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survival age after diagnosis

faithinlord
Posts: 27
Joined: Dec 2014

 

 I noticed Donna70 did roll call of survival age after diagnosis of ec  in 2010. It was a wonderful concept. I was wondering if we can do the roll call to give hope to myself and lot of other people on this forum. Please mention stage, type of ec  squamous or adenocarcinoma. And which year was it diagmosed. I will start out with ours.

Husband stage 2

Adenocarcinoma 

Diagnosed Oct 2014.

Deathorglory's picture
Deathorglory
Posts: 325
Joined: Jul 2013

Stage III in May 2008.

Stage IV recurrence in October 2011.

Adenocarcinoma.

Testing clean since May 2012.

sevenvoltes
Posts: 5
Joined: Aug 2015

My son 21 years old was diagnosed with esophageal cancer stage 4 which has spread on lymph nodes. Primariy, it was germ cell tumor but I guess he was misdiagnosed. and now, it was EC stage 4. Can you share your story?

paul61's picture
paul61
Posts: 1363
Joined: Apr 2010

Adenocarcinoma - Stage 2B

November 2009

Clear scans to date

 

scoot108
Posts: 19
Joined: Aug 2013

Hi, I had Adenocarcinoma. Stage 3 T2 N2. Diagnosed April 2012. Went through preop chemo and radiation. Transhiatal surgery September 2012. Went from 240 lbs before all this down to 173 lbs and am currently 196 lbs. Had a leak at the upper reattachment that scarred and narrowed. Had about 30 dialations. Still have eating and diet issues but have adjusted best I can. Have a ct scan coming up this April but so far no signs of reoccerance. I will be 52 this May. Scott

Bluejay83
Posts: 4
Joined: Sep 2015

Hi Scott . My name is Rodney. I have lung cancer   they tell me the radiation will burn uo my esophagus and it will b hard to swallow. That sounds tough. Can u tell me anything about it

 

scoot108
Posts: 19
Joined: Aug 2013

Hi,

 

Sorry about the late answer.  I had really good luck with the radiation.  My tumor had grown and I was living on spaghetti run thru a processor and chicken and rice soup that I had to pick the chicken out of.  The chemo shrunk the tumor and made swallowing so much better so that I did not notice the radiation making it worse.  I will say everything tasted like crud and I was extremely tired.  Hope you are doing best as can be.  Good luck.  Take care.

 

Scott

South Side Steve's picture
South Side Steve
Posts: 32
Joined: Nov 2011

I was diagnosed with Adenocarcinoma T2 N1 M0 Stage IIB in November 2011. I had pre-op chemo and radiation and then Ivor Lewis surgery in March of 2012. I've had clean scans since surgery.

Steve

hughesjohnw
Posts: 10
Joined: Jul 2012

Adenocarcinoma stage 2b

diagnosed: July 2012

Surgery: August 2012

chemo & radiation: November & December 2012

clean scans since

 

 

LovingMummy
Posts: 3
Joined: Apr 2015

My son

Diagnosed Oct 2014 Stage 3b adenocarcenoma EC cardia

6 Chemo/ 28 radiations/ Surgery  Feb 19th 2015

Recovering , lots of coughing, finding difficult to eat food my mouth

 

morningstar7777
Posts: 3
Joined: Jul 2015

How is your son now?  My husband has stage three and unable to eat by mouth.  I don't know what to expect.  

radtraveller
Posts: 4
Joined: May 2015

Diagnosed 14 Sep 2012  Incidental Finding on workup for a completely different issue.  Was never symptomatic.

t1n0m0 Adenocarcinoma.

Transhiatal  10-16-2012     No chemo or radiation

 Went from 210 pounds to 130lbs in 5 months.  Back up to 155-165 range now depending on how I feel eating.

Some issues with needing Dilation

Still have eating issues, abdominal pain, "short stroke" gerd (aspirate reflux), nausea/vomiting.

