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

jaycc
Posts: 127
Joined: Jul 2012

Post for Kristin,
Hello all, this is a starting post for Kristin, (PA area) her father is in testing, so far the info includes:
He is 60-65 and was diagnosed at stage III. (w/ suspicious local lymph nodes but no distant metathesis) and has been told he is a candidate for surgery after chemo/radiation.
Kristin is looking to hear from other Stage III. (ps William I sent her some of your links on information, I hope you don't mind).

Bermudagirl
Posts: 120
Joined: Jun 2012

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.

SparkLife
Posts: 11
Joined: Aug 2012

Hi Bermudagirl,

My dad is being treated at Hopkins in Baltimore. He just completed the initial staging evaluation and will begin treatment soon (chemo/radition followed by surgery). If there are certain doctors that you like or any information at all about lodging, type and length of chemo/radiation, nutrition, I would love to hear it!

SparkLife
Posts: 11
Joined: Aug 2012

I forgot to add that this is Kristin.

Bermudagirl
Posts: 120
Joined: Jun 2012

I'll be glad to share all I can with you. Hopkins is wonderful, Dave's doctors are Dr. Kelly for chemo (have you met him yet, darling Irish fellow..) Dr. Hales for radiation, and Dr. Yang is his surgeon.

We live locally, but there is a Ronald McDonald type house right across the street for out of towners. Otherwise there are hotels in and around the Baltimore area. I'd stay away from those at the Inner Harbor only because they are right downtown and alot more expensive than the suburbs. You might want to look at some in the White Marsh area, like Residence Inn type and its 20 minutes out from the hospital.

Did you do the all day "seminar" evaluation? We were most impressed with that. We started our journey in early June. Like I said it hasn't been easy, but we are plugging away. Dave and I met after each leaving long term unhappy, marriages. We have been together for 6 years, are not married, and live about 45 minutes apart. It has been challenging at times to say the least.

Feel confident that you will have excellent doctors and care at Hopkins. Dave has chosen to have the THE esophagectomy, but you will learn about other options like the MIE. I feel pretty confident in advising you through alot of this stuff, but there are many more experienced people on this forum who you will lean on for support and information. You have definitely found a good place to be.

Best wishes to you and your dad and family. Feel free to PM me and I can give you my email address if you'd like.

Sandy

P.S. Where in PA are you?

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

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.

SparkLife
Posts: 11
Joined: Aug 2012

Hi Josie and Sandy,

Since my dad's brother also had this type of cancer, they are looking into genetic links and if certain chemo drugs respond better to genetically linked-cancer. As his daughter, this is important for me to know as it may be something that I am pre-disposed to get later in life. Does anybody have any relatives who had this same type of cancer as well?

My dad had his official all day seminar to discuss his treatment path last week at Hopkins. His cancer is an adenocarcinoma and in the lower 1/3rd of the esophagus so after chemo/radiation, he will have surgery to remove a part of the esophagus and the stomach and then connect the two together.

It seems like a j-tube is the best option to get optimal nutrition during the chemo/radiation or even after surgery. Do you agree? What foods did you find were the most beneficial to you (Ensure, soups, high-calorie soft foods, etc.)?

In addition to not wanting/being able to eat, were you physically tired or affecting in any other way by the chemo/radiation? How long were each chemo/radiation treatment (few hrs)?

Sandy, since we live near Philly, my dad is looking for housing while he is at Hopkins. Preferrably on-campus but if not, then something with a shuttle to the hospital. He is working with someone down there to arrange housing but any suggestions of lodging you recommend would be very much appreciated. I will have to look into the Renaissance Inn you mentioned.

Josie - I am glad to hear that you are feely better and I appreciate all the information your sharing. This is extremely helpful to understanding the process we are about to go through.

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Kristin,
Almost 3 yr survivor of stage III with positive lymph node. Had the 3 incision Ivor Lewis and post op chemo plus the pre surgery chemo and radiation. It can be done. I was 65 at the time. You will hear much info from others, just wanted you to know it can be done and there are many like myself on this board who will be glad to share their survival stories. take care,
Donna70

Bermudagirl
Posts: 120
Joined: Jun 2012

Hi Kristin,

Dave had continuous 5FU for 4 weeks, with an every other week infusion of Oxaliplatin. He had radiation daily (5x week) for 5 weeks. He did not lose his hair, he did lose about 20 pounds, and if you were to see him from across the room you wouldn't know he was sick. He stopped eating solid food about 3 weeks ago, but up until then he even had a reuben sandwich about 3 weeks into treatment.

I'll give you a rough time line so you might know what to expect:

6.14.12 Diagnosed at local hospital with Stage III EC (through an endoscopy)

6.26.12 Had PET scan

6.27.12 Met with team at Hopkins Bayview

7.3.12 Had repeat EUS (endoscopy) to just verify that it was truly an esopahageal
cancer and not stomach cancer. There was a little bit of confusion about that.

