Esophageal cancer treatment: Anyone have good experiences to share?

Posted by earnest @earnest, May 28, 2024

Hello troops. Does anyone have any good news about their treatments? All I've been reading are horror stories. Not very encouraging at all. I'm on my second week of radiation and chemo, and the first chemo didn't go well. Not meaning to add to the horror stories, but it made my stomach ache really bad. They stopped and gave me steroids, I think. Now I'm hearing these stories about leaking chemo causing pain, makes me apprehensive. So if anyone has had a GOOD experience, PLEASE share it!

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

It’s not a hospital but a treatment center in Mountain Lakes, NJ
“ Oncology and Hematology Specialists “ P.A.” Oncologists, Bloodwork Labs, Infusion center. Tests are done at hospital or imaging centers.
I have great confidence in my Oncologist

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Profile picture for relicmeister @rselicmeister

Consult with my oncologist yesterday. Low platelet count from oxaliplaten in folfox has him concerned but will stick with it at 50%. I thought after my 6th round next week there would be a pause, but he surprised me by saying they will continue chemo for a total of 12 rounds before any pause. but scheduled a PET scan for Sept. 16. But he said that between the folfox and two immuno- drugs my cancer markers are reduced as are my symptoms, indicating I’m showing good treatment response. In fact last night I easily ate half of a meatloaf/ mashed potato TV dinner ( bc readily available) and half of a chocolate milk shake- pretty much my first real meal in 10+ weeks. I can eat even more but I’m being cautious, but it seems like my esophagus is no where near as obstructive as it was even two weeks ago, and improving every day. I do get bouts of nighttime nausea and suffer from fatigue and weakness, which is just from all the chemo, but nonetheless I’m working 4+ hours most days now and productive at my job that has begun paying me for full 40 hours even though I’m working under 20 hours/week. I am however getting the job done and it’s a critical role that I have in our company.
I’m grateful to God for the progress I’ve made and I’m extremely optimistic in spite of the seriousness of the “incurable” metastatic stage4 esophageal cancer that I have. I put incurable in parentheses because it’s God that decides my future and with God, ALL things are possible.
So this is my positive experience to share with all of you today.

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What cancer center are you working with?

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Profile picture for relicmeister @rselicmeister

Consult with my oncologist yesterday. Low platelet count from oxaliplaten in folfox has him concerned but will stick with it at 50%. I thought after my 6th round next week there would be a pause, but he surprised me by saying they will continue chemo for a total of 12 rounds before any pause. but scheduled a PET scan for Sept. 16. But he said that between the folfox and two immuno- drugs my cancer markers are reduced as are my symptoms, indicating I’m showing good treatment response. In fact last night I easily ate half of a meatloaf/ mashed potato TV dinner ( bc readily available) and half of a chocolate milk shake- pretty much my first real meal in 10+ weeks. I can eat even more but I’m being cautious, but it seems like my esophagus is no where near as obstructive as it was even two weeks ago, and improving every day. I do get bouts of nighttime nausea and suffer from fatigue and weakness, which is just from all the chemo, but nonetheless I’m working 4+ hours most days now and productive at my job that has begun paying me for full 40 hours even though I’m working under 20 hours/week. I am however getting the job done and it’s a critical role that I have in our company.
I’m grateful to God for the progress I’ve made and I’m extremely optimistic in spite of the seriousness of the “incurable” metastatic stage4 esophageal cancer that I have. I put incurable in parentheses because it’s God that decides my future and with God, ALL things are possible.
So this is my positive experience to share with all of you today.

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Relicmaster, you are an inspiration. couldn't agree more about "incurable". You are a beast even working 4 hours a day. Keep up the good work and positive attitude. Prayers for you my friend.

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Consult with my oncologist yesterday. Low platelet count from oxaliplaten in folfox has him concerned but will stick with it at 50%. I thought after my 6th round next week there would be a pause, but he surprised me by saying they will continue chemo for a total of 12 rounds before any pause. but scheduled a PET scan for Sept. 16. But he said that between the folfox and two immuno- drugs my cancer markers are reduced as are my symptoms, indicating I’m showing good treatment response. In fact last night I easily ate half of a meatloaf/ mashed potato TV dinner ( bc readily available) and half of a chocolate milk shake- pretty much my first real meal in 10+ weeks. I can eat even more but I’m being cautious, but it seems like my esophagus is no where near as obstructive as it was even two weeks ago, and improving every day. I do get bouts of nighttime nausea and suffer from fatigue and weakness, which is just from all the chemo, but nonetheless I’m working 4+ hours most days now and productive at my job that has begun paying me for full 40 hours even though I’m working under 20 hours/week. I am however getting the job done and it’s a critical role that I have in our company.
I’m grateful to God for the progress I’ve made and I’m extremely optimistic in spite of the seriousness of the “incurable” metastatic stage4 esophageal cancer that I have. I put incurable in parentheses because it’s God that decides my future and with God, ALL things are possible.
So this is my positive experience to share with all of you today.

