Eating Solid Food

My husband was diagnosed with esophageal cancer last month. The doctor told us it was stage 3 that he's treating as stage 4, but then told me it is stage 4. He has a tumor at the base of the esophagus right where it meets the stomach. He can't eat anything and hasn't for about 2 months now. At first he could eat broth and drink some thin liquids. Now he can't do that. He gets his nutrition through a feeding tube. He had his first chemo in the doctor's office on June 5th. Then he wore a continuous feed pump for 5 days. He goes back to start round 2 on June 26th.  My heart breaks for him because he can't eat. Yesterday he told me he was thinking about what he ate for lunch last summer.  I'm wondering if anyone in this same situation could tell me how many rounds of chemo before they could tell the tumor had shrunk enough for them to eat; or is this going to shrink it enough to eat without surgery to remove the tumor?

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    Ellie~Have given you more info than U asked 4 on another line!

    Hello Ellie – I’ve chosen to answer you on a separate topic line, but when you answer in the future, you can reply or ask more questions on this same line you started on.   See my answer to you on a separate topic line because all the info I've shared is applicable for others as well:   https://csn.cancer.org/node/310214 -

    Needless to say, I'm sorry for both you and your husband.  We hope his treatment will result in him being a surgical candidate and a long-time survivor. 

    Love Loretta

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Hello Ellie

    Hello Ellie,

    You ask about chemo shrinking the tumor to the point where your husband can eat.  That may well happen after several courses of chemo, but that's only a minor part of what you guys will be dealing with.  You sound like you guys are just in the beginning phase of figuring out what's going on.  I strongly suggest writing down things you are curious about or unsure of.  Take that list to your next oncologist appointment and don't worry about how much of his/her time you are taking up.  You can also get personal experiences from folks here, but those are mostly anecdotal and are definitely not from a professional.  

    Speaking of profesionals, did you know that mathematically, 50% of oncologists are below average?  It is well worth your time (it is actually worth your husband's life) to find those that are very good at what they do.  EC is not a sprained ankle that can be appropriately treated at the ER down the street.  While an inexperienced doctor can learn a great deal from making mistakes with your husband's case, it does you guys no good.  PLEASE find a high quality cancer center that has folks who deal with EC for a living.  A good chunk of the survivors here have travelled various distances for treatments/surgeries/second opinions.  You're likely to only get one chance at this.  Do it right, do right by your husband.

    Back to your original concerns.  I was stage III the 1st time.  I was struggling to swallow food, so I went to my gastroenterologist who found the EC.  Swallowing got much worse for me as I got my pre-op chemo/radiation.  The radiation basically fried my esophagus shut.  I had to take morphine and "magic mouthwash" (lidocaine based) to be able to eat anything at all.  Your husband's chemo sounds similar to mine.  I was getting weekly chemo with a 5 day infusion fanny pack of 5-FU.  

    I'll suggest to you guys that you get used to thinking about things like. "what he ate for lunch last summer" in the past tense.  Best case scenario is that your husband survives this and has to adjust to whatever his personal, "new normal" is.  Everyone here is dealing with their own "new normal".  It is quite simply the price that is paid for surviving.  It took me 8 years to regain the weight I lost from my 1st time around, but I am now 5 pounds heavier that I was pre cancer and am able to eat/drink whatever I want in almost whatever quantities I want.  I assure you that's rare, but I am evidence (anecdotal, but still...) that it is possible.

    Please continue to post questions here if you are curious, and please keep us updated as far as how things are going.

    Wishing you guys successful treatment,

    Ed

  • Ellie1229
    Ellie1229 Member Posts: 4
    edited June 2017 #4

    Ellie~Have given you more info than U asked 4 on another line!

    Hello Ellie – I’ve chosen to answer you on a separate topic line, but when you answer in the future, you can reply or ask more questions on this same line you started on.   See my answer to you on a separate topic line because all the info I've shared is applicable for others as well:   https://csn.cancer.org/node/310214 -

    Needless to say, I'm sorry for both you and your husband.  We hope his treatment will result in him being a surgical candidate and a long-time survivor. 