7.12.12 Pulmonary function test, meet with chemo team (Nancy Tsottles and Dr. Kelly)

7.16.12 Port implanted (a long procedure only because he got bumped, got to hospital at 1:00. didn't leave til 9ish. LOTS of time waiting around to have it done)

7.18.12 First radiation

7.19.12 First chemo

While it seems like forever to get the ball rolling, in actuality it was only about a month, and they need to get all the testing done first.

I guess your dad would be planning on a 5 week stay in Baltimore if he has radiation. I would think that Hopkins' team would have the best suggestions for a place to stay. Dave did drive himself back and forth each day for treatment, and its about a half hour away from his home. If you can find a place to stay that is a suite type arrangement I think he'd be much more comfortable. The only problem is they may not have a shuttle down to Hopkins.

http://www.marriott.com/hotels/travel/bwiwm-residence-inn-baltimore-white-marsh/

I can do a little more digging and see what I can find.

I know this is completely overwhelming at this point, but hang in there. And I will be more than happy to help you in any way I can.

Sandy

P.S. And this from Hopkins' website about housing options:

http://www.hopkinsmedicine.org/contentInclude/2012-Accommodations%20list%20for%20patients.pdf

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

I'm sure a lot depends on what is chosen and method of delivery but I had an IV placed in the hand each week. There were some "prep" drugs given first to control side effects. That took about 45 minutes. The chemo drugs themselves took an hour each. There were a couple weeks where I had potassium IV since that had dropped in my blood and fluids since I got dehydrated. Those added another hour. The fluids IV helped with my energy level. The triogly Radition took less than 30 minutes, the treatment itself was less than 5 minutes.

Nutrition I didn't do anything special partly because it was so hard to swallow anything. I did try using the Boost but by the end of treatments I couldn't get that down I don't know if it was physical or psychological. The nasal feeding tube though uncomfortable and a lot of a trouble, was a godsend as I hadn't really eaten anything for a week when they put it in.

My dad died from an undifferentiated cancer 20 years ago.. It was found on his spine but we think it originated in the lungs since he had been a smoker. But there has been no other instance of cancer in our extended familynthatbi know of.

My surgeon removed the entire esphogus stating that EC has a tendency to reoccur in the remaining tissue later, he called them skip lesions. It made sense to me if it improved my chances of survival.

I still learning a lot and how to live this new life so I too have many questions for survivors.

Starlight11
Posts: 8
Joined: Sep 2012

My mom is Stage 4 ec and she had terrible acid reflux for years. Her doctor recommended I get scoped. I never had acid reflux but did have a persistent cough. I was told I have hiatal hernia and short segment Barrets esophagus and they put me on omneprazol and I have to go back for another scope in November. Talk to your doctor about getting an endoscopy. There could be a genetic predisposition.

gugi1965
Posts: 16
Joined: Nov 2012

My husband was diagnosed in Aug. of 2010 with stage 4 esophegus cancer and I am sure that all the acid reflux he had for over 10 years caused it. Nobody in his family that he is aware of had it. If I was you I would get scoped. I tell people all the time if you have suffered over 5 yrs with acid reflux please get checked. The worse thing about this disease is that it is usually too late by the time they figure it out. We went to see the dr. all the time and they just didn't order the right tests. Finally I pushed to see a gastro dr who knew right away what the problem was. Well, tell my husband all about late detection. If I can save just one family and life from going thru this horrible nightmare, maybe it will be worth it. I have done so much research on this disease my head hurts. The countries that are prevalent with this disease are China,and Mexico. Go figure that is where the spicy foods come into place. The US is slowly becoming more aware of this but still that little purple pill (nexium) is what the Dr's prescribe. It only masks the true disease and they won't tell you that. My prayers go out to you and your family. I ca only tell you what I have done and that is lots of praying and POSITIVE POSITIVE POSITIVE outlook no matter what! God bless you.

malady
Posts: 6
Joined: Sep 2013

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?

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

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

SparkLife
Posts: 11
Joined: Aug 2012

Hi everyone,

Sandy - My dad will also be treated by Dr. Hales and Dr. Kelly at Hopkins. I believe he will have a different surgeon than Dr. Yang, but they are in the same group.

Sandra - Thanks for joining the conversation and I'm glad you are able to share your story with us. My dad has been eating smaller meals throughout the day so that he can get used to this new diet post surgery.

His treatment begins in two weeks and has made lodging arrangements to stay near Hopkins for the duration of his chemo/radiation. I believe he is getting 25 sessions of radiation and weekly chemo treatments (although we still are waiting for the results of the genetic test they did to see if he has a rare gene which certain chemo drugs will respond better to).

