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esophegus cancer survivors

gugi1965
Posts: 16
Joined: Nov 2012

Hello, my name is Julia. I am writing this to find out if we are alone in this journey. My husband was diagnosed in Aug. 2010 with stage 4 esophegus cancer that had already spred to his lymphnodes and liver. He is doing great and we don't know why. He had radiation in the begining and has chemo every week. Please let me know if their are anyone else living this long and doing so good. His Dr. told him he would not be alive this long and now they do not know why he is still alive.

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

Hello, Julia and welcome to the EC Family. First off, you are NOT alone in this journey. In fact, your story sounds much like my Dad's. He was also diagnosed in August of 2010 as Stage IV and inoperable. He was also told then that he wouldn't be alive today, but here we are and he is managing EC quite well. I'd love to talk more about your journey. Please keep in touch!

~Jayme

gugi1965
Posts: 16
Joined: Nov 2012

omg! I have just found this group after so long! It is a miracle my husband is still alive. His first Dr. told him 3-6 months and here we are!! I keep him going with just day to day positive pushing to get up and LIVE!! I know it sounds corny but hey.. can't explain it. I have been looking for more survivors to tell him about. Thank-you for responding so quick! I work nights and this is my alone time!!Please let's keep in touch. We live in MI.

goty2001
Posts: 71
Joined: Jul 2012

I'm a bit behind you two, having only been diagnosed in June. However my condition & treatement regime are similar to your Dad's, Anjomom. My first scan results was great - shrinkage & some nodes on liver gone ... but I'm still inoperable stage IV. I'd love to hear about any complementary treatments your patients are on - diet, supplements, other medicines etc?

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

I will send you my personal email. Do you have a Facebook account?

Lottie12
Posts: 5
Joined: Oct 2012

Wow, what positive stories. My husband has recently been similarly diagnosed, also with liver mets, so all good news stories gratefully received

Lottie

gugi1965
Posts: 16
Joined: Nov 2012

Hi, I don't know what to say except just stay as positive as you can and try to eat as many fresh vegetables and fruits as you can,I found out black rasperries and dehydrated strawberries are good for esophegus cancer.We also are on a lot of prayer groups even though we don't make it to church a lot. Please reply back. Glad to have finally found some good positive stories.

englishlady
Posts: 10
Joined: Sep 2012

My story is similar to you. My husband was diagnosed in February he also was given 3-6 months, he had 10 sessions of radiation and has just had his 7 round of chemo, his last scan was good everthing shrinking, hoping for another good scan in January. The doctor was amazed how well he is responding to treatment. Trying to stay positive. It is so uplifting to hear other positive stories.

lyndez
Posts: 22
Joined: Apr 2011

My husband is also a stage 4 EC survivor. He was diagnosed in January 2011 and has completed chemo in September 2011 and he had 10 radiation treatments. So far he is feeling great. He is doing alternative medicine such as vitamin C,and many other supplements. Our life is back to normal and we have changed our diet drastically.

Keep up the fight.

Take care

Lynne

gugi1965
Posts: 16
Joined: Nov 2012

Hi thanx for the reply. what kind of alternative meds are you doing? I need all the help I can get.They told us Mike would be on chemo for the rest of his life. is your husband too? Mike has been fortunate to handle chemo very well but is tired, no energy but I push real hard to get up and move the body. He is 45 yrs. old. Our life is back to normal too but it just lurks in the background always. Please reply back to me. I don't have nobody to ask this stuff too and I am alone with no family nearby. Thanx so much.

lyndez
Posts: 22
Joined: Apr 2011

My husband has not been on chemo since September 5, 2011. The chemo he was on was Cisplatin and 5FU for 96hrs every 4 weeks. As far as naturopathic he did 85,000mg vitamin C IV twice per week for 6 months. The supplements he now takes are wheatgrass, vitamin c by mouth, a good multivitamin, milk thistle, vitamin B and D. He is also taking low dose naltrexone at bedtime, I would suggest that you look this up, just google LDN and try to get his doctor to prescribe it because my sister is also a stage 4 breast cancer metastasized to the lung, bones and brain and she was on life support last December and she is now working full time, thanks to LDN. The key to fighting cancer is to keep the immune system up so your body can fight and also to stay alkaline from the food you eat, I also I would like to add that I juice fruits and vegetables daily such as carrots, beets, green apples, broccoli etc.