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Thinking of you Ernest. And thank you Gentlebreezes, Cromme50 for the information you shared to remain positive.
I have been diagnosed with stage 3 EC and awaiting chemo-radiation neoadjuvant therapy, then esophagectomy.
Its scary stuff but feeling positive and have heard of a few people that are doing well post Rx.

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Profile picture for earnest @earnest

Thank you gentlebreezes. I am a couple of weeks away from surgery after chemo and radiation. Kinda scary times, but faith in God and testimonies like yours are encouraging. Pray for me... if your a praying person
If not, wish me luck!😄

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Hi Earnest,

What I found very helpful in preparing for the surgery was talking to a patient who had received the same surgery from the same doctor. My doctor gave me the contact information for a patient willing to share her experiences. She said what she found most helpful was sessions with a hypnotherapist, believe it or not. So I contacted the person she used and she prepared an audio tape for me to listen to repeatedly. It was personalized and I listened to it often and I was extremely calm going into the surgery -- quite unlike me really.

She had me visualize recovering from the surgery and what I would say, which was, "Yay, we did it!" She had me think about what the surgeon would say, "It was very successful." So instead of worrying I focused on anticipating the positive outcome and that actually worked very well for me.

I also had my two minor daughters by my side and friends who were a great help. My friend even made personalized shirts with "Team (my name)" on them which my loved ones and even the doctor wore, so I felt lots of positive energy.

The night before the surgery we had a gathering with friends and family.

I will pray for you and wish you luck!!!

My friend also brought me pink stuffed cat at the hospital-- whatever little details can make you smile!!!

P.S. On the flip side, I also got all my affairs in order, calmly, just in case... and knowing everything was organized gave me a peace as well.

YOU GOT THIS!!!!

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Profile picture for justtrust @justtrust

Hi Rick,
What an encouragement. I sit now, next to his death bed, my 12-year-old on her device nearby and my 7-year-old sleeping at Auntie’s house. I don’t want to see anyone else, because I know the look in their eyes will force me into the reality that this is really happening.

I learned a lot this year and I strongly encourage all esophageal cancer patients to attend Molecular Hydrogen Institute’s Summit in September.
https://h2mhisummit.org/

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My prayers are with you. Stay strong and God bless 🙌 🙏

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Profile picture for gentlebreezes123 @gentlebreezes123

When I was diagnosed with Stage 3 EC, I searched online and found someone who had survived, at that time, 18 years after treatment. He was very encouraging and I did everything he said to do. I had chemo, radiation and surgery, and also did natural approaches such as hypnotherapy, massages, reducing stress, flower therapy, healing, ginger water and anything and everything anyone suggested. I am now going on celebrating 11 years. There were challenges of course -- I got a pulmonary embolism after chemo -- but a positive attitude and trying every possible avenue to find success contributed to my outcome. It also kept me very busy so I didn't have as much time to reflect on it all. It is difficult when you're in the middle of it, but there will be brighter days! My best wishes to anyone facing this situation at this time. Also, of course, get the best doctors you can find.

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Thank you gentlebreezes. I am a couple of weeks away from surgery after chemo and radiation. Kinda scary times, but faith in God and testimonies like yours are encouraging. Pray for me... if your a praying person
If not, wish me luck!😄

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I’ll have to ask the doctor I know the tumor is around 4 inches but still if the chemo radiation shrinks it I would think if any leftovers they could be removed surgically

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Profile picture for gburdette @gburdette

Hello GB, when were you diagnosed? Where did you get treatment? My husband s doctors just told us yesterday that surgery was not an option. We sre stage 3 with lymph nodes involved. We also thought chemo radiation then surgery with possible immunotherapy, advice appreciated.

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I had stage 3 with lymph nodes involved (2 of them). I did Neoadjuvant chemo followed by gastroesophajectomy. Stage 4 is argued to be inoperable, but i haven't heard of stage 3 being inoperable unless perhaps many nodes were involved.

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