Esophageal Cancer Stage III, new person looking for other Stage III

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  • sandy1943
    sandy1943 Member Posts: 824

    Stage 3 EC story
    I was diagnosed in Jan of 2010, had six weeks of chemo (FU5)/radiation, and the Ivor Lewis surgery in May 2010. The chemo/radiation worked to make all traces of EC gone prior to the surgery. I had a pic line in my vein attached to a chemo pump. At no time did I suffer any side effects at all! No rad burn, no nausea, no fatigue, no hair loss. Post surgery was complicated by double pneumonia and acid reflux attacks. I was on a J-tube for nearly 4 months and in the hospital most of these months. The surgery didn't hurt at all oddly enough. The only significant suffering for me was an occasional reflux attack - I'd never had this before and the horrid taste and persistent burning which hung on for an hour was really the worst part of the entire EC journey. Once in a great while, I start to feel/taste a little reflux and it's as though I'm PTSD back to the worst time after surgery. The one remaining problem from the surgery is that I began a small size 4 and have since shrunk to a size 0.
    I have absolutely no appetite, hunger, or desire to eat whatsoever, so I literally have to force myself to eat a couple times a day. This summer, I was hospitalized five days with severe malnutrition and told to gain weight or they'd recommend a feeding tube. I liken my absence of appetite to someone who's lost her taste buds. I figure that this will be a problem for the rest of my life, but the real danger is that any sickness - even a flu bug - would tip me over since I have no "reserves". Short cuts like Ensure cause immediate dumping syndrome. I eat a cup of cashews every evening while I have 2 wines. The wine does
    stimulate a desire to eat somewhat. I'm happy to report that I've had six clean PET scans since the surgery and, other than the weight issue, I'm 100% and think of EC as a really bad dream I had. I never have identified with cancer (even in treatment, etc).

    I had to force myself to eat
    I had to force myself to eat after surgery, but my appetite was back after a couple of months. Even so I kept losing with no logical explanation except my metabolizm changed. I lost 99 pds, and was very skinny. I did have the weight to lose in the beginning. It's been five years and I've gained a whopping 14 pds back. I am a lot healthier now than before, so I don't really want to gain much more.
    I understand at size 0, you couldn't possibly stand to lose any more. The cashews and wine should help you turn the corner.
    Congratulations on the NED PET scans.
    Sandra
  • allisonwr
    allisonwr Member Posts: 11
    Hi Kristen,
    My dad was also

    Hi Kristen,

    My dad was also diagnosed with Stage III (T3N1M0) recently. Here is the update that I posted on my thread: Hello all, so here is an update on my dad. His cat scan showed the obvious "mild irregularities in the esophagus" (funny how it SOUNDS so benign), and two small, unremarkable lesions in the liver (presumably cysts). Also, his EUS shows a large tumor that has protruded through the lumen or outside of the esophagus. All in all, the oncologist is calling it Stage III (although the GI said that it is in between II and III). They think that it may only have spread to "one or two lymph nodes." So official diagnosis is T3N1M0. He has met with the radiation oncologist and will be starting chemo and radiation a week from this Tuesday on a regimen of cisplatin and taxol for 6 weeks before he gets an esophagectomy. Does anyone have any input on all of this? They told him that after two weeks of chemo and radiation, he will not be able to eat due to the tumor flaring up so much. I think they discussed a G-tube ot J-tube with him. From the imppression that I get from my dad, he thinks they sound pretty optimistic. I hope it is. We are trying to stay positive!"

    Please feel free to message me anytime. It sounds like a couple of people who have responded have very similar situations they are in.
  • SparkLife
    SparkLife Member Posts: 11
    allisonwr said:

    Hi Kristen,
    My dad was also

    Hi Kristen,

    My dad was also diagnosed with Stage III (T3N1M0) recently. Here is the update that I posted on my thread: Hello all, so here is an update on my dad. His cat scan showed the obvious "mild irregularities in the esophagus" (funny how it SOUNDS so benign), and two small, unremarkable lesions in the liver (presumably cysts). Also, his EUS shows a large tumor that has protruded through the lumen or outside of the esophagus. All in all, the oncologist is calling it Stage III (although the GI said that it is in between II and III). They think that it may only have spread to "one or two lymph nodes." So official diagnosis is T3N1M0. He has met with the radiation oncologist and will be starting chemo and radiation a week from this Tuesday on a regimen of cisplatin and taxol for 6 weeks before he gets an esophagectomy. Does anyone have any input on all of this? They told him that after two weeks of chemo and radiation, he will not be able to eat due to the tumor flaring up so much. I think they discussed a G-tube ot J-tube with him. From the imppression that I get from my dad, he thinks they sound pretty optimistic. I hope it is. We are trying to stay positive!"

