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trudivo
@trudivo

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Joined: Jun 17, 2017

Esophageal cancer....transitioning to food

Posted by @trudivo, Sat, Jun 17 4:17pm

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!

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ssimons
@ssimons

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Joined: Aug 22, 2017
Posted by @ssimons, Mon, Aug 21 9:52pm

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!

ssimons
@ssimons

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Joined: Aug 22, 2017
Posted by @ssimons, Mon, Aug 21 9:54pm

So glad to hear your husband is doing well!

AngelaG
@angelag

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Joined: Jul 12, 2017
Posted by @angelag, Tue, Aug 22 7:11am

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.

Mary Helen
@maryhelen

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Posted by @maryhelen, Wed, Jul 12 11:45am

I do hope you & your husband can come to our meeting next Friday – some drive two hours or so to get here.

Mary Helen Duggar

AngelaG
@angelag

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Joined: Jul 12, 2017
Posted by @angelag, Wed, Jul 12 11:51am

At present we don’t live in the area or we would attend. We are in Connecticut and looking for a spot in or around Ponte Vedre to retire. I will continue to follow these discussions and possibly post — once we get to Florida, we will attend.

Mary Helen
@maryhelen

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Joined: Jan 31, 2012
Posted by @maryhelen, Fri, Jul 14 7:06am

I used to do a newsletter every couple if months & I may start it again. A fellow from SC was asking for it yesterday. .

Mary Helen
@maryhelen

Posts: 13
Joined: Jan 31, 2012
Posted by @maryhelen, Wed, Jul 12 1:44pm

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

trudivo
@trudivo

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Joined: Jun 17, 2017
Posted by @trudivo, Fri, Jul 14 6:57am

We’ll definitely see you there Mary Helen… thank you! We also have a nutritionist appointment at 2

Mary Helen
@maryhelen

Posts: 13
Joined: Jan 31, 2012
Posted by @maryhelen, Fri, Jul 14 7:02am

Wonderful. Dr. Wolfsen is going to tell us some of the new things going on as well as some of the things the doctors are interested in & Dr. Wallace will also present some interesting things he has been doing. See you there – 12:30!

Mary Helen
@maryhelen

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Joined: Jan 31, 2012
Posted by @maryhelen, Fri, Jul 14 7:20am

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!

Posted by @adriennef, Fri, Sep 1 7:20pm

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!

Posted by @jamienolson, Sat, Sep 2 12:15pm

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

Posted by @adriennef, Sat, Sep 2 7:32pm

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.

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