CSN Login
Members Online: 13

New to board

hobbssy
Posts: 19
Joined: Aug 2010

Hi: I'm new to the board and I have a couple of questions that I hope can be answered here. First a little history. My husband Jim was diagnosed in Feb.2010 with esophageal cancer at the junction of the stomach and esophagus. He underwent 9 weeks of chemo (cisplatin, epirubicin, and 5Fu) Tolerated the chemo well, gained 15 pounds and had surgery on July 12 2010. Not sure the name of the procedure they did but they removed 3/4 of his esophagus and 1/2 his stomach and made a new esophagus from the remaining stomach. He had an abdominal incision, right chest incision and left neck incision. He had a leak post-op at the anastomosis site in his neck, but that has healed and he is eating a regular diet and supplemented with tube feeding. He has done surprisingly well, getting his energy back, rides his bike,washes cars and light maintenance around the house (since he is only 7 weeks post op, he's still supposed to be taking it easy.) Not sure of the stage of his cancer, although I know 7 lymph nodes near the operative site were positive. My husband is 58 yrs young. He starts September 7 with 9 more weeks of chemo. He is very nauseated in the morning and the Dr. explained this is because the vagus nerve was removed. The surgeon suggested stopping the nocturnal tube feeding. We stopped the feeding and the nausea isn't as bad, but still remains. My questions to the group are 1. How long was your recovery. 2. How long before you had stamina, my husband is tired and naps frequently throughout the day. 3. How many calories a day, do you consume? My husband is grazing all day, drinking ensures also and has a hard time getting over 1600 cals/day. He continues to lose weight weekly. I am enjoying reading all the posts and have learned alot from this site. Looking forward to reading your replies. Patti

JimsBrother's picture
JimsBrother
Posts: 107
Joined: Aug 2010

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

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

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

JimsBrother's picture
JimsBrother
Posts: 107
Joined: Aug 2010

Tina,

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

ladyleisure1
Posts: 11
Joined: Aug 2010

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

JimsBrother's picture
JimsBrother
Posts: 107
Joined: Aug 2010

It took weeks to get the cat to pose for that.

Rob

slydog11
Posts: 40
Joined: Aug 2010

Hi Patti,

I'm still too early in this process to offer hindsight but I was diagnosed 5 weeks ago with Stage IVb EC at 56. So far my chemo has been without major side effects except some fatigue. I'm part of a clinical trial at Mass General and am feeling positive.

Keep up the journey in a positive light. Like your husband my challenge is to eat well enough to maintain my weight. Luckily I'm able to eat normal foods again after such short treatment.

Good luck Patti!

Paul

Bedee
Posts: 24
Joined: May 2010

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

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

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

Anj_and_Rob's picture
Anj_and_Rob
Posts: 29
Joined: Apr 2010

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's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

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

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

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

hobbssy
Posts: 19
Joined: Aug 2010

Thanks for all the replies and thoughts and prayers. I will continue to read all your posts for suggestions and to follow everyone's progress. My husband has tried numerous medications for the nausea including zofran and cesamet(medical marijuana), as well as maxeran. The maxeran seems to work the best, but doesn't take it away completely. The Dr. said it could take 8 months to get rid of the nausea. Thanks again and hopefully I will be able to contribute to the board with experiences that work and ones that don't. God bless you all. Patti

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

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

ladyleisure1
Posts: 11
Joined: Aug 2010

My husband is now in surgery will answer soon

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Mrs Lady of Leisure--
Best wishes for great post op recovery---take a deep breath...you will need it... ask lots of questions--stay positive even when you are scared---stay positive in front of hubby...

I am not a wife------but daughter. Your post though brings back the stress of that time---of waiting for "results" and then day by day recovery. It is so difficult to describe to another person---so this site is so great -- because so many KNOW EXACTLY how you feel! I just FEEL the stress you are feeling and will say prayers--- keep posting--it can help alot and doesn't hurt!
KIM P

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network