a couple of small tumours in my lungs. I feel broken.
Is it normal not to have a biopsy to confirm if the tumour is SCC as they’ve just assumed it’s linked to my oesophageal cancer which is now under control.
I start fortnightly chemo & immune therapy when I get back from uk Nov.
I was on a blind immune therapy trial and they have taken me off this now & say they are hoping I was on the placebo as otherwise it means my tumours probably won’t react to the immune therapy which could mean I only have 9 months instead of a couple of years.
Looking to hear others in a similar situation or any advice 🤍🤍🤍

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

Hi @christine05, I'm glad you made your way over here to the Esophageal Cancer support group. I'm tagging other members who have experience with stage 4 esophageal cancer to the lungs or other area and/or they have experience with immunotherapy, like @grac3honolulu @sjw6358 @jmp1514 @davidwrenn @socalkelly @naomicanada @jane59 @yinouye @lori57216.

Christine, do you know what type of immunotherapy and chemo you'll be getting?

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Oh my, you are so beautiful. Your helpfulness has just made me cry as we are so scared. I’m just being brave for our boy who is 13 as haven’t told him this news yet.
I have added a picture of my treatment 🤍

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@christine05

Oh my, you are so beautiful. Your helpfulness has just made me cry as we are so scared. I’m just being brave for our boy who is 13 as haven’t told him this news yet.
I have added a picture of my treatment 🤍

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@christine05, you may find some of this information helpful as you prepare to tell your young teen about your cancer. It will likely be hard and confusing for him. Thirteen is when a child searches for independence and separation. Interest in friends and self take priority. You may find these helpful:
– Helping Teenagers When a Parent Has Cancer https://www.cancercare.org/publications/51-helping_teenagers_when_a_parent_has_cancer
– Support for Teens When a Family Member Has Cancer https://www.cancer.gov/about-cancer/coping/caregiver-support/teens

Others are sharing in this discussion that you might wish to join:
– Family dynamics challenging when a parent has cancer: Want to connect https://connect.mayoclinic.org/discussion/group-focused-on-families-and-parent-with-cancer/

How are you doing today?

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@colleenyoung

Hi @christine05, I'm glad you made your way over here to the Esophageal Cancer support group. I'm tagging other members who have experience with stage 4 esophageal cancer to the lungs or other area and/or they have experience with immunotherapy, like @grac3honolulu @sjw6358 @jmp1514 @davidwrenn @socalkelly @naomicanada @jane59 @yinouye @lori57216.

Christine, do you know what type of immunotherapy and chemo you'll be getting?

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I will be on folfox6 & nivolamub fortunately

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@christine05

Oh my, you are so beautiful. Your helpfulness has just made me cry as we are so scared. I’m just being brave for our boy who is 13 as haven’t told him this news yet.
I have added a picture of my treatment 🤍

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Check into Camp Kesem for your 13 year old. It is a week long free camp for children with a parent with cancer. My 11 year old attended camp in Michigan. She can’t wait to meet up with her new friends next summer.
https://www.kesem.org/

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I’m so sorry about what you are facing. Telling my 6 year old and 11 year old about my husband’s cancer was the hardest thing I ever prepared to do. I actually wished the plane would go down to prevent me from having to do it.

It was hard & horrible. However, the actual discussion and things that have happened since were so much better than the visions I had in my mind. We got through it. They are stronger & more resilient than I thought.

I feel that I’ve learned a lot from a book written in 2019 by a Japanese immuno-oncologist and I recommend it to you.

My husband is on the same medications as you. He’s about to go into his 2nd cycle.

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@jmp1514

Check into Camp Kesem for your 13 year old. It is a week long free camp for children with a parent with cancer. My 11 year old attended camp in Michigan. She can’t wait to meet up with her new friends next summer.
https://www.kesem.org/

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We are in Australia 🤍

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@christine05

We are in Australia 🤍

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Sorry I missed that

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