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New Here just want to get acquainted.

lenlee65
Posts: 47
Joined: Aug 2012

My name is Len. I have been cancer free for 13 months now after chemo/radiation and surgery for Adenocarcinoma of the Distal Esophagus. I have read some of the posts and can relate to some but not all of what has been posted. I noticed someone about to have the laproscopic surgery, in my case unfortunately, I had the full blown 8 hour surgery complete with deflated lung, NG tube and chest tubes but I survived and now I eat and drink just about anything I want in smaller quantities of course. I would love to communicate with other survivors or anyone dealing with the cancer. Anyway nice to be hear and I hope to hear from all of you soon.

jtebo1955
Posts: 46
Joined: Apr 2012

I'm 57 yr old female that is 17 months out of surgery and chemo with radiation. I also can eat most anything in small quanity. No problems with reflex I even sleep flat. From what I've read of some , we are pretty lucky. Did you change anything? I gave sugar up and take a few things that is suppose to be good..green tea, aloe, honey etc.

lenlee65
Posts: 47
Joined: Aug 2012

Hi, I still have reflux problems and sleep with a bed wedge. I have tried sleeping flat but I'm so used to the wedge that I couldn't do it. It took me a while to get my apetite back and like you I have cut out most of my sugar intake. I do keep small candy bars handy and have one from time to time. But not much ice cream, cake or pie anymore. Pancakes used to be a favorite but now not very much. I find that now my normal diet tends to be healthy foods so I don't really make an effort at eating or drinking anything special. I probably drink too many carbonated sodas but they don't seem to hurt or bother me much. Don't know if I mentioned it but I am 65 years old, just had a birthday in June. I am physically stronger now than I was over the past 15 years or so mainly because I am retired, not in an office all day and work about 3-4 hours a day outside doing something physically demanding. I haven't had any problems swallowing but will definitely have abdominal discomfort if I overeat or rarely now I will have an episode of "Dumping" followed by Diarhea. Fortunately the "Dumping" is getting rare, guess as I heal things are getting better. What kind of surgery did you have?

jtebo1955
Posts: 46
Joined: Apr 2012

I'm glad you are doing well. I had the same surgery as you in April of 2011. I'm getting ready for a scan in a few weeks and starting to get that uneasy feeling again, but that is pretty normal from what I read. I retired but recently returned to part time. I started receiving ss disability last year, so part time works well. Been doing lots of travel in the last year and hope to be able to get away from Michigan weather this winter. I'm probably in better shape just because I lost 45 lbs, thank God I had it to lose, I enjoy shopping for clothes now and feel pretty good about myself. What kind of work did you do before?

lenlee65
Posts: 47
Joined: Aug 2012

I have lost about 80-85 lbs myself but I really had it to lose since I was medically classifed as morbidly obese even though I was fairly active. You had your surgery a couple months before I did. Yeah those scans are worrisome but necessary. I have a PET scan scheduled for Dec 4 of this year by my surgeon, of my oncologist is very interested too but they both think it will be good since all my other tests so far have been good. I am completely retired now since being sick. I am 65, draw regular SS benefits such as they are but my living situation is good and I pretty much do what I want when I want. I divorced in 2009 about the time my job was downsized and am a confirmed, complete and dedicated bachelor now. Have my dog (Jake the Wonder Dog) who could be a good "varmint" hound but is just a goofy pet and my best friend, I piddle around the place all day keeping busy and enjoying the outside. Nothing like being tied to a feeding pump with a J-tube for a few months to make you appreciate the great outdoors! So anyway I was an Accountant since 1979, before that I was in the Navy and then a college student for a couple of years. Born and raised in Texas, lived in the Tampa, FL area for about 10 years before divorcing, retiring and moving to live with relatives here in Mississippi.

jtebo1955
Posts: 46
Joined: Apr 2012

Glad to hear everything is good.I had the feeding tube for about 6 weeks after surgery but never used it. I ate, not a lot but I did eat. Of course with the surgery they removed lymph nodes and found 1 was positive...soooooooooon I had another 4 rounds of chemo. That was bad, I was way more sick than the chemo prior to surgery. But I made it so all is good now. It took pretty much a year to get back to normal. Your dog sounds like a great companion. We have a Yorkie poo ( mutt ) he was very comforting while I was going through treatments. Of course he loves to nap so with me sleeping 16 hrs a day I was his best friend and he stayed by my side. My husband was wonderful too. We remarried in 1999 after 11 yrs apart. Funny 1st time not so good, 2 nd time couldn't have asked for a better partner. Anyway, I have my scan Sept 18th...I'll let you know how it goes. Have a great summer..what's left of it, and stay in touch.

