Stage 4 survivor
Comments
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Dear Katanna, So good to hear your encouraging news!! My husband was diagnosed last June, stage 4, mets to distant lymph nodes, so he cannot have surgery. He had 19 weeks of chemo, from August until December, and as of today is "NED". Did you have metasis to distant nodes or other organs? Every doctor we're talked to insists that the surgery is not recommended, or not an option since the cancer was elsewhere in the body, and it would only be a "band aid", because eventually it will come back in the liver, brain, or bones. He has PET scans every 3 months, and so far, he's "clean". So we take each day with love and gratitude. I hope you continue to do well, I am sorry you continue to have unpleasant health issues. There should be supplements or nutrition suggestions that could help you. Have you seen a good internist, in addition to your cancer team? Thank you for sharing your story, it gives me some hope.0
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Katanna, I am new to this board. I just saw your message and saw that you were stage IV and were told you didn't have long to live, but I see that you had surgery, which is usually not done with stage IV, and you are surviving. Hooray! I am curious as to your case from the time of your diagnosis to now. My husband has esophageal and GE junction and retroperitoneal node and supraclavicular node involvement, but no other organ involvement, and chemo is markedly decreasing everything after only 4 chemo treatments at Northwestern. Would love to hear from you. Cyndi
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how do you deal????
Hello Katanna, I am very glad to have been directed to this site. My father was diagnosed with stage 4 esophageal cancer last year, he had surgery, chemo and radiation. He is now completely cancer free, however he is suffering some terrible after effects of surgery. Like you he had a large portion of his stomache and esophagus taken out, he was initially hooked to a feeding tube (at least for nights)and during the day he was told to just eat small meals, throughout the day. This worked for a while, however after the feeding keep coming out or going in they decided to just keep it out. He is a very tall man (6'3") and right now only weighs 169, he is having such difficulty with food I just don't know what to do and the doctors don't want to put the tube back in till he loses another 10lbs. I guess my main question to you is how did you deal with this, eating, maintaing a consistant healthy weight, it is extremely frusturating since I don't know what it actually feels like. I finally figured my best bet would be to find someone that had gone through the same thing and see how they did it. I am going to have my father read your post tomarrow morning, because he has been having a lot of really bad cramping were he doesn't want to eat, etc... it is in a way good to know that, that will probably been one of the life long side effects. I would love to hear back from you. Thanks a lot.
kim0 -
My hubby also stage 4 almost 5year survivalkrose4 said:how do you deal????
Hello Katanna, I am very glad to have been directed to this site. My father was diagnosed with stage 4 esophageal cancer last year, he had surgery, chemo and radiation. He is now completely cancer free, however he is suffering some terrible after effects of surgery. Like you he had a large portion of his stomache and esophagus taken out, he was initially hooked to a feeding tube (at least for nights)and during the day he was told to just eat small meals, throughout the day. This worked for a while, however after the feeding keep coming out or going in they decided to just keep it out. He is a very tall man (6'3") and right now only weighs 169, he is having such difficulty with food I just don't know what to do and the doctors don't want to put the tube back in till he loses another 10lbs. I guess my main question to you is how did you deal with this, eating, maintaing a consistant healthy weight, it is extremely frusturating since I don't know what it actually feels like. I finally figured my best bet would be to find someone that had gone through the same thing and see how they did it. I am going to have my father read your post tomarrow morning, because he has been having a lot of really bad cramping were he doesn't want to eat, etc... it is in a way good to know that, that will probably been one of the life long side effects. I would love to hear back from you. Thanks a lot.
