Stage 4 survivor

tillyrae13 said:

wondering
Hi

This is my first time writing and your post stuck out to me. My dad was just diagnosed with stage 4 EC and it has spread to his liver. He started aggressive chemo this past week in Boston. My dad is a healthy 54 year old guy. Like your husbands doctors, his dr's also said surgery isn't an option. He's part of a clinical trial now and we're all hoping and praying. I'm just wondering if you (or anyone else out there) perhaps has any advice or encouraging words while going through this.


Thank you

This is my first time too.
This is my first time too. My dad was diagnosed in Oct 2010 as stage 3 and had surgery and one month later found out that his PET scan prior to surgery was misread and he really has stage 4 with rib and lymph node involvment. Can your dad eat? The best advice I can give is get him to eat and eat healthy nutrious foods and stay hydrated. My dad has lost 70 pounds since last summer when he started having problems. The cachexia (wasting syndrome) is one of the hardest hurdles to over come. Now my dad can physically eat since having surgery but can't due to the wasting syndrome. My dad is currently trying the holistic method at a clinic in NC. He was very against coventional medicine after the huge mistake on the PET scan. Another piece of advice is to try not to worry about tomorrow and miss the beautiful today. This is a tough road and it will have it's ups and downs, all you can do is never lose hope and always stick together!

rayna622 said:

congrats!
Hello. I am desperate for some answers and if you have any info it would be greatly appreciated! My uncle has just had the EC removed and he is now talking out of his mind and hallucinating..apparently it is bc they switched his meds. He is acting as if he has alzheimers or sundowners. Is this the end of the road?

Thank you so much,
Rayna

hallucinating
Dear Rayna,

It is not abnormal for people to become paranoid or hallucinate with some of the medications they give to you after surgery. My husband did this and it only lasted for a couple of days. It is very frightening, but it will pass.

I hope this helps you.

Linda

tillyrae13 said:

wondering
Hi

This is my first time writing and your post stuck out to me. My dad was just diagnosed with stage 4 EC and it has spread to his liver. He started aggressive chemo this past week in Boston. My dad is a healthy 54 year old guy. Like your husbands doctors, his dr's also said surgery isn't an option. He's part of a clinical trial now and we're all hoping and praying. I'm just wondering if you (or anyone else out there) perhaps has any advice or encouraging words while going through this.


Thank you

Hello,
I am really sorry
Hello,
I am really sorry that you find yourself here.
My husband was diagnosed three weeks ago with EC and I know what you are going through.
I just wanted to post a link for you from a leading hospital in the UK where they trial
cancer treatments.
http://www.livercancer2.com/cancer-stricken-grandfather-given-just-12-months-to-live-sees-tumours-killed-in-two-days-after-breakthrough-treatment.html
Addenbrooks Hospital in Cambridge England is a well respected hospital with a proven track record. I just wonder if your oncologist could be tempted into finding out what the treatment was and how it was administered.
I don't know if it helps, but I will pray for you.
Hugs and prayers
Marci

cyn0418 said:

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

Hello Cyn
Cyn, I feel for you. I am a caregiver too with a husband newly diagnosed with EC lower esophagus. We don't know the stage yet as we see the Onco for the first time on Thursday.
I would love to keep in touch and swop respective worries and fears.
This is such a scary time for us all.
Would you please add me as your friend.
I will keep you and your husband in my prayers.
Hugs
Marci

Sharrae Kidd said:

New
Hello everyone I was hoping I could get some help, information, from people that have gone through this diagnosis. My sister is 31 years old and was just diagnosed two months ago with stage 4 esophageal cancer. The cancer is in lymph nodes as well as her lungs, stomach, and spine. She had a stint put in about a month ago and surgery is not a option for her. My sister is about to have her third round of chemo and as she has 24/7 chemo fanny pack that is given through iv. My sister has a 10 month old baby as well as a 3 and 7 year old. I am finding it really hard to find groups to help with payment of medications and help in general to the family. Does anyone know if there are grants or any assistance to young couple that something like this happens to? I would appreciate any help that anyone can offer to tell me. Thank You all so much for your time and good luck with your battles. God Bless You All!!!!

God Bless you All
Hi Sharrae,
I thought that my husband and I were badly off until I read your post. I am so so sorry for you and your sister.
I will pray for you every day and hope that things will improve.
I am not sure, but have you thought of perhaps going to the lottery headquarters and asking for help. I know they have a lot of funds for charitable causes and personally, I can't think of a better cause than the mother of three small children.
Also, Addenbrooks Hospital in Cambridge England does many clinical trials for all cancers.
They have recently had some wonderful results, here is a link
http://www.livercancer2.com/cancer-stricken-grandfather-given-just-12-months-to-live-sees-tumours-killed-in-two-days-after-breakthrough-treatment.html
Maybe it would be possible to get them to help.
God bless you and your family
Hugs
Marci

unknown said:

This comment has been removed by the Moderator

Thank you all
As a caregiver for my husband newly diagnosed with EC, I just wanted to say a huge thank you to all of you who have given me encouragement on these past few dark weeks. Please stay with me as I did not have any peace of mind until I stumbled in here in the middle of the night. I don't feel so alone now.
So thank you, thank you all!
God Bless You
Marci X

Congrats on 5 years !!
Katanna thankyou for posting and it is great to hear this positive post. I compliment you on your determination on when the docs said no you said yes i can. You showed them , maby it was a mind set that you have . I have come by a couple hear that have got lucky if you would and have passed the marks way beyound there dreams . Keep up the positive attitude!




Jason

json_2011 said:

Congrats on 5 years !!
Katanna thankyou for posting and it is great to hear this positive post. I compliment you on your determination on when the docs said no you said yes i can. You showed them , maby it was a mind set that you have . I have come by a couple hear that have got lucky if you would and have passed the marks way beyound there dreams . Keep up the positive attitude!




Jason

Pay attention to the posting dates my friends...
Jason,

I don't know Katana's status at this point, but I can tell you that this posting is nearly 3 years old. Please pay attention to the original posting dates on these postings.

Regards,
-Michelle

json_2011 said:

10-4
I see Michelle on the post the date , funny I wonder who posted this then ? Anyway I think alot of this started when i posted on how long some might survive this. I like to think of this sight as its name - even though stage 4 is not good. I did find a couple of long time survivors here on this site , as i posted once before. Just trying to stay positive for the ones who need hope.




Jason

Jason
I think alot of us here get a bit funny about Katana. She only posted the one time, never any updates since this post. Also, many of us find it a bit suspicious that she had surgery. As you know, from your mom's case as well as everyone else here, the plain truth is that stage 4's just don't get surgery. She could more likely have been a stage 3 and misrepresented herself unintentionally.

Of course we all want hope, and no one begrudges you that Jason. There are certainly some that survive a few years, and we all strive for that goal. Be realistic, but don't give up hoping and praying! Lee and I had huge hopes and dreams at one point too, and there's nothing wrong with that, as long as it doesn't cloud reality.
Chantal