lenlee65
Posts: 47
Joined: Aug 2012

I had my feeding tube removed in October after surgery in July. But I was not using it much even before my surgery because the chemo/radiation combo had shrunk my tumor to the point that I could swallow again. I still had to be careful but I could eat and drink and with this super rich breakfast concotion I was making everyday actually gaining weight. After my surgery I never really used the tube or feeding pump again, the surgeon wanted it left it for a while until I could prove that I could hold my weight by eating and not using the tube. Of course when I promptly lost 10 more lbs to get down to 160 I had some fast talking to do but that was my weight goal, once I got there, I have kept that weight ever since. They removed 9 lymph nodes in surgery and they all came back clean so I have had no followup chemo since and the 2 CT scans and numerous lab tests have given no indication of any reocurrence. Of course my PET scan in Dec is a biggie so we will see how it turns out. I divorced in 2009 but my ex and I have what we like to call an amicable divorce. We talk on the telephone a couple times a week and keep in prety close contact. We are getting ready for Isaac today. After Katrina folks down here take these storms pretty seriously but I think this one will be a big rain event but not catastrophic at least I hope and pray that is what we are facing.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Stay safe! Hurricane or not... :) I've been reading your posts. You're one of the lucky ones!! Congrats on being CANCER FREE! That is good news.

Take care!

~Jayme

lenlee65
Posts: 47
Joined: Aug 2012

I lived in the Tampa, FL area for about 10 years before retiring and moving here so I am somewhat used to hurricane like weather. The folks here only have Katrina to go by so it is kind of crazy around here right now even though we are over 100 miles inland. Still these storms are so unpredictable you just cannot be too prepared for them. Thanks for the reply and best wishes. Nice to meet and you take care yourself.

Len

jtebo1955
Posts: 46
Joined: Apr 2012

I'm still losing an pound or two, but my eating is so light. I munch an nuts and berries. Can't do sugar or dairy and meat doesn't appeal to me. I'm good with it and drs haven't seemed to concerned.
I had my 1st experience with hurricane Irene last August. Went on a Disney cruise with kids and grandkids, we passed right by it was a pretty rocky ride that first night. It destroyed the Disney island so we had to go back to Bahamas, very disappointed. But an experience.
So take care and be safe, have a good holiday weekend.

Judy

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Welcome to our little group of survivors and caretakers. You will find several people here with experiences similar to yours. I had the "full-blown" Ivor Lewis surgery as well. I am almost three years out from surgery. I can eat most things in smaller quantities with the exception of items that are high in sugar content. I also find if I eat too quickly or eat too much I have some abdominal discomfort.

I have generally returned to all the things I enjoyed before being diagnosed with cancer. Of course, like most survivors here, I deal with the anxiety of the annual scans but so far so good.

Once you get past the first year things get better quickly.

I hope things continue to go well for you.

Best Regards,

Paul Adams
Grand Blanc, Michigan

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!

lenlee65
Posts: 47
Joined: Aug 2012

Hi Paul, glad to meet you. It is great to be able to talk to someone who has experienced the same things I have. I only received 2 rounds of Chemo, both times it was Cisplatin and 5FU. I had 25 Radiation treatments and of course the full blown surgery. Yeah the scans and tests are kind of scary but after what we have been thru it gets easier somehow. It seems that I feel better and do better each and every day. I know that now I want to spend as much time outside doing something as I possibly can. Have you ever done a Relay for Life? I did one in Navarre, FL earlier this year, it was very moving especially the survivor lap. Once again nice to meet you.

Len Lee
Mount Olive, MS

DX 04/09/2011 Never was told what stage.
07/20/2011 Surgery
May-June 2011 Chemo and Radiation Cisplatin & 5FU
13 month survivor.

Live each day as if it was the First and Last day of your life. Never Ever Give Up.

jtebo1955
Posts: 46
Joined: Apr 2012

I know we have spoke before but I see you are from Grand Blanc and I'm in the Kearsley area and was wondering who did your surgery and your oncology Dr is. I had Dr Silver and Danish is my onc dr.