Clean CT 3/17-2015

rajmohan
Posts: 1
Joined: Jun 2015

Current age 79, Age at which diagnosed 67. SCC stage IIIB, middle 1/3. Cisplatin and 5FU IV auoto pump 1st and 5th week, concurrent 6Mv Xtrys  1.8 Gy x 30 fractions. Diagned in April, Treatment completed on May 30. CT-PET in August showed NED. Refused further surgery or HDR Brachytherapy. Was a vegetarian since 1996, no alcohol from April 2003.. The usual risk factors of smoking, obesity etc do noy apply to me.Only taking Nexium to reduce the chances of any reflux. One is unlucky to get cancer, but middle 1/3rd of oesophagus is a better place for traetment rather than upper or lower parts. Considering the statistics of 12% survical for more than 10 yrs, I am lucky . I think being a vegetarian and teetotaler have helped me.

JulieN
Posts: 10
Joined: Sep 2014

Do you still have scans yearly? Just curious! 

goty2001
Posts: 74
Joined: Jul 2012

stage IV diagnosed May 2012 - mets & non-operable - aged 50

have forgotten names of drugs but very heavy dose chemo regime for 6 months reduced to just herceptin...

clean scans & fit as a fiddle for last 30months

DeeHour
Posts: 2
Joined: Oct 2017

Hi Goty2001,

 

really inspired by your story, how are you doing today?

Best Regards,

Dee

Tkincaid2
Posts: 13
Joined: Nov 2013

Diagnosed 2013 @ 46 with EC - adeno/squamous & neuro-endocrine
Stage 3 with no lymph node or other organ involvement
Chemo/radiation
THE surgery on March 17, 2014

Ct scan with NED will get my EGD this Thursday & expect great results!

Lee Christensen's picture
Lee Christensen
Posts: 48
Joined: Nov 2010

Diagnosed Nov. 2010 @ 56 Stage 2

MIE Dec. 2010 at Mayo Clinic

 

BobHaze's picture
BobHaze
Posts: 162
Joined: Sep 2011

Diagnosed adenocarcinoma T1M0N0 August 11, 2011.  MIE September 23, 2011.

CT scans every 6 months for 2 years, then annual since; my next scan is next week.  NED since surgery.

Weight went from 199 to 165 and is holding there, no matter how much I eat.  I can eat more often and try to eat more quantity (never a good idea, as it turns out!), but I don't gain any weight, just more trips to the toilet.

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

andenocarcinoma   Stage II dx Feb 2010   IL surgery Mar 2010 follow up chemo

5 1/2 year survivor    Grateful     GerryS

 

cmpitts001
Posts: 4
Joined: Sep 2017

Husband, age 65, diagnosed as stage IIb in Feb 2016. Had radiation/chemo then gastric pull up, June 2016. Lymph nodes tested positive at surgical pathology. More chemo and then found a lesion on femur, March 2017, restaged to stage 4 with mets to the bone. More chemo. CT scan in Sept 2017 shows a new lesion on breastbone, possible cancerous nodule on liver and back but not confirmed. Not responding to chemo so now doing Cyramza, a monoclonal antibody drug. Follow up CT in about 60 days. Doc says they are running out of options for tretment

marlin307
Posts: 5
Joined: Nov 2017

Mother in law diagnosed w/ stage IV adenocarcinoma Oct 2017 age 62.  Tumor to lower esophagus, spread to liver, lesion on a lung, L2 lumbar, some lymph nodes.  She starts chemo, folfox, Monday 11/20.  We currently do not have results for HER2.  Very nervous for her, she seems to be rapidlly declining, very nauseated today.  We had 2nd opinion at MD Anderson in Houston this past week.  Trying to find a way to keep her healthy thru nutrition.  If anyone has tips they would like to share, it would be greatly appreciated. 

mardigras's picture
mardigras
Posts: 214
Joined: Sep 2011

Hello Marlin,

I’m so sorry that your Mother seems to be struggling. Hopefully she will be able to cope with the chemo and stay strong.

My husband was stage 3 and was able to have an oesophagectomy, but had lost a great deal of weight by the time the op came around.