kim
My husband was dxed 5 years ago today. He is now cancer free , we are awaiting 5 year mark of surgery 6/01/04. My hubby had the aggressive chemo 5 day fanny pack, 5fu and cisplatin, 6 courses, and 28 days of radiation, cool down period and finally the surgery which almost killed him. But even after all that , he still says he would have done it the same way. My husband is 6'1, and weighs 145, before cancer he weighed in at 217. He too has and is still having problems with the food department, back pain and the list goes on, but for what its worth, he still thinks being like is is, is better than not surviving. There is hope. Kathi0 -
My husband is schedule for Esophageal Cancer SurgeryKathiS said:My hubby also stage 4 almost 5year survival
My husband was dxed 5 years ago today. He is now cancer free , we are awaiting 5 year mark of surgery 6/01/04. My hubby had the aggressive chemo 5 day fanny pack, 5fu and cisplatin, 6 courses, and 28 days of radiation, cool down period and finally the surgery which almost killed him. But even after all that , he still says he would have done it the same way. My husband is 6'1, and weighs 145, before cancer he weighed in at 217. He too has and is still having problems with the food department, back pain and the list goes on, but for what its worth, he still thinks being like is is, is better than not surviving. There is hope. Kathi
Hi,my husband was diagnose with EC 12/23/05 Stage 1, and went through chemo and radiation. He was cancer free until September 16, 2008. The cancer returned and so far we are told it is confined to the Esophagus and into the entrance of the stomach. He is scheduled for surgery
2/23/09 at the University of Michigan Ann Arbor. I wanted to ask those of you who have gone through this, what was required after surgery. The doctor said he would have a feeding tube
and would be on a liquid diet the first 5 days and then they would try him on puddings and yogurt and some kind of protein pudding. I'm wondering what happens when he comes home? How do I know what to fix him for meals. Dr. has said he will only be able to eat small meals maybe six times a day. How long does he have to be on the soft diet. He is 80 years old, very
healthy prior to the EC, he has a workshop is great at making furniture. Would he be able to
continue this? I have so many questions, will I be able to leave him alone to do grocery shopping? What can I expect to happen?
Last June I was diagnosed with Breast Cancer and had that taken care of, And three weeks ago
I had trouble with a bad knee problem. My doctors want to do a knee replacement, but I don't feel I can do that until I know my husband will be able to take care of himself. It just seems everything is happening at once, and I'm on overload. I would like to hear from you all
to give me some insight on what is to come. I will pray for you all, God Bless, SelmaO0 -
Your Encouragement
Thanks for sharing your story. I am new to this. My husband was dx on 7-18-08, underwent his chemo(24/7 fanny back), radiation and ultimate surgery on 11-28-08.That's when Murphy's Law jumped up. You name, he got it. And still he is alive. He is NPO with his J-Tube providing nourishment. He has a fistula from the surgery draining into a absess pocket above his right lung. They are considering a stent in his throat to let the fistula heal and allow the pus pocket to dry up. Anyone go this route?
He's 6ft and always weighed about 185. He is now 145 and doesn't look too bad, but of course I'm crazy about him so I could be prejudiced. It's his physical appearance that is tough. He is on continual oxygen, very short of breathe,(lungs suffered damage from chemo/rad/surgery and he walks with a walker) Again I ask...........has anyone gone this route? Please give us some feedback. We're still hoping for a return to life where we can jump in the motorhome, and head to Lake Powell with our boat.
Any one out there?????????0 -
Take it slowlykrose4 said:how do you deal????
Hello Katanna, I am very glad to have been directed to this site. My father was diagnosed with stage 4 esophageal cancer last year, he had surgery, chemo and radiation. He is now completely cancer free, however he is suffering some terrible after effects of surgery. Like you he had a large portion of his stomache and esophagus taken out, he was initially hooked to a feeding tube (at least for nights)and during the day he was told to just eat small meals, throughout the day. This worked for a while, however after the feeding keep coming out or going in they decided to just keep it out. He is a very tall man (6'3") and right now only weighs 169, he is having such difficulty with food I just don't know what to do and the doctors don't want to put the tube back in till he loses another 10lbs. I guess my main question to you is how did you deal with this, eating, maintaing a consistant healthy weight, it is extremely frusturating since I don't know what it actually feels like. I finally figured my best bet would be to find someone that had gone through the same thing and see how they did it. I am going to have my father read your post tomarrow morning, because he has been having a lot of really bad cramping were he doesn't want to eat, etc... it is in a way good to know that, that will probably been one of the life long side effects. I would love to hear back from you. Thanks a lot.
kim
Hi, I had stage 1v stomach cancer and it had spread to my ovaries and also into the perinal cavity. I had ovaries and part of the fallopian tube removed. The cancer was diagnosis as stomach/esphogaial cancer. They removed my complete stomach and part of my esphogas that was Oct 3,2009. It is difficult to say what foods will work best for your father everyone is different.When was your fathers surgery? For my self I am still learning I try one new food a day so that way if the cramping is bad, I will know what is causing it. I heard it takes your intestines one year before they can act like a stomach and then there is no cramping.
I wish you dad well, tell your Dad congratulation on being cancer free and I hope it will get easier to maintain his weigh.
