Hi, All! I'm new to this and am looking for some support and information
I have had one full 6-rounds of chemo and was told I was in remission on 12/22/09. On 01/21/10, I had surgery in which they performed an Esophageal Resection. I was in the hospital for a week, home a week and this is the beginning of my second week back at work. My surgeon told us they believe they got all of the cancer by removing the esophagus. They did not find cancer in the 7 lymph nodes they removed and did not see any signs of cancer in any other organs. My surgeon told me I am "cancer free" as far as he is concerned...especially with the great pathology results.
I am going to begin 6 weeks of radiation of my abdomen/chest, as well as 6 weeks of chemo. I am told this is a fail-safe and will tackle any "straggler" cells that might be out there. My primary care physician said the radiation and chemo were basically "guilding the lilly", but I told him I didn't care and I would do whatever the oncologist thought was necessary.
I continue to struggle with my fear that something is lurking out there. I don't sleep well and have become very anxious. I don't know anyone who has been through this and I feel very isolated. I thought about finding info from ACS and stumbled across this specific CSN discussion board. I am thrilled to find it.
I would love to hear from any of you out there. I would also love to hear of any dietary advice anyone has for keeping up my caloric intake. I'm supposed to take in 1800 to 2100 calories per day, but it's difficult to do. I was just cleared from any dietary restrictions, so I'm hoping things will improve. I do have a J-tube and I take in a feeding generally every other day.
I know this is long, but I guess I had a lot to say. Thank you all so much for whatever information, support, advice, prayers, etc. I will be happy to pass on whatever I have learned.
Bless You!
Scott
Comments
-
Hi Scott,
Hi I'm Kathy aka Mumphy,
My husband Al was diagnosed with Stage IV EC in May of 09, I am not sure of what stage you were prior to surgery, but knowing that your Dr's would like for you to have the chemo and radiation for stragglers. Do it. My husband was what everyone thought to be cancer free in
December only to find out that the cancer had spread to his verterbra in his spine. We have a
very long history. There are alot of posts about our journey on this site and many others.
There is a Mr. William Marshall who I am sure will be responding to your post. He is a 7 yr
survivor of Stage III E.C.
As far as diet eat, eat and eat some more power shakes 2x a day, anything that is fattening
Ice cream, puddings along with you regular small meals.
There are alot of good people on this site who will help you, advise you, listen when you want to vent. The first post is the most difficult and you have done that. What is nice about this site is it is Cancer specific for the most part so everone here is either a patient
or caregiver dealing with E.C.
Al will start a new round of chemo ont Thursday of this week. He wants to fight this horrible disease which we also found out is now in his liver. We are praying for him go back into remission.
Read some posts when you have time there are multiple web sites for diets and increasing cal.
intake weight gainer from GNC is very good in shakes. You also may want to increase you tube
feedings since you still have it use it to increase calorie intake at night.
You did come to the right place!! The people on this site are great they are kind and careing
and they are from all over the world. If you need anything day or night some one will respond
as soon as they can.
Good Luck
God Bless,
Kath0 -
Thank You So Muchmumphy said:Hi Scott,
Hi I'm Kathy aka Mumphy,
My husband Al was diagnosed with Stage IV EC in May of 09, I am not sure of what stage you were prior to surgery, but knowing that your Dr's would like for you to have the chemo and radiation for stragglers. Do it. My husband was what everyone thought to be cancer free in
December only to find out that the cancer had spread to his verterbra in his spine. We have a
very long history. There are alot of posts about our journey on this site and many others.
There is a Mr. William Marshall who I am sure will be responding to your post. He is a 7 yr
survivor of Stage III E.C.
As far as diet eat, eat and eat some more power shakes 2x a day, anything that is fattening
Ice cream, puddings along with you regular small meals.
There are alot of good people on this site who will help you, advise you, listen when you want to vent. The first post is the most difficult and you have done that. What is nice about this site is it is Cancer specific for the most part so everone here is either a patient
or caregiver dealing with E.C.
Al will start a new round of chemo ont Thursday of this week. He wants to fight this horrible disease which we also found out is now in his liver. We are praying for him go back into remission.