Judy
Diagnosed Dec 2010

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

I am retired so I live in Grand Blanc, Michigan in the summer and live in South Carolina in the winter. I was diagnosed and treated in South Carolina so my surgeon was Dr. Carolyn Reed at Medical University of South Carolina and my oncologist is actually located in Augusta, Georgia (his name is Dr.Schlaer). We are in Grand Blanc through the end of September and then back to South Carolina for the winter. My wife and I are originally from here but we decided when we retired that we had seen enough of snow.

Best Regards,

Paul Adams
Grand Blanc, Michigan

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!

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

Welcome len,
I also didn't find this site until I was recovering. I wish I had found it during treatment. There are so many on here i could have learned from.

I had the ivor lewis 4 1/2 years ago. In Nov.will be five yrs. since diagnoses and I'm still cancer free. I have to sleep elevated and I still get reflux a lot at night. My dr. recently added a medicine, but it hasn't helped much. You're lucky to be able to sleep flat.

It's good to have you join us. We need to share success stories. Ec is devastaing and a hard cancer to fight. We need to encourage others with our survival story.

Sandra

lenlee65
Posts: 47
Joined: Aug 2012

Surviving this monster is a daily fight but we must never ever give up. I take Protonix daily for acid reflux but don't have a lot of problems with it. I could probably sleep flat given time but I am so used to sleeping elevated I keept doing it just to be on the safe side of things.

It was not until I was diagnosed and let family and friends know about it that I discovered just how many caring people there are in this world. You tend to take friends for granted sometimes but when this happened I learned who my true friends are and I treasure them. This site looks like a wonderful place for all us EC survivors, patients and families to bond and work together to defeat this awful disease.

Never Ever Give Up.

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

Len, Sorry, It wasn't you that slept flat. To bad--reflux is bad. My birthday was also in June. I was 69.
Sandra

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

We love to hear the positive stories of those who've survived this stinkin' beast. Glad that you are here, and remember positive mojo flows from you to us and us to you!

--Jerry

lenlee65
Posts: 47
Joined: Aug 2012

Good to meet you. That ole mojo will work. Never Ever Give Up.

jaycc
Posts: 131
Joined: Jul 2012

Great to hear from a survivor and how well you are eating. If you have any tips you used to get through the tough times, I would love to hear them. or maybe you can put them into your profile.

Looks like you got a set of people in the MS area. I'm a little further walk over in PA.

lenlee65
Posts: 47
Joined: Aug 2012

I will be updating my profile and will try to put some tips on it. Aside from having a large extended family and lots of friends from my high school days who were praying for me daily, I mainly just refused to give up. When I was diagnosed had a CT and PET scan and my oncologist told me the cancer looked like it was still just in my esophagus and he thought we could beat it and cure it, I told him to tell me what to do and when and I would do it. I resolved to do everything in my power and then to lean on God to overcome the awful disease. One of my heroes in life is Lance Armstrong. Think what you will about him, cycling, doping and PED's but he did beat a very serious cancer. I take my motto from him Never Ever Give Up. Lance wrote 2 books about himself and cycling. In one of them he said that in order to be a successful cyclist you have to be willing to work harder, endure more pain and last longer than the others. I put that to work in my own battle against cancer. Just refuse to give in, find someone you can talk to, really talk to on a daily basis and open up, let them into your innnermost fears. It helps to talk, start writing a blog or diary daily, not for anyone to read but so you can get what you are feeling out of you. Well I have rattled on about this but I hope it helps you in some way. Let me know how things are going with you. It is nice to meet you.

GerryS's picture
GerryS
Posts: 240
Joined: Aug 2010

It's great to read these posts. I, too, have had many of the same experiences as all of you. That chemo after the "full blown" surgery is a bi----! We are currently on vacation in Michigan and meeting this am with Paul61 . I share a similar timeline with Paul and looking forward to meeting another survivor from this board. It would be nice to have a EC reunion! I continue to pray daily for all of you.

Gerry

lenlee65
Posts: 47
Joined: Aug 2012

Hi, nice to meet you. I have never been to Michigan but hear it is a beautiful state. Enjoy your vacation! Think it is time for me to check Wunderground to see where ole Isaac is this morning! Take care and have a great time.

Len

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