We are English, but live in the Canaries now as my family are here. Prior to his op, we kept him healthy and upped his strength by giving him porridge for breakfast, with cream. Also a smoothie mid morning with blue fruits( when the blackberries are available, pick loads and freeze them).. I used the frozen ones when I couldn’t get fresh with Greek yogurt. In the afternoon he had a third of a tub of quark with Mango or a soft fruit and a teaspoon of linseed oil. These are all things that the Canarians use to treat cancer. I don’t know if you Mother has swallowing problems, but if she can swallow, Robs favourite was chicken in coconut milk, with lemon grass, ginger and peanut butter. I served that with rice. If you would like the recipe, i’ll Write it out for you.

i also made watercress soup which he loved and I think he needed the iron. The chemo seems to deplete iron. Again, if you would like the recipe, i’ll write it for you.

There is a train of thought here that baking soda helps to treat cancer. We read a lot about it at the time. My husband decided that it couldn’t hurt , so puts a half teaspoon in a glass with a little water and drinks it.

he was diagnosed in July 2011 and is still healthy. He now eats pretty much what he likes, but still loves all the things he had before and after surgery.

His weight stabilized quite early on and he has maintained a reasonable weight and his strength is good.

We also walked every day and I think that helps.

i do hope your Mother will cope with the chemo.

If I can help further, please don’t hesitate to ask.

Hugs,

Marci

 

 

pvilletom
Posts: 8
Joined: Jan 2018

Diagnosed August 11, 2017   Age 60

Adenocarcinoma Stage 3 T2 tumor located at esophagus/stomach junction.

23 radiation and 5 chemo treatments

Trans Hiatal esophogectomy performed on December 18, 2017 in Madison Wisconsin

I have been having problems with occasional dry retching, nausea, dumping, and diahrea. I still have a J tube and am trying to find foods that I can eat to get free from the feeding tube. It feels like I am a long way away from being able to get the calories I need to get rid of the tube.  My weight is down from 165 to 150 and I really don't want to get much lower than that.  I would appreciate any suggestions.

pvilletom
Posts: 8
Joined: Jan 2018

Diagnosed August 11, 2017   Age 60

Adenocarcinoma Stage 3 T2 tumor located at esophagus/stomach junction.

Jim0586
Posts: 3
Joined: Jan 2018

I am 1 1/2 years post transhiatal and also had a j tube.  I found drinking Ensure or other protein drinks helpful.  Soft foods like scrambled eggs and yogurt helped me get the calories I needed to get off the j tube.  I still have difficulties with high starch foods like potatoes and rice but otherwise I eat normally but smaller meals.  I hope this helps!

pvilletom
Posts: 8
Joined: Jan 2018

Thanks Jim, I really appreciate the advice, so far Ensure has not gone well as I seem to get dumping syndrome when I drink it.  I am starting to experiment with other foods and it seems to be working! Even pizza and fried chicken in small amounts.  Thanks again Jim!

Tom

 

 

Deathorglory's picture
Deathorglory
Posts: 325
Joined: Jul 2013

Hello Tom,

Really, you can eat pizza and fried chicken, but not Ensure?  You are a rare duck.  Enjoy your new normal, it's a lot different than most folks.

Best wishes,

Ed

pvilletom
Posts: 8
Joined: Jan 2018

Hi Ed,

I see that you were diagnosed in May of 2008, so you are closing in on 10 years of survival!!!  Congratulations in advance for making that milestone, it encourages all of us who have been recently diagnosed.

As for my new normal, I'm not exactly sure what that is just yet, I am still in the experimental stage when it comes to food, I have found that if I chew it up fine enough, I can eat just about anything. I have seen some posts that have said they eat anything they used to, only in smaller amounts.  What does your daily diet look like? Are there foods that you can't eat. What are some of your favorites? I am pretty sure I am going to have to get at least 1800 to 2000 calories a day by mouth in order to get rid of the feeding tube and right now that seems almost impossible. I am six plus weeks out of surgery and still get 900 to 1200 calories a day from the feeding tube.  Any food tips you can give me would be greatly appreciated.