    Love Loretta

     

    Eating Solid Food

    Yes, you gave me way more information than I asked for. Thank you for trying to help. However, I have done quite a lot of research. We do understand this is going to be a long journey for us. We have faith that God will help us through this horrible hand we have been dealt.  We have a wonderful oncologist and are confident in our treatment. We did get a second opinion at a reputable university cancer center. When I said he received treatment in the doctor's office that wasn't exactly accurate. Treatment is in a cancer clinic attached to the office for now. They are building a new cancer center but it isn't completed. We are both educated people in our early 60s. We ask a lot of questions. We research. We were just wondering if anyone would give a response about the question I asked. I pretty much knew what the answer would be before I asked but sometimes you do things anyway when you already know the outcome. Thank you for your response.

  • Ellie1229
    Ellie1229 Member Posts: 4

    Hello Ellie

    Hello Ellie,

    You ask about chemo shrinking the tumor to the point where your husband can eat.  That may well happen after several courses of chemo, but that's only a minor part of what you guys will be dealing with.  You sound like you guys are just in the beginning phase of figuring out what's going on.  I strongly suggest writing down things you are curious about or unsure of.  Take that list to your next oncologist appointment and don't worry about how much of his/her time you are taking up.  You can also get personal experiences from folks here, but those are mostly anecdotal and are definitely not from a professional.  

    Speaking of profesionals, did you know that mathematically, 50% of oncologists are below average?  It is well worth your time (it is actually worth your husband's life) to find those that are very good at what they do.  EC is not a sprained ankle that can be appropriately treated at the ER down the street.  While an inexperienced doctor can learn a great deal from making mistakes with your husband's case, it does you guys no good.  PLEASE find a high quality cancer center that has folks who deal with EC for a living.  A good chunk of the survivors here have travelled various distances for treatments/surgeries/second opinions.  You're likely to only get one chance at this.  Do it right, do right by your husband.

    Back to your original concerns.  I was stage III the 1st time.  I was struggling to swallow food, so I went to my gastroenterologist who found the EC.  Swallowing got much worse for me as I got my pre-op chemo/radiation.  The radiation basically fried my esophagus shut.  I had to take morphine and "magic mouthwash" (lidocaine based) to be able to eat anything at all.  Your husband's chemo sounds similar to mine.  I was getting weekly chemo with a 5 day infusion fanny pack of 5-FU.  

    I'll suggest to you guys that you get used to thinking about things like. "what he ate for lunch last summer" in the past tense.  Best case scenario is that your husband survives this and has to adjust to whatever his personal, "new normal" is.  Everyone here is dealing with their own "new normal".  It is quite simply the price that is paid for surviving.  It took me 8 years to regain the weight I lost from my 1st time around, but I am now 5 pounds heavier that I was pre cancer and am able to eat/drink whatever I want in almost whatever quantities I want.  I assure you that's rare, but I am evidence (anecdotal, but still...) that it is possible.

    Please continue to post questions here if you are curious, and please keep us updated as far as how things are going.

    Wishing you guys successful treatment,

    Ed

    Eating Solid Food

    Thank you for your reply. I didn't give a lot of information on purpose. I just wanted a reply to that one question. I have done a lot of research and asked a ton of questions already. We are confident in our oncologist. He is associated with the newest and best hospital in the city. He is well-respected by every doctor we have talked to and has experience with esophageal cancer. He also works with the a very good radiation oncologist who has the latest radiation technology - the Varian TrueBeam.  Radiation is not an option for us at the present time. We did get a second opinion at a well-known university cancer center that is recognized for its work and its research. He concurred with our oncologist's diagnosis and treatment plan. We are educated and really do understand the situation we are in. Thank you for responding. I do understand what kind of information I am getting from this discussion board. Anecdotal information was what I was after this time. We have just begun this journey but we understand what we're up against. Thank you again for taking the time to respond. 