    Please feel free to message me anytime. It sounds like a couple of people who have responded have very similar situations they are in.

    Hi Allison,
    Hi Allison,

    My dad just had the Ivor-Lewis Esophectomy surgery on Thursday (a month after finishing chemo/radiation) and is currently recovering at Hopkins. As I talked about above, my dad experienced lose of appetite, grumpiness, hoarse voice, anxiety, loss of taste and tiredness during his chemo/radiation. As a part of the surgery, he had a J-tube put in which he now gets protein "shakes" through.

    Recovery after the surgery seems to be a long road with a 2-week hospital stay. Can anyone else describe their Recovery path? I think the thing he doesnt' like the most about the post-surgery recovery is that he can't have water or anything by mouth for 7 days post surgery so that the esophagus can stay dry and heal. So I think your dad should prepare himself ahead of time to expect a week without water (although he will be getting fluids via IV and nutrition via J-tube).

    The doctors removed many lymph nodes and sent them and the removed portion of the esophagus to pathology so we are awaited those results. He is being moved out of the ICU today. He is trying to get up and walk as much as they will take him and trying to clear his lungs of fluid.

    Allison - tell you Dad to keep up his strength and nutrition throughout chemo/radiation and prior to surgery so he can use that strength to recover from the surgery.
  • SparkLife
    SparkLife Member Posts: 11
    SparkLife said:

    More about Treatment
    Hi everyone,

    My dad has officially started treatment this week. For the chemotherapy part, he is involved in a clinical trial which looks at a methylated CHFR gene as a potential biomarker which if a person has, the cancer may show greater sensitivity to Paciltaxel. Since he does have the methylated gene, he is receiving Paciltaxel and Cisplatin as part of the study.

    Interestingly, there is another person from PA who started treatment the same time as my dad and who has the same cancer, the methylated gene and is enrolled in the same clinical trial. Talk about coincidences.

    My dad has been very impressed by the high level of care at Hopkins and is very happy to be receiving treatment there.

    Things seem to be going well for the first week and he is feeling good.

    How is Dave doing? What was his recovery like? My dad is currently recovering from his surgery. They just moved him out of the ICU today and into a recovery room.
  • SparkLife
    SparkLife Member Posts: 11
    SparkLife said:

    Hi Allison,
    Hi Allison,

    My dad just had the Ivor-Lewis Esophectomy surgery on Thursday (a month after finishing chemo/radiation) and is currently recovering at Hopkins. As I talked about above, my dad experienced lose of appetite, grumpiness, hoarse voice, anxiety, loss of taste and tiredness during his chemo/radiation. As a part of the surgery, he had a J-tube put in which he now gets protein "shakes" through.

    Recovery after the surgery seems to be a long road with a 2-week hospital stay. Can anyone else describe their Recovery path? I think the thing he doesnt' like the most about the post-surgery recovery is that he can't have water or anything by mouth for 7 days post surgery so that the esophagus can stay dry and heal. So I think your dad should prepare himself ahead of time to expect a week without water (although he will be getting fluids via IV and nutrition via J-tube).

    The doctors removed many lymph nodes and sent them and the removed portion of the esophagus to pathology so we are awaited those results. He is being moved out of the ICU today. He is trying to get up and walk as much as they will take him and trying to clear his lungs of fluid.

    Allison - tell you Dad to keep up his strength and nutrition throughout chemo/radiation and prior to surgery so he can use that strength to recover from the surgery.

    Cancer free!

    My dad received the pathology reports back from the lymph nodes and the portion of the esophagus they removed and the results were that everything was all clear of cancer!! We were so happy to hear the good news and such a relief!!

    Recovery is still a long road though. My dad came down with pneumonia and needed a long course of IV antibiotics. He is currently at a step-down facility that helps patients recover from surgery (in PA). Hopefully by the first week in January he will be able to get the feeding tube out and return to a more normal lifestyle. He will soon be able to eat soft foods by mouth so we'll see how that goes. But even on a liquid diet, he's still experiencing the "dumping" syndrome. Did anybody else have this problem too? Were there certain foods that we better tolerated than others?

    I was also wondering if anybody had trouble sleeping at night after going through this life change?