Thanks Ed

Tom

Deathorglory's picture
Deathorglory
Posts: 325
Joined: Jul 2013

Hi Tom,

I almost missed you on this thread.  I only found this b/c I was looking about the guy who's here (on half a dozen threads) trying to sell his book about how diet & spirituality cured his cancer.  Imagine trying to cash in on your cancer from other cancer patients.  It'd probably be more efficient for you to start your own thread.  It's easy to do.  That way everything would be about what you want it to be about instead of a dozen other things that are hard to differentiate/locate.  

I'll answer your questions, but I will point out that I am probably not a good example to follow.  I have done a bunch of things because they made me feel like I was in charge of my life, not the cancer.  A lot of those choices came with a price to be paid, which I have been willing to pay because I'm a bit of a maniac.  My current diet (9 years out from surgery, to be clear) is that I eat and drink just about anything I want in fairly large quantities.  I have slowly expanded my new stomach from its minimal capacity to its current (normal for normal people) capacity.  That was a long and frequently painful process.  I overate a million times, which came at a price every single time.  After the surgery, I only used the feeding tube for two days.  I was eating peanut butter toast and drinking lemon tea for most meals for a while.  The feeding tube got jammed and we couldn't get it working (including an ER trip) so I just ate by mouth to get calories.  Soon enough, I was eating other foods in smaller, more frequent meals.  

As far as tips to offer, I really try to stay away from giving folks specific advice because everyone's journey is specific to them and I don't think what worked for me is necessarily useful to anyone else.  I'll give some general ideas, but I'm sure you've already figured these things out yourself.  Make your foods/liquids multitask.  An example is that you can get hydration, calories, protien and fats from drinking milk instead of water, which only provides hydration.  Cooking with additives like whey powder or protien powder can stretch the value you get from each time you eat.  Unfortunately, losing a ton of weight (and accompanying strength) is just what happens.  I dropped from 165 pre cancer to 115 post surgey.  I regained a good chunk of that and then had a recurrence where I dropped from 145 to 110.  The recurrence was in 2011.  I now weigh 175, which is the heaviest I've ever been.  It took a long time (and a lot of vomiting from overeating/reflux) but I'm happy with my pot belly.  

I'd suggest you work with your doctor and the hospital's oncology nutritionist to figure out what will work best for you.  

I hope things continue to go well for you.  From what you've described, you're ahead of the curve.

Best Wishes,

Ed

pvilletom
Posts: 8
Joined: Jan 2018

Thanks Ed.

I appreciate the response. I was told by my surgeon that my stomach and my capacity to eat would not expand. It is good to know that is not the case, although I don't know if I can stand all of the overeating and subsequent vomiting to achieve that. You reallly are a maniac! I feel like my biggest problem is that I never feel hungry and it is difficult for me to eat by  the clock. I have talked to the nutritionist and I don't know if she has ever dealt with someone who has had EC surgery. I have received better advice on this website than I have from the medical community as far as recovery and eating strategies.

The only reason this website is so valuable, especially for people like me, who are recently out of surgery, is because of people like you who keep helping EC patients even though your own surgery was years ago. For that I am very grateful.

Thanks again, Ed, for your thoughts and sharing your experiences.

Tom

Deathorglory's picture
Deathorglory
Posts: 325
Joined: Jul 2013

Hello Tom,

In practical terms, an esophajectomy is very similar to bariatric surgery, which if you research has a lot of people regain all of the weight they've lost as their new stomach expands and adjusts.  It isn't a quick or painless process, but I can now get my money's worth at all you can eat restuarants.  Those previously obese folks who get bariatric surgery and then regain all the weighr they lost go through the same thing.  

There will be times, as you have noticed, where eating is much more a medical obligation than an epicurean affair.  You just have to commit to eating x amount of food y times a day (x and y being specific to you, not anyone else).  Whether you want to or not is irrelevant.  It's a medical thing, not an enjoying yourself thing.  That part of it can last a while.  It was about 9-12 months after surgery until I was eating for enjoyment.  My second go around with EC had me on Folfox (a particularly brutal chemotherapy regimen) and I couldn't enjoy many foods because my sense of taste was thrown for a loop and things just weren't the same to me.  Also, food & drink temperatures were a big issue.  I was extremely sensitive to spices and couldn't eat anything that was moderately spicy.  And cold food & drink were brutally painful.  But I still had to eat, so it was a medical necessity, not something done for enjoyment.  