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    Ellie1229 said:

    Eating Solid Food

    Thank you for your reply. I didn't give a lot of information on purpose. I just wanted a reply to that one question. I have done a lot of research and asked a ton of questions already. We are confident in our oncologist. He is associated with the newest and best hospital in the city. He is well-respected by every doctor we have talked to and has experience with esophageal cancer. He also works with the a very good radiation oncologist who has the latest radiation technology - the Varian TrueBeam.  Radiation is not an option for us at the present time. We did get a second opinion at a well-known university cancer center that is recognized for its work and its research. He concurred with our oncologist's diagnosis and treatment plan. We are educated and really do understand the situation we are in. Thank you for responding. I do understand what kind of information I am getting from this discussion board. Anecdotal information was what I was after this time. We have just begun this journey but we understand what we're up against. Thank you again for taking the time to respond. 

    Ellie~Here's a "shorter reply" 2 the ONE ? U wanted an answer 2

    Hello again Ellie~

    It’s a welcome relief to know that you have conducted adequate research and are confident that the treatment course you are now following is the very best one.   Many people sign on here, and read these posts, yet they never post on their own.  I have those people in mind when I’m writing as well.  Most often those who write here for the first time are overwhelmed and in a state of shock to learn that they, or a member of their family, have been diagnosed with cancer.  The majority of people with whom we speak, both here on the web, and in conversations here at home on a day-to-day basis, are most often unfamiliar with Esophageal cancer.   A case in point--Interestingly, when my husband came home from his Esophageal Cancer support group meeting tonight, I was incredulous when he said that two different patients have Ivor Lewis Esophagectomies (Transthoracic- open) scheduled for this week and they don’t even know the stage of their cancer!   

    After reading your reply, I see that you state you “only wanted the answer to one question.”  When people write here and do not share much information, I’m left to wonder just how much they already know, and how I can be of help.  So I just naturally a_s_s_ume that they may not know the basics.  Many state that they have never heard of this cancer before and need to “know more.”  That’s the position from which I most often reply.

    You say, “I pretty much knew what the answer would be before I asked but sometimes you do things anyway when you already know the outcome.”  So for the record, and for those who might not have read my longer and more detailed reply, I will repeat my answer to that specific question on this forum.   Specifically this is how I chose to answer you relative to that question.  

    ______________________________________________________________

     My quote from here--https://csn.cancer.org/node/310214.

    “Ellie, you’ve asked only one thing.  “I'm wondering if anyone in this same situation could tell me how many rounds of chemo before they could tell the tumor had shrunk enough for them to eat; or is this going to shrink it enough to eat without surgery to remove the tumor?”

    Let me be honestly frank.  Usually patients exhibit the inability to swallow much of anything and that is how they come to know they have a problem.  Many find it difficult to swallow certain kinds of foods.  They go to a doctor finally when weight loss and inability to eat properly becomes a problem.  Too often the doctor sends them home with a prescription for “omeprazole” and does NOT order an endoscopy.  The story too often ends up that the patient actually has Esophageal Cancer, and only worsens even while they are taking some form of omeprazole.  In fact, it has been noted that the famous purple pill (NEXIUM) for instance, can actually often mask the symptoms of Esophageal Cancer, and many ultimately are diagnosed with an advanced stage of EC or even Stage IV Esophageal Cancer,  although their heartburn or acid reflux has improved!   (See article listed below)

    As I’ve said, chemo is designed to circulate throughout the entire body in search of cancer cells to kill.  It will not necessarily cause the tumor inside the esophagus to shrink enough that he will be able to eat again, without surgery.  Sometimes radiation can shrink the actual tumor itself enough to enable the person to eat some soft foods, but it will not eliminate the problem short of a surgical solution.” (End of Quote)

    _________________________________________________________________

    This is a “support group” where different patients and family members share both their sorrows, and their successes.  For some, it’s just a way to voice their frustrations.  And this forum is a place for that as well.  For others it is a “lifeline” that gives them hope that they too can be a “survivor”. 