DJ0 -
Just talk
I am Ron, DJ's husband and caregiver. After the black cloud lifts a little bit, faced with watching lovely wife suffering with after effects. Diagnosed in March 08 at Mayo--complete surprise. Very unusual in that she had weight GAIN and swelling we were trying to find cause of--but stage 3 EC. Went thru chemo and radiation, then surgery on Jul 7 08. Oddly, never lost weight, still has bouts of swelling, and is waked up almost every nite with coughing spells that sometimes end in throwing up. Thankfully she is cancer free so far--no energy, hard to eat, etc etc. Sounds like this is inevitable problem. Grateful, though, for her being alive and free from dreadful disease so far. We seek to encourage and be encouraged--thank all who share, and any information or experiences help. Thank all of you.
Ron0 -
Katanna - how are you doing?
My friend was recently diagnosed with Stage IV cancer, here in NYC. He just started chemo this week and I was wondering how you are doing and if you (or anyone else) had any advice to give in the nutritional area. We are new to this. Thanks, J.0 -
Thanks for this post
I have never posted here before, but I have read your post many times when I'm just terrified. My hubby has stage iv to the nodes, and though he is doing very well in therapy (perfect blood counts, did his primary chemo, now is on proton rad and chemo prepping for surgery) I sometimes have these moments of sheer terror. Your post has helped me so much.
Can you tell me if your response to your chemo and rad was also good? Did you lose weight? (My husband has not, in fact, they told us to fatten him up, so we have.)
Betty from Vegas, now temporarily in Houston for radiation0 -
New
Hi Katanna,
Thank You for sharing your story. I came here looking for hope and found you. I know god is at work. I was diagnosed with stage 4 esophgeal cancer June 18, 2009. I have been in Chemo and radiation for 6 months. Since then nothing is visable on my scans and I am now able to eat. I gained 30 pounds on Chemo..lol Never thought I would be sooo happy about that!
My Doctor is a bit confusing though. She said nothing is visable but she knows the cancer is still there. How does she know that? She keeps talking about making me comfortable but Im not uncomfortable and havent needed anything for pain anywhere. I skated through Chemo with very little side effects.
I have my last scan after chemo Dec 26 and they say a scan every 2 months after that until the cancer starts to grow again. (Again..How do they know thats going to happen?)
Anyway. Like I said I was looking for hope. You gave that to me for today.
Thank you0 -
newSherrybaby2you said:New
Hi Katanna,
Thank You for sharing your story. I came here looking for hope and found you. I know god is at work. I was diagnosed with stage 4 esophgeal cancer June 18, 2009. I have been in Chemo and radiation for 6 months. Since then nothing is visable on my scans and I am now able to eat. I gained 30 pounds on Chemo..lol Never thought I would be sooo happy about that!
My Doctor is a bit confusing though. She said nothing is visable but she knows the cancer is still there. How does she know that? She keeps talking about making me comfortable but Im not uncomfortable and havent needed anything for pain anywhere. I skated through Chemo with very little side effects.
I have my last scan after chemo Dec 26 and they say a scan every 2 months after that until the cancer starts to grow again. (Again..How do they know thats going to happen?)
Anyway. Like I said I was looking for hope. You gave that to me for today.
Thank you
My father was diagnosed with stage IV esophogeal cancer November 10th, 2009. It has spread to the lymphnodes and stomach. He begins chemo and radiation next week. And they are saying that after chemo and radiation he will take a 4 week break and then surgery. He has a 6 year old son and then there is my sister and I. He carries around a survival story in his pocket. So I have been searching for stories that will inspire him. This is all very new to me and I'm still struggling to find out exactly what is happening. It's been wonderful to read all of your posts.0 -
Need Advicecherseg said:Dear Katanna, So good to hear your encouraging news!! My husband was diagnosed last June, stage 4, mets to distant lymph nodes, so he cannot have surgery. He had 19 weeks of chemo, from August until December, and as of today is "NED". Did you have metasis to distant nodes or other organs? Every doctor we're talked to insists that the surgery is not recommended, or not an option since the cancer was elsewhere in the body, and it would only be a "band aid", because eventually it will come back in the liver, brain, or bones. He has PET scans every 3 months, and so far, he's "clean". So we take each day with love and gratitude. I hope you continue to do well, I am sorry you continue to have unpleasant health issues. There should be supplements or nutrition suggestions that could help you. Have you seen a good internist, in addition to your cancer team? Thank you for sharing your story, it gives me some hope.
Hello there,
Wondering what else you did to become a cancer survivor.
How old are you? My mother was recently diagnosed but is over 80
so they will not operate. She also is at stage 4 and in no pain.
She's wondering what the family is fusing about--radiation and
chemo start next week.. Has your diet changed? Any other advice
can you offer?
