Esophageal cancer....transitioning to food

Posted by trudivo @trudivo, Jun 17, 2017

Hi everyone. My husband recently had surgery and while he still has the feeding tube, he is transitioning to foods. Just looking for any tips. We know to start with soft foods, small amounts, and no fluids during, but just thought I’d see if anyone has any other info…. thanks!

@angelag

My husband was stage 4 with a 12cm tumor in his esophagus and signs of malignancy in 4 surrounding lyph nodes. He didn’t have surgery only chemo — the tumor is now gone and he was declared in complete remission. He is eating almost everything in sight and gaining weight but it took approx. 9 months after diagnosis to get to this point. Everyone is different. It’s a struggle in the beginning but in the end my husband said it was worth it. Soft foods, protein, many small meals over the course of the day — ice cream?? (my husband’s favorite). I send best wishes for a speedy recovery.

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His oncologist is at Greenwich Hospital and is affiliated with Smilow cancer center at Yale and Weill Cornell and Columbia Presbyterian in NYC.

@maryhelen

Colleen, we have an esophageal cancer support group that meets, but we also meet patients when they are here for appointments, when they are in the hospital, etc. I try to connect those with like protocols. We all have eating problems after procedures. Our group just talks about what works & what doesn’t work with each of us. I live in JAX. Private message me if you want more info.

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I started this support group ten years ago by listing my name, email & telephone number in newspapers for esophageal cancer support. I have worked with over 400 patients. They contact me from California to Maine, etc. I reposted on my Face Book page yesterday new research that lists the ten most dangerous operations & esophageal was #1 for difficulty.

@maryhelen

Esophageal Cancer Support Group meeting at Mayo Clinic in Jacksonville, FL

Just want to remind all of you that our Esophageal Cancer Support, Inc. meeting is next Friday, July 21 at 12:30 p.m. in Room 153 of the Vincent Stabile Building North on the Mayo campus. Drs. Herb Wolfsen and Michael Wallace are presenting the program which will start promptly at 12:30, followed by questions & answers. Much of our meetings are our sharing what works & what doesn’t work in this fight against esophageal cancer. We all have eating problems following procedures as well as dumping, etc. Please join us – all care givers, medical persons, etc. are welcome.
Mary Helen Duggar

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We have a professional who is going to do a program on that after the first of the year…doesn’t help you now, but there are a lot of smoothie recipes out; drink Kefir, sold in most markets that comes in peach, blueberry, etc. The main thing is to keep his immune system up!

@angelag

My husband was stage 4 with a 12cm tumor in his esophagus and signs of malignancy in 4 surrounding lyph nodes. He didn’t have surgery only chemo — the tumor is now gone and he was declared in complete remission. He is eating almost everything in sight and gaining weight but it took approx. 9 months after diagnosis to get to this point. Everyone is different. It’s a struggle in the beginning but in the end my husband said it was worth it. Soft foods, protein, many small meals over the course of the day — ice cream?? (my husband’s favorite). I send best wishes for a speedy recovery.

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Hi, angelaG! Sounds like my husband is where your husband was. Do you know the chemo drug he was on? My husband hasn’t started his treatment yet. Thank you!

@angelag

My husband was stage 4 with a 12cm tumor in his esophagus and signs of malignancy in 4 surrounding lyph nodes. He didn’t have surgery only chemo — the tumor is now gone and he was declared in complete remission. He is eating almost everything in sight and gaining weight but it took approx. 9 months after diagnosis to get to this point. Everyone is different. It’s a struggle in the beginning but in the end my husband said it was worth it. Soft foods, protein, many small meals over the course of the day — ice cream?? (my husband’s favorite). I send best wishes for a speedy recovery.

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So glad to hear your husband is doing well!

@angelag

My husband was stage 4 with a 12cm tumor in his esophagus and signs of malignancy in 4 surrounding lyph nodes. He didn’t have surgery only chemo — the tumor is now gone and he was declared in complete remission. He is eating almost everything in sight and gaining weight but it took approx. 9 months after diagnosis to get to this point. Everyone is different. It’s a struggle in the beginning but in the end my husband said it was worth it. Soft foods, protein, many small meals over the course of the day — ice cream?? (my husband’s favorite). I send best wishes for a speedy recovery.

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Hi ssimons,
He was on oxalyplatin and 5fu along with a targeted therapy called herceptin. He has continued with maintenance chemo since early this year – it’s a low dose of chemo and herceptin minus oxalyplatin.

Oxalyplatin is a tough chemo. Some tolerate it well, others don’t – my husband was somewhere in the middle and finished only 6 rounds rather than the intended 8.

I wish you and your husband all the luck in the world.

I’m so happy to hear that he is able to start with food by mouth! I’ve had several surgeries to remove cancer from my mouth, and it can be pretty demoralizing to lose such a “normal” behavior. I’m sure you are both excited to transition. Since I was typically undergoing chemo when I moved back to soft foods, I preferred sweet over savory. I ate A LOT of chocolate pudding, cheesecake, and my mom’s peanut butter pie without a crust 🙂 I can’t endorse this diet (ha!), but I couldn’t bear to look at another bowl of soup or entertain the idea of mashed potatoes or scrambled eggs. In my last oral surgery I had half of my jaw removed, and it has taken over two years before I feel like I can go out and eat socially again. It can be really hard. Good luck to you both! I’d love to hear how things are going!