Read some posts when you have time there are multiple web sites for diets and increasing cal.
intake weight gainer from GNC is very good in shakes. You also may want to increase you tube
feedings since you still have it use it to increase calorie intake at night.
You did come to the right place!! The people on this site are great they are kind and careing
and they are from all over the world. If you need anything day or night some one will respond
as soon as they can.
Good Luck
God Bless,
Kath
Kathy,
Thank you so much for taking the time to write me back. I know you have your hands full. I'm so sorry to hear about Al. I know that's incredibly difficult and I will add Al to my prayer list.
I was at Stage III when they diagnosed my EC. It's been very difficult for me to get my brain around. I am 48, married, with 4 grown sons...well, the youngest 2 are still in college. One will graduate in May!
I struggle with anxiety over my illness and it certainly makes me lose focus and causes me to not sleep very well, even with Ambien at bedtime. Although, I think that is getting gradually better. I seem to be sleeping a little deeper when I do finally sleep.
My wife, Jacki, is a Godsend and sustains me in my most difficult moments of despair. I could not do this without her. I don't think I would be strong enough.
I will go to GNC and get the weight gainer and start drinking it. I will also increase the tube feeding...although, I feel "trapped" when it's hooked up. Too bad. It helps. I appreciate your information and support. It's wonderful.
I will keep Al and you lifted in prayer.
Thanks Again,
Scott0 -
Welcome Scott
Well, Scott...the truth of the matter is --even those I know who are more than five years out still worry. In the back of their heads is the truth that cancer is sneaky and in EC, tends to come back. So I think you are very wise to do the follow up chemo and radiation. I would certainly not listen to a primary caregiver over an onc on this disease ever.
Sounds like you are doing very well thus far! That's wonderful. My hubby is 46 and we have five kids, three still at home (one of those is in college.) We know where you are coming from.
hehe I wish our website were up and running, you'd be a perfect candidate for our fun EC shirt. Sounds like you went into this fighting and have decided to fight it all the way. How wonderful for you. How truly wonderful!
And it also sounds like your wife is a GREAT caregiver. That is awesome and I love to hear patients give the credit due to their wives. I think it is so hard to be a caregiver in this situation and hold the family together. Hopefully, it strengthens your marriage even more!
Welcome,
Betty0 -
This comment has been removed by the ModeratorScott_74403 said:Thank You So Much
Kathy,
Thank you so much for taking the time to write me back. I know you have your hands full. I'm so sorry to hear about Al. I know that's incredibly difficult and I will add Al to my prayer list.
I was at Stage III when they diagnosed my EC. It's been very difficult for me to get my brain around. I am 48, married, with 4 grown sons...well, the youngest 2 are still in college. One will graduate in May!
I struggle with anxiety over my illness and it certainly makes me lose focus and causes me to not sleep very well, even with Ambien at bedtime. Although, I think that is getting gradually better. I seem to be sleeping a little deeper when I do finally sleep.
My wife, Jacki, is a Godsend and sustains me in my most difficult moments of despair. I could not do this without her. I don't think I would be strong enough.
I will go to GNC and get the weight gainer and start drinking it. I will also increase the tube feeding...although, I feel "trapped" when it's hooked up. Too bad. It helps. I appreciate your information and support. It's wonderful.
I will keep Al and you lifted in prayer.
Thanks Again,
Scott0 -
Thank you so much for yourBetty in Vegas said:Welcome Scott
Well, Scott...the truth of the matter is --even those I know who are more than five years out still worry. In the back of their heads is the truth that cancer is sneaky and in EC, tends to come back. So I think you are very wise to do the follow up chemo and radiation. I would certainly not listen to a primary caregiver over an onc on this disease ever.
Sounds like you are doing very well thus far! That's wonderful. My hubby is 46 and we have five kids, three still at home (one of those is in college.) We know where you are coming from.
hehe I wish our website were up and running, you'd be a perfect candidate for our fun EC shirt. Sounds like you went into this fighting and have decided to fight it all the way. How wonderful for you. How truly wonderful!
And it also sounds like your wife is a GREAT caregiver. That is awesome and I love to hear patients give the credit due to their wives. I think it is so hard to be a caregiver in this situation and hold the family together. Hopefully, it strengthens your marriage even more!