My dad has been reading the posts and has really appreciated everyone sharing their stories and their support for him as we begin treatment. It is nice to hear individual experiences in addition to the information given to him by the doctors as each person's situation is different.

Please keep us in your thoughts and prayers and we will do the same for you!

Kristin

SparkLife
Posts: 11
Joined: Aug 2012

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.

Bermudagirl
Posts: 120
Joined: Jun 2012

Glad that your dad's experiences have been positive so far. As you know we have had nothing but good things to say about Hopkins. Dave's tumor was not methylated, so he had 5FU and oxaliplatin. As it was explained to us being methylated or not was neither "good" nor "bad", just what it is! And humorously Dave had to drive from Hopkins out to the hospital that did the inital endoscopy to get his own patholgy as GBMC had been dragging their heels on sending it down. (Hospital was only 20 minutes away!) We needed it typed so they could start appropriate chemo.

Meeting with both Dr. Kelly and Dr. Yang this Friday in preparation for surgery on the 8th. Dave's PET scan was done on Monday and he had great response to the chemo and radiation (5 weeks of hell but so worth it!). Here's to your dad having the same results! Keep us posted.

SparkLife
Posts: 11
Joined: Aug 2012

This is my dad's 5th and final week of radiation. He has been feeling well enough to take the train home each weekend from Baltimore. His voice is hoarse, face is puffy (presumably from the steriods) and is his throat is beginning to get a little sore. From what he's told me, he is not in physical pain aside from the sore throat but does not sleep alot b/c he is going to the restroom all the time (from I.V. fluids given twice a week+drinking lots of water). From his bloodwork, his immune system and kidney function are good. He said he also lost his sense of taste last week and not as hungry so eating is more of a scheduled event than hunger related. He gets grumpy frequently and he feels very peppy at times and other time he is very tired. Quite a roller coaster.

Bermudagirl - How did Dave's surgery go? We are hoping my dad will be eligible as well for surgery in mid to late november. He has a PET scan the 2nd week of November. We will know more then.

Esophageal cancer was recently featured on Dr. Oz as America's fasting growing cancer. There are a few good videos from the Dr. Oz show about this type of cancer. He mentions Tangerines as an anti-esophageal cancer food. He also talks about foods to avoid if this type of cancer runs in your family (mints, tomatoes, soda, beer, etc.) I found it interesting.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

It sounds like dad has done fairly well with treatment. Everyone is different. I understand the eating out of neccesity, not wanting to. I lost my appetite but not taste.

I missed the dr. Oz show on EC. wish I had seen it.

He'll get to feeling a lot better during the break in treatment.

Praying for good Pet scan results,
Sandra

paul61's picture
paul61
Posts: 1090
Joined: Apr 2010

Sandra,

If you would like to watch the segments on esophageal cancer that were done on the Dr. Oz show they can be found on his web site here:

Click Here for segments on esophageal caner

Click on "View Video" to see the TV segment.

There are a number of segments done over several shows.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

SparkLife
Posts: 11
Joined: Aug 2012

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.

malady
Posts: 6
Joined: Sep 2013

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.

crystalbay
Posts: 39
Joined: Aug 2010

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).

SparkLife
Posts: 11
Joined: Aug 2012

Hi Crystalbay - Thank you for sharing your journey with EC. I am so glad to hear that your scans are clean.

My dad has finished chemo/radiation and had his PET scan last week and it showed that the cancer did not spread anywhere. He received cardiac clearance and is scheduled for surgery Nov. 29th. Since the chemo/radiation treatment, his hair has been continuously falling out, he's tired and went to the E.R. for a collapsed lung which required an almost 2 week hospital stay. On the bright side, he received warm cooked meals in the hospital on a regular basis which has helped keep his weight steady and had nurses to help him around the clock. He does have to eat according to a schedule because he lost his appetite and sense of taste.

We're looking forward to surgery next week and praying that all goes well.

Happy Holidays,

Kristin

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

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's picture
allisonwr
Posts: 11
Joined: Nov 2012

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
Posts: 11
Joined: Aug 2012

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
Posts: 11
Joined: Aug 2012

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's picture
paul61
Posts: 1090
Joined: Apr 2010

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's picture
sandy1943
Posts: 883
Joined: Jun 2010

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
Posts: 11
Joined: Aug 2012

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
Posts: 1
Joined: Apr 2013

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
Posts: 6
Joined: Sep 2013

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
Posts: 6
Joined: Sep 2013

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's picture
paul61
Posts: 1090
Joined: Apr 2010

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
Posts: 6
Joined: Sep 2013

Thanks, good to know I am not alone.

runabe
Posts: 53
Joined: Aug 2009

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
Posts: 6
Joined: Sep 2013

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?

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