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

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.

Hopkins in Baltimore
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 said:

This is Kristin
I forgot to add that this is Kristin.

Hi Kristin!
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 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.

Genetics, Nutrition, Other side effects and Lodging
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 said:

Kristin, almost 3 yr survivor
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

Chemo and radiation
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 list for patients.pdf

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

SparkLife said:

Treatment
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

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.

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.

Hi Kristin
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 said:

Last Week of Chemo/Radiation
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.

It sounds like dad has done
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

Starlight11 said:

Genetics
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.

esophegus cancer
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.

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).

Journey Continued
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