Thank you.0 -
Sherrybaby2youSherrybaby2you said:New
Hi Katanna,
Thank You for sharing your story. I came here looking for hope and found you. I know god is at work. I was diagnosed with stage 4 esophgeal cancer June 18, 2009. I have been in Chemo and radiation for 6 months. Since then nothing is visable on my scans and I am now able to eat. I gained 30 pounds on Chemo..lol Never thought I would be sooo happy about that!
My Doctor is a bit confusing though. She said nothing is visable but she knows the cancer is still there. How does she know that? She keeps talking about making me comfortable but Im not uncomfortable and havent needed anything for pain anywhere. I skated through Chemo with very little side effects.
I have my last scan after chemo Dec 26 and they say a scan every 2 months after that until the cancer starts to grow again. (Again..How do they know thats going to happen?)
Anyway. Like I said I was looking for hope. You gave that to me for today.
Thank you
Wow-your story has given me hope for my mother.
He is at stage 4 and starts chemo and radiation next week.
My mother is in no pain and eats pretty well! Any other
advice for her? The only thing against her is her age.
Nice to know you've recovered without surgery! Who was your dr?
Dietz0 -
Chersegcherseg said:Dear Katanna, So good to hear your encouraging news!! My husband was diagnosed last June, stage 4, mets to distant lymph nodes, so he cannot have surgery. He had 19 weeks of chemo, from August until December, and as of today is "NED". Did you have metasis to distant nodes or other organs? Every doctor we're talked to insists that the surgery is not recommended, or not an option since the cancer was elsewhere in the body, and it would only be a "band aid", because eventually it will come back in the liver, brain, or bones. He has PET scans every 3 months, and so far, he's "clean". So we take each day with love and gratitude. I hope you continue to do well, I am sorry you continue to have unpleasant health issues. There should be supplements or nutrition suggestions that could help you. Have you seen a good internist, in addition to your cancer team? Thank you for sharing your story, it gives me some hope.
Dear Cherseg:
My mother also cannot have surgery. She has one node
affected so far and chemo and radiation start next week.
What can we expect? Is 19 weeks typical?
What types of supplements have been recommended to your husband?0 -
Hi Dietz,Dietz said:Sherrybaby2you
Wow-your story has given me hope for my mother.
He is at stage 4 and starts chemo and radiation next week.
My mother is in no pain and eats pretty well! Any other
advice for her? The only thing against her is her age.
Nice to know you've recovered without surgery! Who was your dr?
Dietz
My father was
Hi Dietz,
My father was diagnosed in December 2009. He started chemo in January and radiation to the arm (the cancer spread to his bone in the arm). He finished his first cycle of chemo and is starting a second round tomorrow. The oncologist who they saw today said he's responding well. He's even swallowing better which the doc said was very promising. Stay hopeful... it's been difficult for me to live in the moment (I'm a planner!!), but I've learned it's the best way to emotionally deal with the big "C." I wish you well in your journey. I'm glad you found this site!0 -
thank youSherrybaby2you said:New
Hi Katanna,
Thank You for sharing your story. I came here looking for hope and found you. I know god is at work. I was diagnosed with stage 4 esophgeal cancer June 18, 2009. I have been in Chemo and radiation for 6 months. Since then nothing is visable on my scans and I am now able to eat. I gained 30 pounds on Chemo..lol Never thought I would be sooo happy about that!
My Doctor is a bit confusing though. She said nothing is visable but she knows the cancer is still there. How does she know that? She keeps talking about making me comfortable but Im not uncomfortable and havent needed anything for pain anywhere. I skated through Chemo with very little side effects.
I have my last scan after chemo Dec 26 and they say a scan every 2 months after that until the cancer starts to grow again. (Again..How do they know thats going to happen?)
Anyway. Like I said I was looking for hope. You gave that to me for today.
Thank you
Katanna and Sherry,
Thank you for your uplifting posts. My dad, who is 62, who diagnosed with stage IV EC on Friday. We are devastated and looking for anything that can provide us hope. Please keep all of us updated on your treatment.
Hugs,
Jessica0 -
Walking Miracle !jessicalla said:thank you
Katanna and Sherry,
Thank you for your uplifting posts. My dad, who is 62, who diagnosed with stage IV EC on Friday. We are devastated and looking for anything that can provide us hope. Please keep all of us updated on your treatment.