    Happy Holidays,

    Kristin

  • paul61
    paul61 Member Posts: 1,391 Member
    SparkLife said:

    Cancer free!

    My dad received the pathology reports back from the lymph nodes and the portion of the esophagus they removed and the results were that everything was all clear of cancer!! We were so happy to hear the good news and such a relief!!

    Recovery is still a long road though. My dad came down with pneumonia and needed a long course of IV antibiotics. He is currently at a step-down facility that helps patients recover from surgery (in PA). Hopefully by the first week in January he will be able to get the feeding tube out and return to a more normal lifestyle. He will soon be able to eat soft foods by mouth so we'll see how that goes. But even on a liquid diet, he's still experiencing the "dumping" syndrome. Did anybody else have this problem too? Were there certain foods that we better tolerated than others?

    I was also wondering if anybody had trouble sleeping at night after going through this life change?

    Happy Holidays,

    Kristin

    Dumping syndrome is common post surgery

    Kristin,

     

    Unfortunately "dumping syndrome" is very common for those of us who have had an esophagectomy. It is most pronounced the first four months post surgery and gradually improves over the next few months. It does however, stay with us indefinitely with certain food combinations. The foods that trigger dumping tend to be specific to each individual but some common food triggers post surgery include:

    1. Foods that are high in sugar content

    2. Foods that contain a concentration of simple carbohydrates

    3. Dairy products

    4. Foods that contain certain sugar substitutes (e.g. sorbital)

     

    My process for avoiding dumping includes:

    1. Don’t drink large amounts of liquids one hour prior to or after eating

    2. Drink very little white meals (sips only)

    3. Chew thoroughly and eat slowly (put down fork between bites to slow down)

    4.  Avoid sugar, spicy foods, rich sauces, dairy, fatty foods.

    5. Sit upright and rest for at least 30 minutes after eating

     

    Here is an excellent diet reference to help with diet choices:

     http://www.upmc.com/patients-visitors/education/nutrition/Pages/dumping-syndrome-diet.aspx

     

    The good news is for most people it is temporary,

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB

    Ivor Lewis Surgery  12/3/2009

    Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU

    Three Year Survivor

  • sandy1943
    sandy1943 Member Posts: 824
    SparkLife said:

    Cancer free!

    My dad received the pathology reports back from the lymph nodes and the portion of the esophagus they removed and the results were that everything was all clear of cancer!! We were so happy to hear the good news and such a relief!!

    Recovery is still a long road though. My dad came down with pneumonia and needed a long course of IV antibiotics. He is currently at a step-down facility that helps patients recover from surgery (in PA). Hopefully by the first week in January he will be able to get the feeding tube out and return to a more normal lifestyle. He will soon be able to eat soft foods by mouth so we'll see how that goes. But even on a liquid diet, he's still experiencing the "dumping" syndrome. Did anybody else have this problem too? Were there certain foods that we better tolerated than others?

    I was also wondering if anybody had trouble sleeping at night after going through this life change?

    Happy Holidays,

    Kristin

    Kristin, What great news to

    Kristin, What great news to start the new year. Too bad, but the dumping is part of side effects from the surgery. It will get better, but I had to learn the foods that caused me the most problems.

    I've never had any problems sleeping, just adjusting to sleeping elevated. I stiil can't adjust to it, but it is neccesary to keep down acid reflux.

    May 2013 be filled with healing and continued good test results,

    Sandra

  • SparkLife
    SparkLife Member Posts: 11
    sandy1943 said:

    Kristin, What great news to

    Kristin, What great news to start the new year. Too bad, but the dumping is part of side effects from the surgery. It will get better, but I had to learn the foods that caused me the most problems.

    I've never had any problems sleeping, just adjusting to sleeping elevated. I stiil can't adjust to it, but it is neccesary to keep down acid reflux.

    May 2013 be filled with healing and continued good test results,

    Sandra

    Yellow BM

    Since I last wrote, a lot has happened. My dad had a few stays in the hospital for a lung issue that was due to the chemotherapy treatment. He lost 20 lbs. post-surgery and was on oxygen for awhile but slowly got better with steroids. He was only eating by feeding tube for about 6-8 weeks post-surgery and didn't want to take anything but liquids by mouth. They did do 2 endoscopies and I believe they stretched his esophagus. A few weeks ago, he really started to eat solids by mouth again and got his appetite back. His j-tube actually just fell out so now he is completely reliant upon eating by mouth to gain weight. He is doing well and gaining weight. 

