What treatments did you have for HER2-negative stomach cancer?

Posted by kayleahb @kayleahb, Feb 25 1:40pm

Anyone tested with stomach cancer tested HER2 negative and is on treatment? Please share your experience and what treatment are you on

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Was diagnosed with HER2 negative GEJ stage 4 in February 2024. After about 2 years of chemotherapy and immunotherapy I am currently NED.
I am currently on immunotherapy maintenance.

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@kayleahb, I hope you saw the helpful reply from @bryan18603. There are several targeted therapy options for HER2-negative gastric cancers.

What treatment is being recommended for you? How are you doing?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@kayleahb, I hope you saw the helpful reply from @bryan18603. There are several targeted therapy options for HER2-negative gastric cancers.

What treatment is being recommended for you? How are you doing?

Jump to this post

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

@kayleahb, I hope you saw the helpful reply from @bryan18603. There are several targeted therapy options for HER2-negative gastric cancers.

What treatment is being recommended for you? How are you doing?

Jump to this post

@colleenyoung Hi I started folfox on the 4th March 2026
I'm 8 days in so my side effects are not so bad

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Profile picture for bryan18603 @bryan18603

Was diagnosed with HER2 negative GEJ stage 4 in February 2024. After about 2 years of chemotherapy and immunotherapy I am currently NED.
I am currently on immunotherapy maintenance.

Jump to this post

@bryan18603 what is CEJ ? I have stage 3 with lymphnod invalment I'm on my first round of folfox .do you have any device for me

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GEJ is gastro esophageal juncture.
It’s where the esophagus meets the stomach. I had a 4cm tumor there and had spread to a lymph node in my neck so stage 4.
I believe with stage 3 you may be eligible for surgery. What is your treatment plan?

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Profile picture for bryan18603 @bryan18603

GEJ is gastro esophageal juncture.
It’s where the esophagus meets the stomach. I had a 4cm tumor there and had spread to a lymph node in my neck so stage 4.
I believe with stage 3 you may be eligible for surgery. What is your treatment plan?

Jump to this post

I started folfox for 4 section surgery and the cemo after

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My mother had stage 4 diffuse gastric cancer. She was on FOLFOX as a palliative type of chemo. When the side effects started getting worse, they usually wore off after a few days. Since her cancer was past the point of a cure, this chemo did extend her life and gave us more good months with her. This was in 2020.

My husband had stage 4a gastric adenosquamous carcinoma. In his case they did exploratory surgery and decided to treat him with curative intent beginning in 2021. He went through eight sessions of FLOT chemotherapy followed by six weeks of chemo radiation. All of this did have side effects that he found very difficult to tolerate as time went on. He managed to get through it. Then, he has surgical resection of his entire stomach (meaning they removed it). After that, he had many many episodes of recalcitrant strictures at his anastomosis (where they stitched together his esophagus to his small intestines). Many times they tried stretching it out and even two or three stents. It was very unpleasant and he was losing too much weight. They ended up doing a total revision surgery (meaning they cut the scar tissue out and did it over). After that, he had a feeding tube temporarily and got his weight up. I am happy to report that he is still living his new normal. Life without a stomach has its challenges but at least he has had no recurrence and has been back to living life for two or three years now.

My husband also had Lynch Syndrome, as determined by genetic tests, so he alerted his family. One of his brothers also had stomach cancer, discovered at stage 3. He lives in Venezuela so I will have to ask my husband if you want any specifics about his treatment. In his case, he got some kind of chemo and also had his stomach removed. The main difference, down there, was that they put in a plastic connector of some sort rather than stitching his esophagus right to his intestines. This was also in 2021. He is still living his new life without a stomach, too.

Please feel free to ask if you have any questions about any of these three. I hope something I have written may be helpful. None of them got any type of immunotherapy or targeted therapy. I believe all three were HER2 Negative. Treatments could have changed since 2021.

REPLY
Profile picture for nrocpop @nrocpop

My mother had stage 4 diffuse gastric cancer. She was on FOLFOX as a palliative type of chemo. When the side effects started getting worse, they usually wore off after a few days. Since her cancer was past the point of a cure, this chemo did extend her life and gave us more good months with her. This was in 2020.

My husband had stage 4a gastric adenosquamous carcinoma. In his case they did exploratory surgery and decided to treat him with curative intent beginning in 2021. He went through eight sessions of FLOT chemotherapy followed by six weeks of chemo radiation. All of this did have side effects that he found very difficult to tolerate as time went on. He managed to get through it. Then, he has surgical resection of his entire stomach (meaning they removed it). After that, he had many many episodes of recalcitrant strictures at his anastomosis (where they stitched together his esophagus to his small intestines). Many times they tried stretching it out and even two or three stents. It was very unpleasant and he was losing too much weight. They ended up doing a total revision surgery (meaning they cut the scar tissue out and did it over). After that, he had a feeding tube temporarily and got his weight up. I am happy to report that he is still living his new normal. Life without a stomach has its challenges but at least he has had no recurrence and has been back to living life for two or three years now.

My husband also had Lynch Syndrome, as determined by genetic tests, so he alerted his family. One of his brothers also had stomach cancer, discovered at stage 3. He lives in Venezuela so I will have to ask my husband if you want any specifics about his treatment. In his case, he got some kind of chemo and also had his stomach removed. The main difference, down there, was that they put in a plastic connector of some sort rather than stitching his esophagus right to his intestines. This was also in 2021. He is still living his new life without a stomach, too.

Please feel free to ask if you have any questions about any of these three. I hope something I have written may be helpful. None of them got any type of immunotherapy or targeted therapy. I believe all three were HER2 Negative. Treatments could have changed since 2021.

Jump to this post

@nrocpop thank you so much this gives me lost of hope

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