Esophageal Cancer Support Group
Esophageal cancer is malignancy of the esophagus. There are various subtypes. Esophageal tumors usually lead to dysphagia (difficulty swallowing), pain and other symptoms, and is diagnosed with biopsy. Small and localized tumors are treated with surgery, and advanced tumors are treated with chemotherapy, radiotherapy or combinations.
My husband was also recently diagnosed with EC. It was discovered during a routine upper endoscopy for his Barret's Esophagus. We consulted with two surgeons at Robert Woods Johnson who work as a team for THE surgery. But my husband first had to have a PET scan & an endoscopic ultrasound. Unfortunately, these tests revealed lymph node involvement in the thoracic & abdominal region, tho no metastisis was confirmed. The doctors said surgery was out, and recommended we find a local oncologist for chemotherapy.
Upon reading the test results, the local specialist we went to concurred with the surgeons. My husband will be starting chemo next Friday - 6 rounds of one week on & three weeks off.
Has anyone out there been in this situation? I saw what chemo did to my mother when she was being treated for lung cancer, & it was awful. How have you folks responded to it?
Upon reading the test results, the local specialist we went to concurred with the surgeons. My husband will be starting chemo next Friday - 6 rounds of one week on & three weeks off.
Has anyone out there been in this situation? I saw what chemo did to my mother when she was being treated for lung cancer, & it was awful. How have you folks responded to it?
Some people have had the surgery after chemo even though they were initially told it was inoperable. You can read my journal to see how I felt about chemo...not bad, actually pretty good really1:-). I also had Proton Beam Therapy with Dr Cox at MD Anderson. I highly recommend it. I had nodal involvement initially as well. Now I am 100% cancer free according to my last PET scan. Pretty good I'd say!
Welcome to the Group!
--Deborah
Proton beam therapy is available at U of Penn, wish we had known about it when husband was going through therapy. My husband Jeff was diagnosed in May with stage 2 EC. He had 6 weeks of Chemo and radiation at UofP, then surgery at John Hopkins. My husband is going through post op Chemo as a precaution, he had a clean pathology report after surgery. If you are in the Philadelphia region and need names of doctors let me know.
Best
Niki
Bari
How's your husband doing? How are you doing? We are thinking of you and keeping you in our prayers.
Margi
I've hardly had a free minute to get online. My husband started chemo last Fri. He received infusions from 9am - 6 pm, one chemical, then another, plus shots. He came home with a third chemical that's been infusing into his port for the last week. He gets detached tomorrow, then has a 3 week break before the cycle begins again.
He's been pretty non-functional since Fri - severe body aches & fatigue. Don't know if it's the chemo, or the cancer advancing, or both. Hopefully he'll perk up soon.
Bari
We are sure thinking about you and your hubby. We know how scary it is. Everyone's story is different here, but the fear is the same for all of us. Fear of the unknown, I guess.
One thing I've learned so far in this journey is to adjust meals for Mike - it got to the point that he really was having trouble getting food down. Red meat went out the window about a month ago (other than hamburger) and fish, chicken and seafood were much easier for him. Surprisingly, pasta was ok too. Soups, stews, mac and cheese, eggs. Bread became a no-no.
It's such a huge learning curve for caregivers. I think they should award us our medical degrees after going through something like this, don't you?
Hugs to you and your hubby. Fingers crossed that chemo does its job for him!
Margi
I to was diagnosed with inoperable EC over a year ago. Like your husband, it was found in a routine physical examination. I had no indication of a problem.
I started a 6 month (every other week) chemo session. Afer the 6 months a PET scan said the tumor had not grown. While it might not have grown, it was getting increasingly difficult to swallow. So, I had a PEG Tube installed. This has worked very well and, where the doctor says it is appropriate, I would recommend it over a J Tube. As others have siad on this topic, my oral food intake was restricted. One of my main concerns was that I would get to a point where I couldn't even swallow water or saliva! That scared me more than the cancer! So, I had a stent installed. The stent has worked very well and I can eat almost anything as long as I chew it well. Through all of this, I lost about 30 pounds and I was skinny to begin with! I found a great weight-loss program on the internet with which I can track my daily caloric intake which can also help you gain weight!. It is very difficult maintaining a 2750 calorie per day intake by eating real food and I have become more reliant drinking prepared nutrient drinks like Boost or using the PEG for Jevity. I have now gained back about 5 pounds.