Take care. Lynne

goty2001
Posts: 71
Joined: Jul 2012

Lynne
When I read details of the regime for a moment I thought my wife had posted about me ... very similar except the LDN - I had researched it and thought it might be something for when I'm done with chemo ... but now thinking maybe I shouldn't wait. Does your husband get it prescribed by the oncologist, or with his approval?

lyndez
Posts: 22
Joined: Apr 2011

Hi goty2001

No, the oncologist does'nt know what we are doing, because most don't believe in alternative medicine, but I work for a family doctor therefore, I was able to convince him to write a prescription for LDN. We live in Canada but I get it from Irmat pharmacy in New York City. I would encourage you to get a prescription for it as soon as possible, we did'nt wait and my husband was on chemo when he started it and as I always mention, he worked 7 days a week while undergoing chemo. Good Luck.

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

We all look for survivor stories to buoy our hopes. I was diagnosed stage 3 march of this year so I was eligible for esopghgetomy thank the man above. After 6 weeks of chemo and 28 radiation treatments, We thought I might be clear but it has shown up in additional lymph nodes and questionable nodels on the lung so now I am stage 4. We are starting additional chemo now. The first round has reduced the size of the nodes I can feel. So I am hopeful the reduction will continue.

We are using 5FU and cisplatin right now. We originally talked 2 rounds but I assume more are in my future. How often are you going through chemo?

gugi1965
Posts: 16
Joined: Nov 2012

You are right about how we are all looking for survivor stories. I just found this group so I feel happy to hear other miracles in the making. You can bet there will probably be more treatments in your future, but think about it like this... it is gonna keep you alive and with the right DR. and chemo cocktail it should help keep it at bay. Our Dr. told us they are treating cancer like any other disease, treating it to keep it from spreading. So far it has worked for my husband. He gets chemo every week now for his liver mets. and it ahs really helped. He can still eat which is good.Keep me updated. Stay very positive and make sure those around you are also positive. it does matter.

jaycc
Posts: 131
Joined: Jul 2012

It is wonderful to hear your story, and the strength in your positive attitude. Can you tell me, where is he being treated, is he on Chemo only, or Chemo and radiation ?

Macca_Loz
Posts: 21
Joined: Oct 2012

Julia, your post is very uplifting. My husband was diagnosed in August this year and has Stage IV with liver mets. I was just crying my heart out because we feel like our whole world has turned upside down. He has just today finished his third cycle of cisplatin and 5FU - has another 3 cycles to go. he will be rescanned during his 4th cycle so i am praying hard and trying my best to stay positive that the rescan will show a change for the better. I log onto this website (we are in Australia) to read the posts as they inspire me with more positivity when i read about people such as your husband doing so well after treatment. thank you for posting such a positive comment. I will try and remain strong and keep my prayers going madly for my husband and everyone else that is on the site. Lorraine

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LauraandLarry
Posts: 184
Joined: Sep 2012

Welcome Julia, I joined this site in September and have used it as my first "go to" site when I have a question or concern. It is a wonderful site with so much first hand info. I hope you find this place as useful as well. Hopefully you have sought out Cancer Treatment Center, and have other opinions. Never, ever lose hope and chose a Dr. that will never give up as well. My husbands Dr. doesn't have the greatest personality but is a genius and is known for never ever giving up. We recently met a 2 year survivor of stage 4 with liver mets who was inoperable as well. His recent scans have clear. I cant say that the road has not been rough but he is alive and even has returned to work part time. Keep the faith.

gugi1965
Posts: 16
Joined: Nov 2012

Dear, Laura and Larry, We are not eligible for the Cancer Treatment Center and I was very insulted by one of the customer reps when I spoke to them. Unfortuneatly, my husband at 43 did not think he would get any cancer so we didn't buy health ins. He had his own company and so on... but hindsight is foresight in this case. We are at our witt's end right now but I will refuse to give up!! I am positive and a fighter for this horrible disease he has! I push him every day to move. I truly believe in prayer and we have had a good Dr. up till now when they informed us they can't do anymore so we have to go to the University of Michigan for the next phase. Can you tell me about what kinds of foods to eat for liver mets?? Thank-you, we are not giving up!!!!!