Hello @adriennef! Welcome to Mayo Clinic connect. Thank you for joining the conversation on transitioning to food after esophageal cancer. I feel as if this topic really pertains to any post operative cancer patient or any post chemotherapy patient. This is a great topic and will be really helpful to future readers that are here looking for answers from someone who has actually “been there”. Since you have experienced Chemo and several surgeries in your mouth, I’m sure you have a lot of knowledge on this topic. Sorry to hear you have had to battle so many times, I bet that’s been tough.

You mentioned that losing such a “normal” behavior can be pretty demoralizing- I’m wondering if you would be willing to talk more about it and how you got through it. What helped you the most to eat socially again? What tips or tricks do you have for others that worked for you? There are so many things that can help in this situation and so many of you that have experienced it, future members will greatly benefit from reading your history, if you’re comfortable sharing. Plus, I’m really hoping you will share your mom’s recipe for peanut butter pie!! 🙂 Maybe we could start a log of recipes that people enjoyed while transitioning to soft foods?

I know my friend, @nursemaven, had some successful recipes and some tips and tricks that worked while transitioning to soft foods. Please share them here if you feel comfortable doing so. I’m going to bring in the whole gang, in hopes that everyone will do a little sharing of tips! @trudivo, @nanny23, @izzy, @geezer, @patricia1215, @lisa_sj99, @maryhelen and @angelag

Thanks, @jamienolson ! I’m really happy to be here to learn from other survivor’s journeys. You are right- it is a helpful topic for so any people. I didn’t have esophageal cancer, but survived six bouts with oral cancer.

Because of my surgeries I have a very limited mouth opening, have lost quite a bit of my tongue function, and have only half of my bottom teeth. Radiation has stolen most of my saliva. The combination makes eating extremely tricky (and pretty unattractive!). I quite often get food “stuck” in my throat and have difficulty swallowing. It is nearly impossible to carry on a conversation while eating.

To be honest, I shed a lot of tears over the loss of being able to eat around others. I frequently would eat a meal before meeting friends because I knew it would be too tough to eat in public. It was a loss that I never anticipated, and my doctors never discussed with me, but it was pretty painful. You don’t realize how much community is shared and relationships are built around food until you lose it.

I don’t know that I have any tips of getting through it. I didn’t know if it would ever change or get better for me. But, at the same time, I was happy to sacrifice being able to eat with my friends and family to be alive! All I can say is that it is difficult and another reminder that life isn’t how it used to be.

It has just been in the past few months that I have really tried to push myself to tackle foods that aren’t soft. Bread and meat are both still really tricky for me, as are crunchy foods, but I’m trying! I’ve found that if I can add some sauce or dressing, that typically helps. I relied on my feeding tube for 2.5 years for most of my calories. I am thrilled to have it removed on Tuesday!

I’ll see if I can rustle up the peanut butter pie recipe, although I’m afraid if I see it, I might have to make it 😉

I’ve learned a lot after six bouts of cancer over ten years. I feel like I’ve seen it all: seven surgeries, four chemotherapy agents, IMRT twice, proton beam radiation once, and an immunotherapy clinical trial. I will try to write up a summary over on the “head and neck cancer” thread. Hopefully my experience might help others in their fight.

@maryhelen

Colleen, we have an esophageal cancer support group that meets, but we also meet patients when they are here for appointments, when they are in the hospital, etc. I try to connect those with like protocols. We all have eating problems after procedures. Our group just talks about what works & what doesn’t work with each of us. I live in JAX. Private message me if you want more info.

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How would I be able to read all your information you have collected regarding esophageal cancer? My husband had the surgery, now we are wishing he never did. It has been down hill ever since! Now he has the cancer recurring and it hasn’t been that long plus it is in his lymphs now and surgical area.

@maryhelen

Colleen, we have an esophageal cancer support group that meets, but we also meet patients when they are here for appointments, when they are in the hospital, etc. I try to connect those with like protocols. We all have eating problems after procedures. Our group just talks about what works & what doesn’t work with each of us. I live in JAX. Private message me if you want more info.

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This site has removed my contact email and telephone number for esophageal cancer support. We will meet again at 12:30 October 20th on the Mayo campus in Jacksonville. You and your husband are most welcome to come. We share what works and doesn’t work to help each other. I also did a survey of members asking what they wish they had known prior to a procedure, when they were in the hospital as well as post procedure. It helps just to talk with someone who has been through the same protocol. I do hope your husband feels better.

@maryhelen

Colleen, we have an esophageal cancer support group that meets, but we also meet patients when they are here for appointments, when they are in the hospital, etc. I try to connect those with like protocols. We all have eating problems after procedures. Our group just talks about what works & what doesn’t work with each of us. I live in JAX. Private message me if you want more info.

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We don’t meet in November – we meet in OCTOBER! Coleen, if you can edit that for me, I would appreciate it. Thank you.

@maryhelen

Colleen, we have an esophageal cancer support group that meets, but we also meet patients when they are here for appointments, when they are in the hospital, etc. I try to connect those with like protocols. We all have eating problems after procedures. Our group just talks about what works & what doesn’t work with each of us. I live in JAX. Private message me if you want more info.

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Your post has been corrected to October as per your request, @maryhelen.

Anyone wishing to contact Mary Helen about the in person support group at Mayo Clinic Jacksonville, FL, please feel free to write to her here or send a private message.

Of course, not everyone can attend a support group in Florida in person. Luckily we can offer virtual connection too here on Connect.

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