    He did have a question for those who follow this blog. Since starting tube feeding his stool has been yellow. Even though he is eating normal foods now, his stool is still yellow and not the usual brown color. Did anyone else have this experience and/or do you know if this is something that just takes time to go away? Any info would be much appreciated!! 

     

    Thanks!

  • austina
    austina Member Posts: 1
    Stage 3b survivor

    I am a 61 year old male

    I was diagnosed in august 2012 with stage 3b esophageal cancer.  I had the most agressive chemo available and underwent radiation treatment at the same time.  One month after completion of that I underwent a radical resection surgery at Swedish Hospital in Seattle.  I was in the hospital in recovery for a total of three weeks.  Following that I went to a friends house for help as a caretaker.  The feeding tube was a nightmare and didnt work for me for several reasons.  The worst of which was my system would not tolerate any of the various types of stuff available.  Eventually we gave up on that altogether and I went to high calorie soups and pastas supplimented with protein bars.

    Chemo and Radiation were horrible.  I had a implant and a pump so that it was going in 24/7.  I also had a weekly infusion, and radiation treatment five days a week.  I live alone and there were times that I would go into cramps, pass out, wake up a day later with my face glued to the floor in...well it was ugly.  My Oncologist was useless.  I didnt even know what stage I was diagnosed with until after I had surgery and asked the surgeon.  I could go on and on about that jerk.  The surgeon at Swedish though is wonderful, and has taken over for me where the Oncologist dropped the ball. 

    Surgery was routine and I went through all of the waking up with a zillion pipes hoses and fittings hanging out of everywhere, and staff that would not leave me alone for more than an hour so that I couldnt get any decent sleep...pretty normal stuff in the hospital.

    I am now four months out of surgery and have had a hard time getting my system to process food normally.  I have a lot of pain in the small intestines after eating which lasts about an hour and I havent been able to gain back any of the weight I lost in this process.  I lost a considerable amount of weight.  I used to weigh 165 and I now weigh 104, mostly due to chemo.

    I have an appointment next week with the Surgeon to do a live barium swallow deal to see what is going on.  He suspects some adheasions and says that we will get to the bottom of it.

    My prognosis is excellent as they only found five living cancer cells left in the entire esophageal resection, no metastisis and no lymph node involvement.

    I am hopeful that this nightmare will end soon and I can get on with my life.

  • malady
    malady Member Posts: 6
    Stage 3 Esophageal Cancer

    I was diagnosed in Sept/2012 with esophageol cancer with 3 lymph nodes involved.  I had 5 weeks of radiation and chemo combined in Dec.    In Feb/2013 I had surgery (was 8 hours) and they said they removed all the cancer with good clear margins.      I now have to have a catscan and scope every 6 months but so far I am doing fine.

  • malady
    malady Member Posts: 6
    sandy1943 said:

    Kristin, I was diagnosed
    Kristin, I was diagnosed stage 111 w. local lymph nodes 4 1/2 yrs ago. I had chemo and the ivor lewis surgery in may 2008. I had some sick days, but was able to eat during my whole treatment. I didn't lose any weight before surgery. I lost a lot of weight following my surgery ( 99 pds) and it was a puzzle to the drs, because I did eat, just smaller meals. Because of this I had a difficult time regaining my strength.The main thing to concetrate on now, is to keep his weight up.
    We are here for you, with help and answers to the many questions you will have as time goes on.Our survivors and caregivers are very knowledgeable and have had on hand experience and can and will share information, that even healthcare workers aren't always aware of.

    The days ahead will not be easy. You and dad will be in my thoughts and prayers,
    Sandra

    I also had Ivor Lew Surgery.

    Like you, I did not lose any weight before surgery but have lost 25lbs since.     I seem to be holding there.    I was so glad to hear that you had lost that weight and are still okay.     Everytime I get weighed I get worried that something is wrong.     I have to have a scope & a catscan every 6 months now.

  • malady
    malady Member Posts: 6
    Backache after surgery for Esophageal Cancer?

    Has anyone had a backache following  Ivor-Lewis Esophectomy surgery?     I would really like to hear from anyone to find out if this is normal and if so how long does it last.

  • paul61
    paul61 Member Posts: 1,391 Member
    malady said:

    Backache after surgery for Esophageal Cancer?

    Has anyone had a backache following  Ivor-Lewis Esophectomy surgery?     I would really like to hear from anyone to find out if this is normal and if so how long does it last.