Welcome,
Betty
Thank you so much for your kind words of support. I have been completely overwhelmed at times by my illness. It seems like it came out of the blue, but I was ignoring a whole lot out of fear. I hope that doesn't turn out to be a tragic mistake.
I thank God everyday, actually many times a day, for the blessing of my wife Jacki. I simply could not have done this without her. She has been a rock of inspiration and strength and faith. Even in my darkest moments, she has managed to pull me back from the edge and shine love and light on me. She is a most treasured gift.
I appreciate your encouragement and hope all the best for you and your family. These are difficult days, but I am gaining strength and power over this disease.
Blessings To You,
Scott0 -
Great Ideaunknown said:This comment has been removed by the Moderator
Sherri,
Thank you for the suggestions. My pump is "portable" and I can take it with me during the day. I have only done that a couple of times because I was feeling self-conscious. Guess I'll be getting over that!
The carnation instant breakfast with whey protein,fresh fruit and no-sugar ice cream sounds good. I will give it a try. If I can take on 1,000 calories at a time, that would be great. My wife takes fish oil already, so I will check into that as well. I feel like I will do a lot better when I can gain a few pounds. I am maintaining my weight right now at 160-161 lbs. I lost 40 lbs altogether since I got sick. If I can keep at 165-170 lbs, I think I would feel stronger. I will keep working at it though. I am not going to let this thing win!
Thank you for the support and information.
God Bless,
Scott0 -
Welcome to our CSN familyScott_74403 said:Thank you so much for your
Thank you so much for your kind words of support. I have been completely overwhelmed at times by my illness. It seems like it came out of the blue, but I was ignoring a whole lot out of fear. I hope that doesn't turn out to be a tragic mistake.
I thank God everyday, actually many times a day, for the blessing of my wife Jacki. I simply could not have done this without her. She has been a rock of inspiration and strength and faith. Even in my darkest moments, she has managed to pull me back from the edge and shine love and light on me. She is a most treasured gift.
I appreciate your encouragement and hope all the best for you and your family. These are difficult days, but I am gaining strength and power over this disease.
Blessings To You,
Scott
Hello Scott and jacki,
We welcome you with open arms, as you can see from all of our posts. I am a caregiver for my dad, Ray, 71, ec 11-08 with mets to his liver 12-09. Beat the ec cancer, and is now taking chemo to beat the mets to his liver. Thanks to those of you who posted about weight gain methods. This is what i needed to know for my dad as well. He is down to 150, and should be at least 170. I will check out the weight gain powder from GNC. This is a long and bumpy journey. You have to take it one day at a time, and sometimes one hour at a time. You will have good days and bad days. You have to rejoice in the good days. Stay positive. Keep your faith. Having a wife that is so supportive is wonderful. Best of luck to both of you, and please keep in touch. Prayers will be being said for you daily.
Tina0 -
WELCOME TO OUR FAMILY OF CANCER SURVIVORS/CARETAKERS
Hi Scott,
I am Lori aka MOE, I wanted to let you know my Jeff was diagnosed on April fools day of last year, 45 years old what a shock, went in because our gallblader we thought was giving him problems, and found out after many tests, and finally an EGD that he had EC, we went through 3 rounds of Chemo which was a 5 days straight off 2 weeks then back on it again, we had surgery on July 23, the IVOR LEWIS kind, you didn't mention your kind, they took out 11 lymph nodes, and all were cancer free, he had a rough bout and took him quite while to recoup. He did not have to have radiation as they didn't know what to radiate we had two opinions and both said the same. Fortunately he has had 3 Pet Scans since the surgery and they all look GREAT!!! he has had to learn how to eat all over and has lost about 60 lbs but of course he weighed about 275 to start and now down to 224 so it was okay for him to loose some. He eats pretty much what he wants, he just cant have really stringy food, such as steak, roast, etc like that as they get stuck and then he has to go to ER to have it removed, so he doesn't eat those anymore. It will be a year on April 1, since he was diagnosed, and believe me I was scared to death, until I found this site, and if it was for this site I couldn't have gotten through all this surgery, chemo, and all the mood swings that come along with Cancer, its terrible. He still has the port in his chest and hope to have it out by May, so that he can return to golfing again. He still has his days of not getting to far from the bathroom, and tiredness and of course we always have that fear of the CANCER returning just like you have that fear.
