Age 32, Stage 4 esophageal junction cancer- surgery?

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RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by Chucksan on Thu Mar 16, 2017 03:07 AM

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Hi, I'm so sorry to hear about your husband's stage 4 esophageal cancer.  I note very importantly that you wrotestage 4.  That means that it is metastatic and as you mentioned has already spread to his lymph nodes and liver.  I don't believe surgery is usually an option for stage 4.  Herceptin (trastuzumab) is an obvious first line choice with an HER2 marker.  Docetaxel (Taxotere) is a good choice for the chemo.  Glad to see he is doing well so far.  You obviously have a good oncologist.

For sleep Benadryl (Diphenhydramine), an OTC antihistamine also the main ingredient in many over the counter sleep meds is a good choice at bedtime. Buy the generic version, dirt cheap at Costco, WalMart, etc.  If your husband has any nausea from the drugs, my wife found prescrition Ativan (Lorazepam) helped a lot but made her slightly sleepy.

If the current treatment slows down in success in the future ask you oncologist about trying one of the new immunolgoy drugs.  See my posts here about my wife who is in remssion after stage 4 lung cancer after clinical trial and then FDA approved Opdivo (Nivoulmab).  I also have friend who is experiencing very good results for his liver cancer with Keytruda (Pembrolizumab). 

Don't forget to take loving care of yourself.  You are the oh so importantCare Giver!

All The Best To You Both!

Chuck

Merck's Keytruda (Pembrolizumab) and Bristol-Myers Squibb's Opdivo (Nivoluumab)

http://www.cancerresearch.org/cancer-immunotherapy/impacting (See under Checkpoint Inhibitors)

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by Aoife on Thu Mar 16, 2017 06:34 AM

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I am no longer really on this site but I saw the post in the round up.  I was also 32 when I was diagnosed with stage 3 query stage 4 esopghageal cancer though mine was squamous cell and it was in the middle.  I had chemo, got married and then had the surgery.  I was very ill post the surgery, not helped by being a type 1 diabetic since childhood.  My surgery was 9th February 2006 and I have gone on to have two children who are 5 and 6.

Best wishes

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by bobbie101 on Thu Mar 16, 2017 02:13 PM

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My husband has completed Proton radiation and chemo and now will have surgery.  Frixon where may I ask did you have the surgery?  My husband's surgeons explained the surgery with both assisting one Chief of Thoraic Surgery and another surgeon who has done 2,000 bariatric surgeries.  My husband is being treated at Univ. of Penn, surgeons said about 3-4 hour surgery with small abdomen incisions and one in neck. I have read of other ways to do the surgery which can last 7-8 hours or more.  We are hoping for the least time in surgery with best results.  Second opinion at Memorial Sloan Kettering regarding robotic surgery but it is an 8 hour surgery and have heard it may not give the best results for recurring.

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by MalloryZ on Thu Mar 16, 2017 02:18 PM

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That is incredible! I'm very happy for you and your family that you are doing well. Thank you for sharing the positive news!

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by Hermannbs on Thu Mar 16, 2017 02:26 PM

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My surgery was about six hours and was done conventially i.e.: it was not laproscopic or robotic. i would want to know their experience and outcomes with esphogeal surgery not their experience with bariatric surgery. Sloan Kettering is a well know cancer center and I am sure that they offer different surgical approaches. That said I would ask them directly about reoccurrence with different surgical techniques. My best to you, your husband and family....

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by Fnixon on Thu Mar 16, 2017 08:40 PM

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I am in Canada and my surgery was done in the South Lake hospital in New Market, Ontario. I believe the assisting surgeon was also training in the procedure.

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by Jimena1 on Wed Mar 22, 2017 09:50 PM

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Hi Fnixon, My husband was diagnosed also with stage IV gastro-esophagus union adenocarcinoma. He had a pathological complete response to chemo and immunotherapy (no malignant cells founded in new endoscopy). We're now seeing surgeon options, but we recently assisted to a stomach cancer symposium for patients and the surgeon said it was really complicated to just take out the upper part is the stomach and that even if it is well performed, you will have further problems with functionality, even worse that with a total gastrectomy. My husband was hoping for a partial gastrectomy and this information was hard to hear. So now that I read your story, I wanted to ask you if you can share if you had any problems with eating, if you loosed weight, if you suffer biliar or acid reflux, etc. You have no idea what a hope for the soul was to read your story. Thank you! Jimena

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by Fnixon on Wed Mar 22, 2017 10:54 PM

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On Mar 22, 2017 9:50 PM Jimena1 wrote:

Hi Fnixon, My husband was diagnosed also with stage IV gastro-esophagus union adenocarcinoma. He had a pathological complete response to chemo and immunotherapy (no malignant cells founded in new endoscopy). We're now seeing surgeon options, but we recently assisted to a stomach cancer symposium for patients and the surgeon said it was really complicated to just take out the upper part is the stomach and that even if it is well performed, you will have further problems with functionality, even worse that with a total gastrectomy. My husband was hoping for a partial gastrectomy and this information was hard to hear. So now that I read your story, I wanted to ask you if you can share if you had any problems with eating, if you loosed weight, if you suffer biliar or acid reflux, etc. You have no idea what a hope for the soul was to read your story. Thank you! Jimena

First of al that is great news to hear about his response to his treatment. Immunotherapy is the great hope for the future. I wish nothing but the best for you and your husband.

The reason I post my story is because what the surgeon told you is definitely not true in my case. Initially it was a challenge to keep my weight up. I initially lost around twenty pounds. Now I am back to my normal 195 lbs and I am careful to make sure that i don't put on weight. I do not have any problems at all and I do take an acid pill once a day. Also I sleep on a six inch wedge pillow and I finish my nightly meal at least three hours before bed time. In my case they removed one third of my stomach and the lower two thirds of my esophagus. They basically make a tube out of the remaining stomach and it replaces the missing esophagus. During this past year I experienced a further improvement in my swallowing ability. Previously in order to eat an apple or similar fruit I would have to peel the skin off because it would get stuck. Leafy salads were out of the question. That has all changed and I am now able to dig into salads with abandon! Additionally I did not suffer the complications that some do early on after the operation. My system was a little rocky for a few months until it adjusted but nothing really traumatic happened. Also when I said a certain food would get stuck, it was unpleasant but it never affected my airway. So I think you can have a very positive outlook to share with your husband. If you have any questions to ask me by PM, don't hesitate to do so.

Best wishes,

Fred

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by Fnixon on Thu Mar 23, 2017 01:53 AM

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On Mar 22, 2017 9:50 PM Jimena1 wrote:

Hi Fnixon, My husband was diagnosed also with stage IV gastro-esophagus union adenocarcinoma. He had a pathological complete response to chemo and immunotherapy (no malignant cells founded in new endoscopy). We're now seeing surgeon options, but we recently assisted to a stomach cancer symposium for patients and the surgeon said it was really complicated to just take out the upper part is the stomach and that even if it is well performed, you will have further problems with functionality, even worse that with a total gastrectomy. My husband was hoping for a partial gastrectomy and this information was hard to hear. So now that I read your story, I wanted to ask you if you can share if you had any problems with eating, if you loosed weight, if you suffer biliar or acid reflux, etc. You have no idea what a hope for the soul was to read your story. Thank you! Jimena

That is very positive that your husband did so well with his treatment. Immunotherapy is a new and amazing approach. 

I actually live a very normal life with no problems. I take one acid pill per day and I sleep on a six inch high wedge pillow. I usually finish my evening meal at least three hours before bedtime. So my outcome is not as described to you by that surgeon. I tell my story because I want people to know that there are positive outcomes.

I initially lost about twenty pounds. Now I am back to my normal weight of 195 Lbs and I watch carefully so that I don't put on weight. I eat everything I used to eat and the really wonderful thing is now I don't experience heartburn.

One of my hobbies is working on my old cars and that takes me under and over the old beasts. In addition it requires some significant physical exertion. None of these activities pose a problem for me. So I would say that you should have a positive outlook. I wish the very best for you and your husband. If you would like to ask more questions, please feel free to do so.

fred

RE: Age 32, Stage 4 esophageal junction cancer- surgery?

by randuzy on Sat Apr 01, 2017 01:42 PM

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Our stories are similar.  My husband had the same chemo medications, and Herceptin (also tested HER2 positive).  I was an emotional wreck. My doctor prescribed for mealprazolam (to take as needed for anxiety)...She also gave me Escitalopram.  The alprazolam (xanax)  makes me too sleepy.  Even if I only take 1/2 pill.  I highly reccomend the Escitalopram.  You take one pill in the morning every day. Before seeing my doctor, I cried all the time, couldn't eat or sleep, or get any everyday chores done.  My favorite side effect of this prescription is that your dreams and heightened and fun, and fantastic.  I loved going to sleep at night.

My husband did have the surgery. The recovery is very slow.  Surgery was 2 months ago.  Life is very different now...

Take care of yourself, you need to be your best.  I'll happily discuss the surgery with you if you'd like

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