I appreciate that you find what I do here useful.  I lurked here for years, just reading.  I didn't register, much less post, for quite a while.  Finally I thought to myself that it was time to repay the site for the benefit I got from it.  Hopefully, someday you'll pay it forward to the next batch of folks at some future time that will be dealing with the things you're dealing with now.

Best Wishes,

Ed

l

pvilletom
Posts: 8
Joined: Jan 2018

Hello Ed,

Once again I believe I got bad information from the medical community. I asked that very question of my surgeon before the surgery.  I have a friend who had the bariatric surgery about seven years ago and after five years he weighed the same as when he first had the surgery. I specifically mentioned how his stomach must have expanded because he could eat as much or more than he did before the surgery. My surgeon said it was a different kind of surgery to a different part of the stomach and that my capacity will expand somewhat, but it will never be close to what it was.

You are absolutely right about eating being a totally medical thing right now. Almost nothing I eat is enjoyable.  I am only eating to get calories, the more the better. It sucks that I don't like or can't tolerate the high calorie drinks out there. You made me laugh out loud with the comment about all you can eat joints. I have a few friends that are quite large and really like to go to those places. I barely got my moneys worth before the surgery (my max weight before surgery was 170 or so, now down to 155 and still using the feeding tube).

I can only hope that I am aroung long enough to be able to pay it forward the way you have.

Thanks Ed

Tom

PaulT
Posts: 10
Joined: Dec 2017

Tom, 

have you tried Boost Glucose Control? It's gluten free and suitable for lactose intolerance and only has 4 grams of sugar.

 

Paul

pvilletom
Posts: 8
Joined: Jan 2018

Hi Paul,

Thank you for the suggestion. I have only tried ensure plus. It's possible that there is too much sugar in the ensure plus, I will have to experiment with some different protein drinks. I still have trouble getting enough calories by mouth. I am six plus weeks out of surgery and I am still getting 900 to 1200 calories a day from the feeding tube.  It seems that I have good days where I can eat 5 or 6 times a day and get 1500 calories or so, and then I have days where I don't have an appetite, I feel nauseous and I only get about 500 or so calories in a day. I can only hope that the bad days become fewer and farther between, and the good days get even better.

kbdarnall
Posts: 29
Joined: Dec 2017

Hi Paul- My husband lost weight rapidly before EC treatment. I had trouble getting him to eat. Nutritionist suggested coconut oil for smoothies and other recipes. A teaspoon of coconut oil adds 43 calories and it has a mild, pleasant flavor. My husband has diabetes and takes Metformin. So, I must be thrifty with sugar.

I enjoy experimenting with smoothies. I bought a stove-top hand blender (Braun) because it is easy to assemble and clean. I can blend almost anything instantly. I make small portions (4-6 ounces) and put these in the fridge. During the day, I encourage him to drink a smoothie. Currently, he is actually gaining too much weight. But I have developed a strategy that will work post surgery.

Not everything tastes good. Coconut oil can boost calorie content without changing the flavor. Through trial and error, I discovered "Premier Protein" (vanilla flavor) as a good base. Premier has 30 grams of protein in 11 oz and 160 calories. I use 1/3 Premier for each smoothie (10 g protein) then add high-calorie ice cream for 2nd component. Other additives are peanut butter, Hershey's chocolate spread. Don't rely on fresh fruit unless it has strong flavor. Blueberry smoothie, with fresh berries, was not good. Sometimes I use fruit-flavored ice cream, then boost the flavor with preserves (pineapple, cherry, strawberry). Bananas and apples are good for adding texture. We have an orange tree that's dropping lots of ripe fruit. I am making Orange Julius type smoothies. You could probably use concentrated orange juice. 

