I'm a Newbie! I need treatment recovery advice

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Sarah B
Sarah B Member Posts: 5
Hi Everyone. I love the energy I have found reading these posts on and off for the past three months. My husband was diagnosed with EC January 3 -- what a great way to start the year! After extensive research and prayer we decided to go to MD Anderson for his treatment. After being told by other doctors that we caught it early, we discovered at MDA after the endoscopy that he was a T4N1. Not the news we were looking for, but we still forged ahead. Rather that going with traditional IMRT, we opted for Proton Beam Therapy. He just finished his 5 week round of chemo (Taxotere and Xeloda) and proton radiation therapy.

I am looking for help with his recovery period until surgery scheduled for 5/19. He has significant pain at the tumor site and doesn't like using the pain meds prescribed. He can swallow liquids and eat some soft foods, but he is having the mucous regurge and general lack of appetite. He is dropping weight faster now than when he was in treatment. We were told it would take two weeks for him to feel "normal" again, but this is the 10th day and he is no better that when we left Houston to return home. Can any of you tell me how long it will take to heal/recover from the radiation and will he be able to eat somewhat normally prior to surgery? He is eating/drinking smoothies, sashimi, egg salad and soup these days. He's tired of tapioca and cottage cheese. Thank you!

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  • BMGky
    BMGky Member Posts: 621
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    Husband's treatment regimen different
    Good luck on your treatment. It's exciting he is getting a chance for surgery. Following chemo/radiation (and during), my husband had throat infection, pain, weight loss, feeding tube, hospitalization, etc., etc. He then had about 6 weeks or so before surgery. Eating was a guessing game. He would eat something, when he had a little appetite, enjoy it, then a few days later, it made him sick. After about 4 weeks, he started eating better. He still had the feeding tube which we flushed and used to supplement his diet. He was starting to feel "normal," when he had the surgery. Back to square one. However, after about 7 months, he really started improving. It is a year post op. He works hard every day. His lung capacity is almost normal. His legs are strengthening and so far, follow up scans show NED. So, it is a great adjustment, but the joy of living outweighs all the negatives. While our story is different, hope it gives you an idea what someone experienced.
  • Sarah B
    Sarah B Member Posts: 5
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    BMGky said:

    Husband's treatment regimen different
    Good luck on your treatment. It's exciting he is getting a chance for surgery. Following chemo/radiation (and during), my husband had throat infection, pain, weight loss, feeding tube, hospitalization, etc., etc. He then had about 6 weeks or so before surgery. Eating was a guessing game. He would eat something, when he had a little appetite, enjoy it, then a few days later, it made him sick. After about 4 weeks, he started eating better. He still had the feeding tube which we flushed and used to supplement his diet. He was starting to feel "normal," when he had the surgery. Back to square one. However, after about 7 months, he really started improving. It is a year post op. He works hard every day. His lung capacity is almost normal. His legs are strengthening and so far, follow up scans show NED. So, it is a great adjustment, but the joy of living outweighs all the negatives. While our story is different, hope it gives you an idea what someone experienced.

    Thank you
    Our doctor said that as long as he can swallow and get liquids down, he's better off without a tube. It's just so frustrating because something will work one day and a few days later it won't. I love to cook and thought that would come in handy, but not in this situation. You did give me hope and inspiration. It is an incredibly slow and frustrating process.
  • Donna70
    Donna70 Member Posts: 852 Member
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    Sarah B said:

    Thank you
    Our doctor said that as long as he can swallow and get liquids down, he's better off without a tube. It's just so frustrating because something will work one day and a few days later it won't. I love to cook and thought that would come in handy, but not in this situation. You did give me hope and inspiration. It is an incredibly slow and frustrating process.

    just saying Taxotere takes a lot out of you
    Hi Sarah,
    Just wanted to say that I had 3 cycles of Taxotere as a post surgery chemo for a bad node and it took a lot out of me and awhile before I got my strength back. I am not familiar with Taxotere and the other drug as pre-surgery drugs. That is great he is getting the chance at surgery at stage 4, most do not. I wish him the best and hope he does get some of his mojo back before he undergoes surgery. Good luck to you. take care,
    Donna70
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
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    Food Suggestions
    Hello Sarah -
    Here are a few things that Brendon enjoyed eating when he was able to enjoy soft foods... He ended treatment 7 days ago and can not eat anything for the most part.

    I would boil brats and de-skin them. Then I would use a mini chopper and chop up the meat w/ mac and cheese. Brendon really liked it! Also, he enjoyed eating gravy with chopped up sausange for breakfasts. If you like to cook... bake pork chops, potatoes, and chicken of rice soup for about 3-4 hours. The meat gets really tender...then you can chop it all up and it's pretty liquidy...

    Good luck!!
    Susie
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  • cher76
    cher76 Member Posts: 292
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    Also at MD Anderson
    Sarah,
    My husband was diagnosed with EC stage VI in Oct.2010. Living in Texas we also sought treatment at MD Anderson. You can read our story by clicking on my name in the sidebar. I also posted it on Susie's posting "Need Help from all of you..." Surgery is not an option for my husband, and he is currently on chemo. He has lost over 100 lbs and has not had a feeding tube placed partly because his Dr. at MDA said he did not need one. Our oncologist here at home wants him to get one and we are seriously considering it now. I would like to know who your dr. is at MDA. Have you met anyone else there with this cancer? You can email me through this sight if you would rather. Thanks
    Cheryl