I wish you luck and if you have any questions I am sure I can answer just about anything. I have helped MUMPHY, BETTY70, BETTYINVEGAS, and many more.
I believe Mumphy mentioned William Marshall a 7 year survivor, get ready he will post something eventually and it will be long and in depth. THis man is wonderful if it wouldn't of been for him and his wife I wouldn't have gotten this far along with many of our other EC family.
Just remember we are all here for the same reason, CANCER.
kEEP IN TOUCH
lori aka MOE0 -
Scott,MOE58 said:WELCOME TO OUR FAMILY OF CANCER SURVIVORS/CARETAKERS
Hi Scott,
I am Lori aka MOE, I wanted to let you know my Jeff was diagnosed on April fools day of last year, 45 years old what a shock, went in because our gallblader we thought was giving him problems, and found out after many tests, and finally an EGD that he had EC, we went through 3 rounds of Chemo which was a 5 days straight off 2 weeks then back on it again, we had surgery on July 23, the IVOR LEWIS kind, you didn't mention your kind, they took out 11 lymph nodes, and all were cancer free, he had a rough bout and took him quite while to recoup. He did not have to have radiation as they didn't know what to radiate we had two opinions and both said the same. Fortunately he has had 3 Pet Scans since the surgery and they all look GREAT!!! he has had to learn how to eat all over and has lost about 60 lbs but of course he weighed about 275 to start and now down to 224 so it was okay for him to loose some. He eats pretty much what he wants, he just cant have really stringy food, such as steak, roast, etc like that as they get stuck and then he has to go to ER to have it removed, so he doesn't eat those anymore. It will be a year on April 1, since he was diagnosed, and believe me I was scared to death, until I found this site, and if it was for this site I couldn't have gotten through all this surgery, chemo, and all the mood swings that come along with Cancer, its terrible. He still has the port in his chest and hope to have it out by May, so that he can return to golfing again. He still has his days of not getting to far from the bathroom, and tiredness and of course we always have that fear of the CANCER returning just like you have that fear.
I wish you luck and if you have any questions I am sure I can answer just about anything. I have helped MUMPHY, BETTY70, BETTYINVEGAS, and many more.
I believe Mumphy mentioned William Marshall a 7 year survivor, get ready he will post something eventually and it will be long and in depth. THis man is wonderful if it wouldn't of been for him and his wife I wouldn't have gotten this far along with many of our other EC family.
Just remember we are all here for the same reason, CANCER.
kEEP IN TOUCH
lori aka MOE
You will find the
Scott,
You will find the most encouraging and helpful individuals on this site. It has been a godsend for me as I try to help my 78 year old father navigate these waters. So much comes up that on some days as MOE says you just have to put on those big girl panties and keep on going. Not only will you find valuable information and guidance on this site --- but kindness and compassion. Good luck and keep asking questions and keep the faith miracles do happen.
Cindy0 -
Hang in there, Scott
Hi, Scott. There will be many ups and downs. My hubby, Bill, had chemo/rad last March-May and then surgery in July and he was told he was cancer free. August check up was good, but then he had brain tumors in November which were EC mets. Had those radiated and is doing ok now. Next check up in March if nothing crops up before then. We live on pins and needles if we try to guess what is going to happen next. All we can do is live each day to the fullest, get our affairs in order while we're feeling well enough (physically AND emotionally), and then let it go-- turn it over to the Lord, or the universe, or fate, or whatever you believe. We do discuss our fears, but I determined that I did not want to spend whatever days we have left together crying and fearful... there will be time for that some day down the road.
Hubby also had a portable pump. He didn't like doing it in public either and he also felt trapped by it. Those are just natural feelings. But we were able to travel with it-- yes even on airplanes carrying on the liquid nutrition. Also, for weight gain I recommend Resource Breeze-- a juicelike drink in 3 flavors that's packed with calories and nutrition. It can be ordered from Walgreens.com. Not in the stores.
Do the best you can and love your family.