My husband T3N0M0, has one infusion + 5 radiations to go. Next, we will focus on normal diet and exercise to get ready for surgery.  

BTW- Be careful with coconut oil if you use it for frying. It's wonderful for hash brown potatoes, but it smokes at low temperature and could ignite. 

PaulT
Posts: 10
Joined: Dec 2017

Kbdarnall, very good suggestions on the added calories. I lived on premier protein before my esophagectomy but could not drink them after my surgery as they made me very nauseous and or gave me dumping issues. Either the sugar or dairy in them really messes me up. But I can drink Boost Glucose Control all day long, I'm guessing because they are low in sugar and suitable for lactose intoleranc.

Tom, for only being 6 weeks out it sounds like you are doing  as well as can be expected. I am 2 years out from my esophagectomy tomorrow February 9th and I remember the first few months I was very nauseous and dumping issues and the dry heaves after almost ever meal but after a few months it got better and better and am doing really good today. There is another product you could try so you can maintain or even gain weight. It is called benecalorie and can be purchased on Amazon. It is unflavored 1.5 fluid ounce cups that you can mix with any liquid or food. Each little cup has 330 calories and 7 grams of protein. This definitely would help you maintain or gain weight. This are considered a medical food so I would recommend you let your Oncologist know before you take them. Feel free to ask any other questions you may have but overall at 6 weeks out you sound like you are doing fine.

 

Paul

pvilletom
Posts: 8
Joined: Jan 2018

Kbdarnell and Paul,

I really appreciate the tips on keeping my calories up. Just ate a taco bell cruchy taco and it seems to have gone down ok.  I definitely think some of the protein drinks have more sugar that I can currently tolerate, so it is nice to know that there are some alternatives out there.

 

Paul,

Congratulations on your 2 year anniversary tomorrow, that is wonderful news. I also want to thank you for your advice and encouragement. It means a lot coming from someone who has "walked the walk", I have never been on one of these on-line forums and I am blessed that I decided to "take the plunge" because I get better advice here than I could ever get from the medical community.  They do certain things very well, but this is where you go to get detailed information from people who have been there, done that.

Thanks again, Paul

Tom

CancerEclipse's picture
CancerEclipse
Posts: 15
Joined: Jan 2018

I' 74 now, and was diagnosed with EC in Sep 2014 at Stage II, T3,N1, MX. I fought it for 3 years in various ways -- medical, naturopathic, and spiritual -- and when I finally submitted to the operation in Seattle, WA and they took out the tumor, it was more encapsulated and more like, Stage 1 T1,N0,M0. Did my multi-faceted treatment track actually move my cancer backwards?  In the operation hey took out 17 lymph nodes and none had cancer in them whereas it looked like two had cancer in them before. I've written all of this down, so if you're interested in the details, please let me know, <Content removed by CSN Support Team>. I'm glad so many of you are survivors. I'm out 11 months from the operation and scans are clear!

danc1962's picture
danc1962
Posts: 11
Joined: Nov 2016

Hi. My name is Daniel. I was diagnosed with small cell squamous cancer in September of 2016. After the surgery to remove part of the tumor which was t3, I did six chemo and 35 radiation treatments. All checks since have been clear. I am definitely still healing. Fatigue is the worst thing left. Early this week I began to get dizzy. I am going tomorrow to get checked. Also, the radiation pretty much ruined my lower teeth. I am thankful for the great care of the physicians and am blessed by the Lord no matter what. Keep strong. Dan

mardigras's picture
mardigras
Posts: 214
Joined: Sep 2011

Adenocarcino a

September 2011

stage111

Kymberlyn's picture
Kymberlyn
Posts: 3
Joined: Dec 2019

I'm so glad to wander into this thread. My husband was just diagnosed and everything else had me feeling like he was terminal. It is soooooo good to see survivors. Now I can rest easier until the oncologist gives us a final prognosis. We see him next week for staging. So far we only know the biopsy showed adenocarcinoma esophogeal cancer. Best of luck everyone. Stay clean! 

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