DelForbes
Posts: 1
Joined: Dec 2012

Hi. Hope you are doing okay.I went to the Juravinski Cancer Center in Hamilton Ontario and was given seven weeks of radiation to my Larnyx.I wouldn't wish that on someone I hated with a passion.It got rid of the cancer but cooked my throat like you wouldn't believe.I was told I would be taught to talk again and what to eat and what to avoid.None of this proved to be true.Every three months they ram a tube down my throat and say no cancer come back in three months.I quit going back.No help with the sticky brown mucus that chokes me so bad I had to go to the emergency room because I couldn't breath in the middle of the night.They didn't tell me I'd need Eltroxin to replace the stuff my Thyroid doesn't produce anymore.I still can't find a way to get rid of the mucus(Thick,brown and sticky as heck that sticks to my throat.)I'm terrified to go to bed at night now.Can anyone help me with any info.It would sure be appreciated.I wish you all a Merry Xmas and a Happy New Year.Hang in there and quit fighting. Del.

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

Welcome to the EC Board, Del. I'm sorry you're here, but glad you found us. I will do my best to get answers for your questions. Hang in there! I'll be back soon.

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

Hello Dell,

I am so sorry that you are having difficulty after your treatments. I have no personal experience with this medication but several people in our forum take a medication called Mucinex (Guaifenefin) for mucus at night. My understanding is that there is a over the counter strength and a perscription strength. 

 

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009                  T2N1M0  Stage IIB
12/03/2009                         Ivor Lewis
2/8 through 6/14/2010       Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Three year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!
 

 

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Hello Julia, I had surgery the THE surgery in January of this year at the University of Washington and was fortunate enough to have been diagnosed very very early. I was diagnosed so early in fact that when they performed the pathology on my esophagus they found no cancer and none of my lymph nodes had any involvement. I was blessed and as my doctor says I now have the same chance of dying of cancer as she does. I always feel guilty when I mention my survivor status on here as most here have not been as fortunate and blessed as I. I also have two cousins who are longer term survivors one had stage IV and one was in a similar situation as me but both are over six years since surgery.

Dave

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Dave,

I too wish everyone that came to CSN had the same outcome as you, Dave. But you should never feel guilty. You are truly BLESSED to have had the fortune of having an attentive and alert doctor. I wish we all had such alert and aware physicians.

Every day that someone beats this damned EC beast, I believe we all win.

Hugs to you and the family, Dave! Keep on keepin' on :)

Terry
PROUD wife to Nick, age 49
lost EC battle, June 19, 2012

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Hi, Julia and welcome to our group that no one wanted to join. We love survivor stories and it is great to hear your husband has passed the 2 year mark! What chemo(s) has he been on?

My husband was diagnosed Stage IV with supraclavicular lymph nodes involvement in June 2011. He is doing well. His swallowing issues went away after the first round of chemo. His regime from Jul thru Dec was Oxaliplatin and Xeloda on a 3 week cycle. The day before he was scheduled to start Taxol in Jan, we went to the ER and (with no previous cardiac history) he was determined to need quadruple bypass surgery. Thankfully his surgeon did not just write him off as a Stage IV and he recovered well. His CT after the 3 months off chemo showed slight improvement! From March until June he and I (for BC) each had Taxol every Tues. His scan after that showed "dramatic improvement." So, he has been off chemo since the first of June. A CT Oct 1 showed stable. He will have a PET before the year is over, and, fingers crossed, it will be OK.

Do you have a local or other source for black raspberries or freeze dried strawberries? Since I read about the EC/berry connection about a year ago, we've been having fresh strawberries, red raspberries,or blueberries at least 4 or 5 days a week. I can find black raspberry capsules locally. I would really love to know a reliable source (so hard to know when internet shopping) for black raspberry extract or freeze dried strawberries.

Angie

Glombardo
Posts: 3
Joined: Dec 2012

Hi gang,

my dad was diagnosed with stage IV esophageacan cece this week. It's been a roller coaster with Christmas and having to wait the extra days for results. He is in Boston and is being treated at the Dana Farber Center at Brigham and Women's hospital. Anyone have info on this? 

He is being intentionally vague with us (his adult kids), but we know this is pretty horrendous news. Cancer in ,over and a little in his stomach. They are inserting a port on Wednesday and starting chemo shortly thereafter. The type of chemo is unknown as they are waiting for HER receptor blood results. 

Any hints on support would be very appreciated. Thanks all. 

Glombardo
Posts: 3
Joined: Dec 2012

I apologize for all the typos in my last post. Crying while typing on an iPad is a very bad combination as far as literacy is concerned...

grace

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