Jen0 -
Thank you for the infoBJeastOR said:Hang in there, Scott
Hi, Scott. There will be many ups and downs. My hubby, Bill, had chemo/rad last March-May and then surgery in July and he was told he was cancer free. August check up was good, but then he had brain tumors in November which were EC mets. Had those radiated and is doing ok now. Next check up in March if nothing crops up before then. We live on pins and needles if we try to guess what is going to happen next. All we can do is live each day to the fullest, get our affairs in order while we're feeling well enough (physically AND emotionally), and then let it go-- turn it over to the Lord, or the universe, or fate, or whatever you believe. We do discuss our fears, but I determined that I did not want to spend whatever days we have left together crying and fearful... there will be time for that some day down the road.
Hubby also had a portable pump. He didn't like doing it in public either and he also felt trapped by it. Those are just natural feelings. But we were able to travel with it-- yes even on airplanes carrying on the liquid nutrition. Also, for weight gain I recommend Resource Breeze-- a juicelike drink in 3 flavors that's packed with calories and nutrition. It can be ordered from Walgreens.com. Not in the stores.
Do the best you can and love your family.
Jen
Jen,
Thank you so much for providing me with encouragement and information. The emotional side of this equation is fairly staggerig for everyone involved. VERY SCARY STUFF.
I'm working on managing my fears and anxieties. Night time is the worst for me because that's when it's hard for me to settle down. Last night, I think I had my first experience with "dumping syndrome". About an hour or so after I ate a small portion of spaghetti (first time eating that), I laid down on the bed and a few minutes later my wife found me fairly unresponsive to her. It was as if I could hear her, but I had no energy to respond. Finally, after my wife became pretty agitated, did I snap out of it. Very weird and frightening for both of us. I just read about "dumping syndrome" and it sounds like that's what happened to me. Guess I will really be even more careful about what I eat.
Jen, I am so sorry to hear about your husband's turn in November. I will lift both of you in prayer. I am very hopeful things will turn around for you.
Thanks agains for the suggestion of Resource Breeze.
Blessings To You,
Scott0 -
Thank YouTina Blondek said:Welcome to our CSN family
Hello Scott and jacki,
We welcome you with open arms, as you can see from all of our posts. I am a caregiver for my dad, Ray, 71, ec 11-08 with mets to his liver 12-09. Beat the ec cancer, and is now taking chemo to beat the mets to his liver. Thanks to those of you who posted about weight gain methods. This is what i needed to know for my dad as well. He is down to 150, and should be at least 170. I will check out the weight gain powder from GNC. This is a long and bumpy journey. You have to take it one day at a time, and sometimes one hour at a time. You will have good days and bad days. You have to rejoice in the good days. Stay positive. Keep your faith. Having a wife that is so supportive is wonderful. Best of luck to both of you, and please keep in touch. Prayers will be being said for you daily.
Tina
Tina,
Thank you for the response. Your father is blessed to have you fighting for him. I think being a caregiver is a monumental physical and emotional task. It's never easy and wears on the person in unimaginable ways. But, thank goodness he has you and I have my wife. I know I could not do this without her.
When I was leaving the hospital after my esophagectomy and resection, the dietician stopped by and asked me a couple of basic questions. When I asked her a couple of questions, she got a little irritated and said my "home health" agency could handle it. What home health agency?! I don't have an agency. I have my wife. Finally, my surgeon stopped by later and said not to listen to anything the staff dietician said because she didn't know what she was talking about. THAT bothered me. So, Jacki and I have been pretty much left to our own devices about nutrition and weight gain. I am maintaining right at 160 lbs, but I would obviously like to be up a few more pounds...close to 170 lbs would be great. I'm 5'9'' so I could stand a little more meat on my bones.
I hope things go well for you and your dad. My prayer list keeps getting longer and longer. I will do my part on the prayers though. Every prayer helps.
Blessings,
Scott0 -
Watch out for dairy products tooScott_74403 said:Thank you for the info
Jen,
Thank you so much for providing me with encouragement and information. The emotional side of this equation is fairly staggerig for everyone involved. VERY SCARY STUFF.
