Stage IV 8 weeks post Esophagogastrectomy what to eat?

Hello everyone, this is my first post and looking for some advice for my Mom who was diagnosed with Stage 4 andinocarcinoma at GE junction Last Sept.  She underwent presurgery FLOT chemo for 8 weeks and surgery was performed at Lehigh Valley cancer institute on Jan 18th.  Pathology confirmed that chemo didn’t work (no dead cancer cells) however tumor shrunk from size of fist to walnut.  Surgery was deemed a success.

she was not a candidate for minimally invasive due to previous surgeries so was operated on through her abdomen as well as her back.  She’s suffering from back pain on a regular basis and wondering how long this will last?

she is also struggling with excessive gas and pain with most meals.  She’s also dealing with constipation most days where as before surgery, bowels were decently normal.

can anyone provide insight into food choices that you were able to tolerate at this stage of recovery As well as any understanding of how long it will be until she starts feeling more normal?

 

thank you

melissa

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    My back pain subsided after about one year

    Hello Melissa,

    I also had "open" surgery like your Mom. In my case in 2009. It was almost a year before the back pain I had went away. Initially, I had pain just below my right shoulder blade when I did any repetitious activity including walking or yard work. Gradually, things improved over the year after surgery. I now have a feeling of pressure in the same location when I stand for a long time or walk or do yard work but no pain. 

    In terms of dealing with gas and abdominal discomfort, I found that if I ate things that were relatively bland and easy to digest I did better. I mean things like scrambled eggs, chicken, mashed potatoes, macaroni and cheese, etc. I found I had trouble with foods that were spicy, and foods that were hard to digest like steak, spaghetti, etc.

    With time all of these things improve but I have to say that it was a full year before I felt that I was back to feeling as well as I did before surgery. It does take time.   

    Best Regards,

    Paul

     

  • Melisuchka
    Melisuchka Member Posts: 2
    edited March 2019 #3
    paul61 said:

    My back pain subsided after about one year

    Hello Melissa,

    I also had "open" surgery like your Mom. In my case in 2009. It was almost a year before the back pain I had went away. Initially, I had pain just below my right shoulder blade when I did any repetitious activity including walking or yard work. Gradually, things improved over the year after surgery. I now have a feeling of pressure in the same location when I stand for a long time or walk or do yard work but no pain. 

    In terms of dealing with gas and abdominal discomfort, I found that if I ate things that were relatively bland and easy to digest I did better. I mean things like scrambled eggs, chicken, mashed potatoes, macaroni and cheese, etc. I found I had trouble with foods that were spicy, and foods that were hard to digest like steak, spaghetti, etc.

    With time all of these things improve but I have to say that it was a full year before I felt that I was back to feeling as well as I did before surgery. It does take time.   

    Best Regards,

    Paul

     

     

     

    Paul,

    thank you for the feedback and will pass along the information.  

  • Sasha69
    Sasha69 Member Posts: 5
    edited September 2019 #4
    Father diagnosed with Stage 1 at the GEJ

    Hello everyone,

    My 74 year old dad just found out he has Barret's esophagus with high end displasia. We thought that it was precancerous but after an endoscopy where they did an EMR, we found out it was cancer but only stage 1 which we felt was lucky. We met with Dr. Levy and Dr. Baker at UPMC Pittsburgh who work with Dr. Lucetich. They suggest no chemo and an esophagectomy. Other than the cancer my dad is extremely healthy watches what he eats and works out regularly, and they feel he is an excellent candidate. Since he will have no chemo before the surgery, the doctors think he we do well since he won't be weak or have a low immune system caused by chemo. My dad is extremely afraid to have this surgery because of the post op recovery. We do feel the doctors are top notch. Do any of you have any comments on this? He could choose chemo but we worry that if it doesn't work he will have to do the surgery and probably not be near as healthy then.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Sasha69 said:

    Father diagnosed with Stage 1 at the GEJ

    Hello everyone,

    My 74 year old dad just found out he has Barret's esophagus with high end displasia. We thought that it was precancerous but after an endoscopy where they did an EMR, we found out it was cancer but only stage 1 which we felt was lucky. We met with Dr. Levy and Dr. Baker at UPMC Pittsburgh who work with Dr. Lucetich. They suggest no chemo and an esophagectomy. Other than the cancer my dad is extremely healthy watches what he eats and works out regularly, and they feel he is an excellent candidate. Since he will have no chemo before the surgery, the doctors think he we do well since he won't be weak or have a low immune system caused by chemo. My dad is extremely afraid to have this surgery because of the post op recovery. We do feel the doctors are top notch. Do any of you have any comments on this? He could choose chemo but we worry that if it doesn't work he will have to do the surgery and probably not be near as healthy then.

    Sorry to Hear

    Hello Sasha,

    I'm sorry that you find yourself here, but stage I is fairly uncommon and your father is lucky to have his cancer caught so early.  He has the best possible prognosis.  UPMC is a top flight hospital for EC.  I would suggest going with their recommendations.  That said, an esophagectomy is serious, BFD surgery.  Your father should have a full conversation with his doctors before making his decision.  There are side effects of the surgery.  There are, of course, also side effects to chemo.  If it was me, I'd trust the top of the line folks at UPMC.  

    Best Wishes,

    Ed

  • midlandgigi
    midlandgigi Member Posts: 16
    What to Eat

    Melissa, 

    Eating will be trial and error.  The first rule is to eat small bites, chew thoroughly and eat small total amounts at each meal.  I use a salad plate to help me remember how much I can eat.  Stop eating before you feel really full.  Anything acidic or gassy can cause problems.  Avoid tomatoes, salad greens, flax seeds, pinto beans, caffeine, sugar and carbonated drinks.  Dairy and soy  were a problem for me.  Be very observant and make note of foods that cause cramps, nausea, etc.  Since food intake is limited be sure to get as much nutrition as possible each meal.  Peanut butter crackers are actually easily digested and are a portable source of protein.  Beware of nutrition supplements and foods that have a lot of sugar.  Instead of ice cream eat yogurt.  My Dr. recommended Activia brand because of it's probiotics.    

    Blessings

    Sorry, I just saw Melissa posted in March so my post is overdue.  I'll leave it on in case someone else needs the info.  

  • mardigras
    mardigras Member Posts: 215 Member
    edited October 2019 #7
    What to eat.

    We are English, but live in the Canaries now as my family are here. Prior to my husband’s op, we kept him healthy and upped his strength by giving him porridge for breakfast, with cream. Also a smoothie mid morning with blue fruits( when the blackberries are available, pick loads and freeze them).. I used the frozen blue fruits when I couldn’t get fresh with Greek yogurt. In the afternoon he had a third of a tub of quark with Mango or a soft fruit and a teaspoon of linseed oil. These are all things that the Canarians use to treat cancer. I don’t know if your Mother has swallowing problems, but if she can swallow, Robs favourite was chicken in coconut cream, with lemon grass, ginger and peanut butter. I served that with rice. If you would like the recipe, i’ll Write it out for you.

    i also made watercress soup which he loved and I think he needed the iron. The chemo seems to deplete iron. Again, if you would like the recipe, i’ll write it for you.

    There is a train of thought here that baking soda helps to treat cancer. We read a lot about it at the time. My husband decided that it couldn’t hurt , so puts a half teaspoon in a glass with a little water and drinks it.

    he was diagnosed in July 2011 and is still healthy. He now eats pretty much what he likes, but still loves all the things he had before and after surgery.

    As to feeling normal, it is a long recovery after an Ivor Lewis which is what Rob had. His back pain lasted for about a year. He still suffers with dumping syndrome sometimes, but uses Loperamide to control it. His weight has stabalised. He will never be tubby again, but he is slim and reasonably fit for his 74 years.

    I do hope your Mum is feeling better soon.

    Let me know if I can help with anything. I wish you all the best as I know full well how difficult it is for carers.

    Hugs and prayer,

    Marci