    It’s gratifying to know that even as I continue my own battle with terminal cancer, (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) that I can help others by sharing the information I’ve learned from both research and from my own life’s experience. Ed, also a Stage IV cancer patient, takes a lot of his precious time to help others.  And I would be remiss if I didn’t mention “Paul61” who spends a lot of his time enlightening and encouraging others who are just beginning their journey down a treacherous road.  We're here providing "insight" as well as "hindsight" relative to our own specific cancers.  It is something we wish to do because we are so grateful to still be alive. 

    This small poem, “Along the Road”, comes from a 1939 book of poems.  For me, this says it all.

                                                            Along the Road

                                               I walked a mile with Pleasure;
                                              She chattered all the way,
                                              But left me none the wiser
                                              For all she had to say.

                                              I walked a mile with Sorrow ;
                                              And ne'er a word said she.
                                              But oh, the things I learned from her
                                              When Sorrow walked with me!

                                                (by Robert Browning Hamilton)

     

    Like most everyone here, my husband and I have walked with “Sorrow,” he with EC and me with Stage IV Ovarian...remembering that...

    “Life isn’t about waiting for the storm to pass—it’s about learning how to dance in the rain.”

    That’s why we say, “We’re just two beggars telling another beggar where to find a piece of bread.”

    Wishing for you and yours the very best,

    Loretta

  • Jamrroh
    Jamrroh Member Posts: 2
    edited October 2017 #7
    Hi,I'm John 

    Hi,I'm John 

    I could not swallow without pain. They found a 12 to 18 cm (mm?) tumor at the joint above the stomach. At the Cleveland Clinic they decided on radiation to shrink the tumor. 25 treatments along with 5 chemo sessions. Then 5 1/2 hour surgery to remove 80% esophagus and replace with stomach. 7 days in the hospital. 5 weeks on 100% feeding tube. Nothing by mouth. Then three weeks partial feeding tube and very small soft food meals. I'm a month after the feeding tube and it's tough trying to maintain weight. I'be lost about 20 lbs down to 158. Its hard eating such small bites of food and trying to eat often during the day. I have a Ct scan coming up but have no fear. I am Catholic and looking forward to heaven when I'm done here. With God all things are possible and all He asks is faith in Him. It could have been a living hell going through this but with heaven ahead of me (and a loving wife) it was ok. Did I mention I had 13 tubes into my body when I woke up after surgery. A day at a time. Remember, the next hand you shake maybe the Masters. Thank you Jesus. 

  • Jamrroh
    Jamrroh Member Posts: 2
    About me

    I have never posted anything in my life until now. 

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    Jamrroh said:

    Hi,I'm John 

    Hi,I'm John 

    I could not swallow without pain. They found a 12 to 18 cm (mm?) tumor at the joint above the stomach. At the Cleveland Clinic they decided on radiation to shrink the tumor. 25 treatments along with 5 chemo sessions. Then 5 1/2 hour surgery to remove 80% esophagus and replace with stomach. 7 days in the hospital. 5 weeks on 100% feeding tube. Nothing by mouth. Then three weeks partial feeding tube and very small soft food meals. I'm a month after the feeding tube and it's tough trying to maintain weight. I'be lost about 20 lbs down to 158. Its hard eating such small bites of food and trying to eat often during the day. I have a Ct scan coming up but have no fear. I am Catholic and looking forward to heaven when I'm done here. With God all things are possible and all He asks is faith in Him. It could have been a living hell going through this but with heaven ahead of me (and a loving wife) it was ok. Did I mention I had 13 tubes into my body when I woke up after surgery. A day at a time. Remember, the next hand you shake maybe the Masters. Thank you Jesus. 

    John-Seems U R N A normal recovery mode-Wt. loss will slow down!

     

    John – I chose to answer you here rather than to continue remarks under a posting that Ellie1229 started.  In summary, she said she had already educated herself, and just wanted a confirmation on things she already “knew”.  So in that regard, since you may have additional questions, I chose to send you a response and give you a topic line all your own.  It will be easier to find you and answer questions if you have more, if you have your own subject line. 

    So look here for my reply.  https://csn.cancer.org/node/312503

    Loretta