New to board

Wish I could
Wish I could help and answer your questions, but I'm also an asked, not ready to answer yet. I do wish you the best. I know my brother Jim will be very interested in your progress since he was just diagnosed with EC and will be starting the series of therapies soon. It sure does sound encouraging that he is doing so well post op.

I read a little about Marinol for nausea, it seems it is a pill form of the well known stuff that President Clinton did not inhale. I don't know how well it works, we haven't reached that point yet. I would think many others here can answer that better than I. Your doctor can prescribe it if you ask.

I do wish you luck and pray that when your husband is done with his treatments, he can use what he's learned to answer our questions for a long long time.

Rob

Hobbssy

I had chemo and radiation in Nov/Dec and then the Ivor Lewis surgery April 15. The Jtube was removed after about 6 weeks, and I went back to work part time in June, full time in July. I continued to lose weight until about 2 or 3 weeks ago. I feel I'm stil recovering; I don't have the energy/stamina I used to. But, there's no evidence of cancer and I can eat just about anything in small doses.
good luck to you
debbie

JimsBrother said:

Wish I could
Wish I could help and answer your questions, but I'm also an asked, not ready to answer yet. I do wish you the best. I know my brother Jim will be very interested in your progress since he was just diagnosed with EC and will be starting the series of therapies soon. It sure does sound encouraging that he is doing so well post op.

I read a little about Marinol for nausea, it seems it is a pill form of the well known stuff that President Clinton did not inhale. I don't know how well it works, we haven't reached that point yet. I would think many others here can answer that better than I. Your doctor can prescribe it if you ask.

I do wish you luck and pray that when your husband is done with his treatments, he can use what he's learned to answer our questions for a long long time.

Rob

Hi Rob
I just had to tell
Hi Rob
I just had to tell you I looove this profile pic! What an adorable kitten.
Tina

Welcome
Hello Patti and your husband to our ec discussion board family. I was a caregiver for my dad. He unfortunately passed away from ec in March. Your husband's story is quite common, and sounds like he is coming out of the woods slowly but surely! Tell him to take it easy, not too much too soon. I was glad to read that he is grazing all day. That is how he should be eating. What kind of things is he eating? Maybe they need to be higher in calorie? Watch too much sugar and dairy after surgery. The new stomach can not tolerate too much of this. As far as his nausea, have him take his anti nausea meds around the clock. Do not wait to take them. If he waits until he is already feeling sick, they will not work. Emend is a very popular, good working anti nausea med. It is ok that he takes several naps throughout the day. This is good for him. He is recovering from major surgery. It should take several weeks to months to totally recover. Remind him that slow and easy wins the race! Everyone recovers at a different pace. He is an individual, not a statistic. I will be thinking and praying for both of you. Keep in touch!
Tina

HI Patty
Like your husband, mine was diagnosed in Feb 2010 and had his surgery June 2010. He only has the abdominal incision and the neck incision. I know it's not the Ivor Lewis, I think it was the THE. He just turned 36 when he was diagnosed T3N1MO. He completed chemo and radiation prior to surgery. He did not need any chemotherapy after surgery. Healing after surgery was and is still a slow process. He did have a few complications with jaundice and they had to reopen his abdominal incision which I have been packing twice a day since he got out of the hospital. At this point ( And I can't believe its already been 2 months since surgery) he is eating anything he wants to, just in much much smaller portions. He has lost almost 60 lbs but he is eating, healthier too now days. I couldn't tell you how many calories he eats a day, but he does eat frequent small meals. He had some weight to lose anyway prior to surgery so it may be why its also coming off so fast. The doctor said its normal and expected him to lose weight. His energy is good, doesn't take naps during the day anymore. We go for 3 mile walks, and since his incision is about closed now, we'll start riding bikes again. He has had some acid reflux and reguritation but I think he just needs to learn to not eat even a few bites so close to bed time. Seems like everyone recovery is different and with all the little complications we've had along the way I have learned alot of patience. He just today got discharged from skilled home nursing because he is doing so well and his incision is almost closed...so it's a small victory for us.

Sounds like your husband is doing quite well considering, just keep pushing on and best of luck to both of you.