    Yes...and it does get better with time

    I had a backache on a regular basis for about a year after my Ivor Lewis surgery. Initially my back would ache just under my right shoulder blade after using my back muscles for any activity for a period of 10 minutes for more. Even sitting upright in a chair without a back would cause my back to ache, or walking any distance. After about three months this improved to the point where it would take some repetitive activity for 20 minutes or more to cause my back to ache (like raking leaves in the yard).  Over a period of two years it gradually got better. But now, almost four years after surgery, it is almost gone. I still find that when I play 18 holes of golf my back will start to ache a bit during the last few holes but it does get better.

    Best Regards,

     Paul Adams

    Grand Blanc, Michigan
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor 

     

  • malady
    malady Member Posts: 6
    Backache after Ivor Lewis Surgery

    Thanks, good to know I am not alone.

  • runabe
    runabe Member Posts: 48
    edited December 2016 #36
    Stage 3

    About 4 years ago my wife was diagnosed with stage 3 We live in NJ close to NYC We went to Sloan in NYC After raidation and kemo Linda was opperated on They removed most of the esophagus and did a gastric pullup Linda wasa big girl weighed about 170 before surgery She went down to 125 and is now about 138 or so She was very lucky So do not loose hope there is a solution to this If we did not opperate she would have not made it

  • malady
    malady Member Posts: 6
    Josie60 said:

    I'm a stage III
    I'm 60 and female. I was dignosed with stage 3 in March. I had 6 lymph nodes along the esphogus and one node external of the esphogus involved but no evidence of met in other organs. I had 6 weekly treatments of chemo ( taxol and carboplatin) and 28 radiation treatments. My surgeon scheduled THE surgery for June 5. The full esophagus and a portion of my stomach was removed. I had some minor complications after surgery ( a leak in the throat) but overall the surgery went well. The initial pathology report is very positive that the cancer was killed by the treatments. It definitely a life style change but now at almost 12 weeks I am starting to feel much better.

    The chemo and radiation started to really affect at a out 4 weeks. I lost all interest in eating and couldn't really get anything down anyway. Even swallowing water hurt. A nasal feeding tube was installed which helped although it gave me problems. I was on a j- tube for feeding for about 9 weeks after surgery.

    This place has good people and good information. This is such a nasty,horrible diesease to have. It's sometimes hard to read these posts and keep a positive attitude but I keep working on the positive.

    Throat Leak?

    Can you tell me how you discovered the throat leak?     I have laryngitis and they say it could be due to acid reflux.     I read about your "throat leakage"and now I am curius and wonder if I have the same problem?

  • malady
    malady Member Posts: 6
    lymph node cancer not Laryngitis - Stage 3 Esophageal Cancer

    I just developed what I thought was laryngitis.   My voice has been raspy for about 4 weeks.    I just had my 6 month check up, catscan and a scope and found out the cancer has returned to my lymph nodes and one is pressing against my voice box and I also have a spot on my lung.     I now have to see the radiation and chemo doctors.       Anyone have support for me for this?

  • Balajicodihalli
    Balajicodihalli Member Posts: 1
    Enquiry

    Sir,

    Hope you are doing well. Just wanted to know how did the surgery and the chemotherapy go.

    my father in law 65yr has also been diagonised with stage2.

    if you can share your experience it would be very helpful.

    thanks

    balaji 

  • Rxk484
    Rxk484 Member Posts: 3

    I'm a stage III caregiver, Kristin
    and would be glad to tell you about our experiences thus far. Dave was dx in June of this year, just completed chemo and radiation and is scheduled for surgery on October 8th at Hopkins in Baltimore. Depending on where you are in Penna you might want to consider Hopkins, they have an excellent, excllent EC program there. I can't say enough good things about the care Dave is receiving there. We're about 3 weeks post chemo and almost 10 days post radiation. It's still difficult, he has stomach pain, still can't eat solid foods, and has a rash and peeling of his hands, but has avoided serious side effects that could have landed him in the hospital. He is sooo done with this! (aren't we all?) but is optimistic that he'll have a positive outcome. If I can help you in any way please let me know. You'll find a wealth of information here, you've come to a great resource of caring, compassionate people who have walked the walk.

    Stage 4 B throat cancer

    hi Kristin my name is Rod was was DX 2 weeks ago and has come on me quickly. I am 62 years old, look 20 years younger and have not been ill with a cold or Flu for as long as I can remember. Wow! Now I have a fight with the devil. Another person blogged if there were any others with stage 4 B throat cancer and received no response. I guess I'm special.lol