A month after the stent was installed, I had another PET scan run. It found that there was a slight increase in the tumore size, so I have just started my second round of chemo. Same proposed schedule - 6 months of every other week (and another PET after 3 months.
I have been fortunate in that the side effects of the chemo have not been as bad as many people experience. Fatigue being the most difficult. The other, from the first session, is neuropathy - a numbness in my feet and hands. This was attributed to one of the drugs in the first chemo treatment - Oxaliplatin (sp?) But the neuropathy is more of an annoyance than a problem.
It is now too late to make a long story short, so I will end this with - "Inoperable" doesn't mean there is nothing to be done. Keep your spirits up, and do not pay attention to statistics! Remember, your husband is a statistic of one. The rest of the numbers are not important!
Last, but by no means least, my wife has been a pillar of strength for me to lean on through all of this! It sounds as though you are for your husband, too.
Good luck,
Ivan8
Bari
Has your doctor/oncologist mentioned a feeding tube? I would be down to skin and bones if I hadn't had one installed. As I said in my post to Bari, I have a PEG Tube and am very satisfied with the results. It is out-patient surgery with a week or two of post-operative discomfort. Downside? You don't get the pleasure of tasting food!
That's the secondary reason for why I went to the next step of having the stent installed. Between the PEG and the Stent, I keep my calorie level up AND get to taste real food!! (That was a big deal when they brought the McRib back! :-))
Ivan
Thanks for sharing your story. Yes, Mike got his feeding tube bag installed at surgery and they started feeding him through it yesterday. We've been told he will come home with it, most likely for about 6 weeks.
My husband got the same diagnosis as yours at the end of June of this year (Stage IV, near and claviculart lymph involvement, but no other organs.) His symptoms were esophageal spasms and difficulty swallowing.
He is now on his 6th round of chemo. After just the first week, his swallowing problems went away. He has had a CT and a PET and both have shown improvement. He is on a 3 week cycle: Day 1 IV Oxaliplatin; Days 1-14 oral Xeloda then week off then repeat. He has not had any serious side effects. The Oxaliplatin universally causes sensitivity to cold for awhile. And there is some fatigue. He was able to take a break between rounds 5 and 6 for us to take an 18 day vacation. He did great--able to hike around, eat tons of food, etc.
I hope your husband's treatment is going well. Ask if you have any questions. One thing we learned is that hydration is SO important when you're on chemo. (Need at least 8-10 glasses of non-caffeine liquids a day.) And if you get behind, you can't catch up by drinking, but will need to get IV fluids. After the first time, it make a believer out of my hubbie.
Angie
Yes, Mike will be coming home with a feeding tube that will stay in for about a month, they've told us. Mike is a little guy to start with - he went in to this surgery at 154 pounds and we weighed him today - he is 149 now. It's really important for us to be able to mitigate the weight loss, so I'm thinking the feeding tube will really help us do that. He's tolerating food very well so far.
Thanks for the advice and for sharing your story. You give us strength!
Margi
I can fully understand the weight problem.
I found a Weight LOSS program on the internet that can also help with GAINING weight. It has worked well for me. Go to http://www.myfitnesspal.com.
You can play with the calorie intake until you find the one that works for your husband. After that, you just keep posting what you ate for each meal and it keeps track of your intake and tells you how much weight you would gain after 4 weeks on that calorie level.
It may sound complicated as I explain it here, but the site is really very user friendly.
Consider nutrient drinks like Ensure or Boost Plus to fill out the required daily intake. I know that I can not eat as much real food as I need to gain weight. The nutrient drinks are all that make it possible for me.
Best regards,
n8
Iva