Hugs,
Jessica
I was diagonised Stage IVb Esophagus Cancer metastasized to Lymph Nodes and Liver at age 41 on 7/07 and given 6 months to live which followed with aggresive pallative chemo till 11/07 (but supplemented together with detox, colonics, 100% raw diet, multiple supplements, flooding & feeding body with living juices, ayurvedic, homeopathic and what not - you name it I did it - with faith and prayers to live for my family) my tumor shrink from the size of closed fist to a small 50c coin (nobody believed it could be possible, but it sure did. In 03/08 I was given the option of drastic surgery (since not having any other medical condition and being the only option available for me if I wanted to survive any longer). I took my 50/50 chance and had multiple surgeries when my total stomach was removed with lower part of esophagus, plus removal of 45 lymph nodes and liver resection (removed segment 2 and 5). I must say that now over 2 years after surgery I do have quite a few health issues and complications with the damage done to my body due to aggresive chemo and multiple surgeries. Also have a life-long dependence of J-tube feeding adjusted to prrvent malnutrition which keeps me going as I take each day as it comes and enjoy the extra extended bonus time. BTW my post treatment weight was down to 132 lbs which I've regained close my original weight of 176 lbs. I would like to say everyone fighting against cancer that ANYONE can achieve and DO what I did with the right attitude and making the right choices to REGAIN back your health and FIGHT CANCER...its possible.
Cheers,
Max0 -
bless youMaxNZ said:Walking Miracle !
I was diagonised Stage IVb Esophagus Cancer metastasized to Lymph Nodes and Liver at age 41 on 7/07 and given 6 months to live which followed with aggresive pallative chemo till 11/07 (but supplemented together with detox, colonics, 100% raw diet, multiple supplements, flooding & feeding body with living juices, ayurvedic, homeopathic and what not - you name it I did it - with faith and prayers to live for my family) my tumor shrink from the size of closed fist to a small 50c coin (nobody believed it could be possible, but it sure did. In 03/08 I was given the option of drastic surgery (since not having any other medical condition and being the only option available for me if I wanted to survive any longer). I took my 50/50 chance and had multiple surgeries when my total stomach was removed with lower part of esophagus, plus removal of 45 lymph nodes and liver resection (removed segment 2 and 5). I must say that now over 2 years after surgery I do have quite a few health issues and complications with the damage done to my body due to aggresive chemo and multiple surgeries. Also have a life-long dependence of J-tube feeding adjusted to prrvent malnutrition which keeps me going as I take each day as it comes and enjoy the extra extended bonus time. BTW my post treatment weight was down to 132 lbs which I've regained close my original weight of 176 lbs. I would like to say everyone fighting against cancer that ANYONE can achieve and DO what I did with the right attitude and making the right choices to REGAIN back your health and FIGHT CANCER...its possible.
Cheers,
Max
Bless you Max!! Thank you for sharing your story. I know my dad will fight this thing like you have. You two have a lot in common- a lot to live for and a fighting spirit. You are in my thoughts as you continue to live with the health issues that are a result of the surgeries. Thank you again for posting your story.
Jessica0 -
great post----CONGRATSMaxNZ said:Walking Miracle !
I was diagonised Stage IVb Esophagus Cancer metastasized to Lymph Nodes and Liver at age 41 on 7/07 and given 6 months to live which followed with aggresive pallative chemo till 11/07 (but supplemented together with detox, colonics, 100% raw diet, multiple supplements, flooding & feeding body with living juices, ayurvedic, homeopathic and what not - you name it I did it - with faith and prayers to live for my family) my tumor shrink from the size of closed fist to a small 50c coin (nobody believed it could be possible, but it sure did. In 03/08 I was given the option of drastic surgery (since not having any other medical condition and being the only option available for me if I wanted to survive any longer). I took my 50/50 chance and had multiple surgeries when my total stomach was removed with lower part of esophagus, plus removal of 45 lymph nodes and liver resection (removed segment 2 and 5). I must say that now over 2 years after surgery I do have quite a few health issues and complications with the damage done to my body due to aggresive chemo and multiple surgeries. Also have a life-long dependence of J-tube feeding adjusted to prrvent malnutrition which keeps me going as I take each day as it comes and enjoy the extra extended bonus time. BTW my post treatment weight was down to 132 lbs which I've regained close my original weight of 176 lbs. I would like to say everyone fighting against cancer that ANYONE can achieve and DO what I did with the right attitude and making the right choices to REGAIN back your health and FIGHT CANCER...its possible.
Cheers,
Max
great post----CONGRATS Max!!!
I love what you have to say about attitude---the glass half-full!
Let me add a quote (or 2):
-"Once you choose hope, anything's possible".
~Christopher Reeve
"A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort."
~ Herm Albright, quoted in Reader's Digest, June 1995
Kim0
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