Anjanette & Robert

Tina Blondek said:

Hello Anjanette!
So happy to
Hello Anjanette!
So happy to read your reply to Patti. Great news for you and Rob! Hip Hip Hooray! I love to hear any good news. You have made my day. Hugs to you and Rob, and keep up the good work. Enjoy those walks and bike rides.
Tina

Keep the faith...........
I too was diagnosed in Feb 2010. I was stage 2N1. I was given the choice of chemo/radiation first followed by surgery Or go with the surgery first followed by chemo, cisplatin and 5FU. I went with surgery first. Had Ivor Lewis at Mayo, MN in late March. Recovery is lengthy and slow. I too am 57 years. Post surgery I lost 60#, had it to lose. By mid summer my appetite returned and although I don't eat as much as I used to I do enjoy most anything I want. Don't eat before bedtime and eat small amounts often. My weight has stabalized and am doing very well. I was only getting about 1250 calories per day post op but did not get a feeding tube. I returned to work part time in late June and now work full time although I still get tired and lungs still have some repairing to do. I had a ct scan in mid august and all was clear. I have you in my thoughts and daily prayers. God Bless Gerry

My Recovery Experience
Hi Patti,

I am a bit older than Jim, I am 62. I was diagnosed with esophageal cancer in October of last year and had an Ivor Lewis esophagectomy in December. From the description you provided of the placement of the incisions in Jim’s surgery it sounds like he had a transhiatal esophagectomy (THE). Not quite as intrusive as an Ivor Lewis but close.

It took me about six weeks to feel well enough to move around freely and do simple chores outside like wash the car and yard maintenance. I still had some pulling sensation at the incision site in my back (in an Ivor Lewis procedure the largest incision is in the back under the right shoulder blade).

I also found that using the J-tube for feeding caused me to be very nauseated in the morning. Once I stopped using it the morning nausea seemed to improve.

I was still having some occasional stomach cramping after eating and once and a while the dreaded “dumping syndrome”.

Eight weeks after surgery I started 18 weeks of chemotherapy using Cisplatin, Epirubicin, and 5 FU…. Sound familiar? I must say that my recovery slowed significantly while I was receiving chemotherapy. I structured a diet that included meals 7 times a day following the esophagectomy diet defined at UPMC. I have included the web site reference below:

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf

Using the diet along with some high calorie supplements like BeneCalorie and Carnation Instant Breakfast with whey protean, I could get about 2000 calories a day.

I am including below a recipe for a high calorie shake developed by Sherri another member of our EC family. It has about 1000 calories and tastes great.
__________________________________________________________________
1 packet carnation instant breakfast.
About 4 large strawberries or other frozen fruit.
About 8 ounces of milk
2 scoops of vanilla ice cream (or frozen yogurt)
2 scoops of whey protein
3 large tablespoons of vanilla yogurt
__________________________________________________________________

I also found the 5 FU that was a part of my chemotherapy regimen exacerbated my dumping issues so I found that regular use of an anti-diarrhea medication called Lomotil
was helpful.

Of course fatigue was an issue with chemotherapy. I would say my recovery in terms on healing and stamina were negatively affected during the treatment time. I received Cisplatin and Epirubicin every 21 days and 5 FU via a portable infusion pump I wore 24 hours a day 7 days a week. The first week after I received the Cisplatin and Epirubicin was always the worst. I would gradually feel better during week 2 and 3 of the cycle and then it was time for the Cisplatin and Epirubicin again. I found that dehydration was an issue and if I arranged to go in for IV hydration two days after I received the Cisplatin and Epirubicin things were much better.

Once I finished Chemotherapy things got better very quickly. I am now 8 months from surgery. I can eat about anything I want, with the exception of items that are high in sugar content. Those things will still cause dumping. But I now eat steak and spicy foods and most anything I want as long as I make sure I chew thoroughly and don’t over eat.

I would say at 8 months I am 80% recovered. I walk four miles every day. I do all the chores around the house again including cutting the lawn and tasks that require medium lifting. I am about to start playing golf again with the blessing of my surgeon. Most people who have had Ivor Lewis surgery say about one year is required for full recovery. For those of us that have the misfortune to have adjuvant chemotherapy that time may be a little longer.

I hope Jim’s chemotherapy goes quickly and his side effects are minimal.

You and Jim will be in my thoughts and prayers.



Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 – Stage IIB
12/03/2009 Ivor Lewis
2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

JimsBrother said:

Smart cat
Tina,

I have had a cats around for a long time. I find them calming.

Love the photo
Made me smile my husband is in surgery again I need a laugh
Doris