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

crystalbay said:

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 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 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

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

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.

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 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 

 

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

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?

Bermudagirl said:

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