Esophageal cancer treatment: Anyone have good experiences to share?

Posted by earnest @earnest, May 28 9:28am

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!

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@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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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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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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@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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@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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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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@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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Nothing is impossible with God. Keep the fairh brother! Prayers are with you.

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@stever1

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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Thank you very much Stever1, very kind for you to say. I absolutely appreciate all prayers. I very much can attest to their efficacy.

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While the biggest improvement due to my treatment is the gradual but steady ability to eat again, I also was noticing a reduction in spine bone pain from the metastasis. The past few days the pain level has been quite high, making me wonder if there really is any improvement in the bone tumor, or maybe progression? I will know the answer to this in two weeks when they repeat the PET scan. Anyway, in looking for any information about secondary bone cancer I stumbled upon a drug called CADD522. It a genetic or immuno drug that apparently has a very good track record in treating bone cancer with very strong efficacy. The report says it can be used alongside chemo and has no significant side effects.

I downloaded the information and intend to show it to my oncologist at my next treatment Wednesday ( which is for both folfox chemo and the two immunotherapy drugs I also get every 3 weeks ( making for a long day at the infusion center)
I’m posting this just in case anyone has any knowledge of this drug or wishes to also inquire about it if they also have Esophageal cancer with metastasis to the bones, or if that is their primary cancer.
There are quite a few new treatments out there and you would assume your oncologist knows about them, but maybe they don’t. No harm in asking about it, right?

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@rselicmeister

While the biggest improvement due to my treatment is the gradual but steady ability to eat again, I also was noticing a reduction in spine bone pain from the metastasis. The past few days the pain level has been quite high, making me wonder if there really is any improvement in the bone tumor, or maybe progression? I will know the answer to this in two weeks when they repeat the PET scan. Anyway, in looking for any information about secondary bone cancer I stumbled upon a drug called CADD522. It a genetic or immuno drug that apparently has a very good track record in treating bone cancer with very strong efficacy. The report says it can be used alongside chemo and has no significant side effects.

I downloaded the information and intend to show it to my oncologist at my next treatment Wednesday ( which is for both folfox chemo and the two immunotherapy drugs I also get every 3 weeks ( making for a long day at the infusion center)
I’m posting this just in case anyone has any knowledge of this drug or wishes to also inquire about it if they also have Esophageal cancer with metastasis to the bones, or if that is their primary cancer.
There are quite a few new treatments out there and you would assume your oncologist knows about them, but maybe they don’t. No harm in asking about it, right?

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Hi @rselicmeister,
My husband is on the same boat, but his met is on the shoulder ( very painful). If it wasn't for the shoulder, he would be feeling fine.
May I ask what kind of immunotherapy are you on?
Can you also share your doctor's opinion on CADD522, I'll send a email to his onco to have his opinion as well.

Thank you!!

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