I'm working on managing my fears and anxieties. Night time is the worst for me because that's when it's hard for me to settle down. Last night, I think I had my first experience with "dumping syndrome". About an hour or so after I ate a small portion of spaghetti (first time eating that), I laid down on the bed and a few minutes later my wife found me fairly unresponsive to her. It was as if I could hear her, but I had no energy to respond. Finally, after my wife became pretty agitated, did I snap out of it. Very weird and frightening for both of us. I just read about "dumping syndrome" and it sounds like that's what happened to me. Guess I will really be even more careful about what I eat.
Jen, I am so sorry to hear about your husband's turn in November. I will lift both of you in prayer. I am very hopeful things will turn around for you.
Thanks agains for the suggestion of Resource Breeze.
Blessings To You,
Scott
Wow, those make Layne just runnnnnn to the bathroom. Over and over and over haha. Sometimes though, he really wants some ice cream...and he pays for it when he does
We are trying to keep him away from sugars, but I won't make him miserable--he does that to himself though when the ice cream kicks in!
Sounds like you are a man of faith, we are also, and I think it helps so much to know that there is strength for you when you have no more....We know we have often been carried when we could no longer walk.
On the eating end--graze a LOT. Layne keeps cashews and other high calorie snacks with him all the time. At the office, he has lots of little things like tuna and crackers, great veggies and fruits, so that he can graze all day. That has helped keep his weight up.
We are also very careful to get his antioxidents in and we moved him to brown rice from white, which seems to help him build weight much more. (and it is better for him.)
Keep us updated.
Betty Johnson0 -
Just went through it myselfScott_74403 said:Thank you for the info
Jen,
Thank you so much for providing me with encouragement and information. The emotional side of this equation is fairly staggerig for everyone involved. VERY SCARY STUFF.
I'm working on managing my fears and anxieties. Night time is the worst for me because that's when it's hard for me to settle down. Last night, I think I had my first experience with "dumping syndrome". About an hour or so after I ate a small portion of spaghetti (first time eating that), I laid down on the bed and a few minutes later my wife found me fairly unresponsive to her. It was as if I could hear her, but I had no energy to respond. Finally, after my wife became pretty agitated, did I snap out of it. Very weird and frightening for both of us. I just read about "dumping syndrome" and it sounds like that's what happened to me. Guess I will really be even more careful about what I eat.
Jen, I am so sorry to hear about your husband's turn in November. I will lift both of you in prayer. I am very hopeful things will turn around for you.
Thanks agains for the suggestion of Resource Breeze.
Blessings To You,
Scott
Scott,
I just came across your post and although I don't regular post I thought i would share with you. Here's my story.
Diagnosed 9/15/09 with EC. PET/CT said the tumor had not spread. Had a mediport and feeding tube put in about a month later - esophagus was completely closed. Started 6 weeks radiation the next week (6 weeks/5 days a week). Had chemo the first and last week in the hospital 5fu (5 days a week/16 hours a day) and Cisplatin (1 day/ 8hrs). Talked to 4 Oncologists and elected not to do surgery. Had PET/CT 2 weeks ago - clean. Had EDG on Friday - clean.
You mentioned that you are a man of faith. So am I. During this whole time I held on to the scripture that says "Let it be according to your faith". As hard as it was during the treatment I put my faith in that when I was done with treatment and they tested me that I would be clean - no more cancer. So far that has held up.
Currently I have no more treatment scheduled. I go to my Oncologist in April to discuss follow ups.
The way I see it is if I am getting checked every 3-6 months then there is a good chance that if something does pop back up that they are going to find it quick and treat it. To me that means I have less to worry about as opposed to it popping back up, me not knowing, and when I finally do find out it is harder to treat.
I know that when I first got diagnosed with this I went out to the internet to look at survivor rates and got pretty freaked out. That was until I looked at when those studies were conducted which was 10 years plus. A lot has progressed since then and treatments are always getting better.
The key is to realize that nobody is promised tomorrow. Live everyday as if were your last. People who are healthy as dogs drop dead the next day or get in a car accident and die. Is this diagnosis serious? Yes, but it is treatable and there are a lot of people out there who beat it and go on to live their lives they way then intended. You just have to intend on the same thing.
As my Oncologist said on my first visit with him - this is just a bump in the road. Don't let it be bigger then that.
Here is a link to my faith based walk through this journey if you are interested: http://www.theabundantlife.net/having-cancer-as-a-christian-135.htm0
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