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trudivo
@trudivo

Posts: 4
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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Nanny23
@nanny23

Posts: 18
Joined: May 23, 2017
Posted by @nanny23, Sat, Jun 17 8:38pm

Hope he feels better soon. Just found out I have Barrett’s esophagus. I have trouble with eating too.


Jamie Olson, Connect Moderator
@jamienolson

Posts: 188
Joined: Apr 21, 2016
Posted by @jamienolson, Sun, Jun 18 5:33pm

@trudivo, Hello and welcome to Mayo Clinic Connect. This is a great topic for the community. Thank you for posting it. All future readers will benefit from this post as well.

Please meet members @lzzie @mrsjhagen18, @geezer, @patricia1215, @hemicars and @lisa_sj99– all members who have mentioned trouble swallowing or caring for a loved one with throat cancer.

I would also like to share the link to our caregivers group with you. Please feel free to post and connect with those in the group that also are caring for a loved one. https://connect.mayoclinic.org/group/caregivers/

Did you and your husband meet with a dietician post operatively? If so, did they give you ideas for extra calories? Would smoothies be an option for him? There are all kinds of recipes on the web. (if you find a favorite make sure to share it with your friends on connect! 🙂 )


trudivo
@trudivo

Posts: 4
Joined: Jun 17, 2017
Posted by @trudivo, Mon, Jun 19 7:14am

Thank you, Colleen. We did visit preoperatively, and she did give us an overview then, but as Brad had a few complications we have not been for his post-op follow up with the Nutrition department.


Mary Helen
@maryhelen

Posts: 11
Joined: Jan 31, 2012
Posted by @maryhelen, Thu, Jun 22 8:12am

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.


Colleen Young, Connect Director
@colleenyoung

Posts: 3365
Joined: Jul 23, 2014
Posted by @colleenyoung, Thu, Jun 22 8:26am

Welcome to Connect, Mary Helen.
Sounds like Connect is an online version of your in-person support group and the mentoring you do when patients are in Jacksonville for appointments. Meeting someone who has been there is so important. Being able to do that in person is extra special. I’d love for Connect to be an extension of your support group, to help people stay connected when they leave the clinic and return home perhaps further afield and even other states or countries. We have many head and neck cancer patients and family members from all over the country and from other countries participating in the discussions here.

Mary Helen, you’ll notice that I removed your personal email and phone number from your message above. We recommend not sharing personal contact information to keep you safe and from getting unwanted spam. You can read more about the Community Guidelines and how we keep the community safe, respectful and inclusive here: https://connect.mayoclinic.org/community-guidelines/

Can you please post more information about your support group in Jacksonville, Florida? When and where do you meet?


trudivo
@trudivo

Posts: 4
Joined: Jun 17, 2017
Posted by @trudivo, Fri, Jun 23 6:20am

Definitely would like to know when you meet 🙂


Mary Helen
@maryhelen

Posts: 11
Joined: Jan 31, 2012
Posted by @maryhelen, Fri, Jun 23 7:35am

We meet quarterly, the third Friday of January, April, July & November at 12:30 in the Vincent Stabile Building, Room 150 or 153. It is right behind Mayo’s parking garrage. Dr. Michael Wallace & Dr. Herb Wolfsen are doing the progrsm in July & in October another gastroenterologist there is presenting a program on the bacteria in our guts! We hear so much about that now – which is the good bactetia – which is bad – are we taking the wrong probiotics, etc. I am anxious to hear her. Dr. Wallace just spent a month working at the largest esophageal cancer center (hospital) in the world in Kenya!

Everyone is welcome – we talk about what works & what doesn’t work for us. We all have eating problems after procedures as well as dumping, etc. The bacteria in our guts have an effect on this, for sure…Newspapers, our cards & brochures all have my phone & email to contact me – I met new patient at Mayo this Monday & have an appointment to meet another next week. Let me know if we can help!


Mary Helen
@maryhelen

Posts: 11
Joined: Jan 31, 2012
Posted by @maryhelen, Fri, Jul 14 7:16am

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.


AngelaG
@angelag

Posts: 3
Joined: Jul 12, 2017
Posted by @angelag, Wed, Jul 12 11:36am

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.


Mary Helen
@maryhelen

Posts: 11
Joined: Jan 31, 2012
Posted by @maryhelen, Fri, Jul 14 7:08am

Where did he go for treatment?


AngelaG
@angelag

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Joined: Jul 12, 2017
Posted by @angelag, Fri, Jul 14 7:16am

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


Mary Helen
@maryhelen

Posts: 11
Joined: Jan 31, 2012
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

Posts: 3
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

Posts: 11
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: 11
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

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