Esophageal Cancer Support Group

Hi Emily: It's so nice that you are checking things out for your Dad. If he's like I was - during my treatment time, I didn't much feel like researching things. I think you've found a great site to come to, to share & chat about esophageal cancer (EC). Many of us have been where your Dad is. Feel free to read my journal as I talk more about my journey with EC. I was diagnosed as Stage 3 in July 2008. I, too, had a feeding tube during chemo/radiation and all through & up until 30 days after my surgery. If your Dad feels up to it, tell him about this site. He might want to talk to others that went through - or are going through - much of what he is. Adding your Dad & your family to my prayers. Brenda

Hi Emily:

Sorry about your Dad. I was diagnosed with EC in Aug 2004. Chemo and radiation were next, followed by surgery.

I know how hard it is to hear this news, absorb it, and still make informed decisions in a short amount of time. You are doing the best thing you can: gaining knowledge!!! And knowledge, as you will discover, is the best weapon against this beast.

As Brenda said, you might want to see if your Dad might want to get on this site as well. There are many great people who have been where you are now. They will be happy to do whatever they can to help.

One last thing: so much will happeni so quickly, it is often hard to take it all in. You might want to shift your focus to "1 day at a time", or even "1 hour at a time". This can help keep your family from being overwhelmed by it all.

We'll add your family to our prayer list. Also, I'll "friend" you as well. There is a lot of detail in both posts and journals.

All the best,

Fred

Hi emily, you will get lots of support here. we are here to listen, answer questions and say prayers for you. It usuallly goes pretty fast from diagnosis to treatment. it seems like forever but they usually start chemo, radiation as soon as possible. they do seem to run tests that seem to go on forever but they are needed to evaluate your stage. i did not get my feeding tube until my surgery. i lost a total of 55 lbs from start to finish but have gained 20 back. i was diagnosed stage2 in august of 09. it will be 3 years in august. Be there for your dad and get involved with dr visits if you can. i know it was very hard for me to remember everything at my appointments so my husband or another family member was always with me. to take notes. You and your family will be in my prayers.

Emily - information is power and it also makes some order out of the emotional chaos many feel when first diagnosed. I had chemo/radiation, then the Ivor Lewis surgery in 2010 with Stage III and have now had six clean PET scans. I was on a feeding tube for nearly four months following the surgery, but not before. I'll offer my caring bridge web site (still active, only every few months when I get yet one more clean PET): caringbridge.org/visit/nancyedwards1
Nancy

Emily
Continue to educate yourself about treatment. It will prepare you. I was diagnosed July 2011. I was stage 4a. I was immediately put on concurrent chemo/rad. Between the two of the my tumor was killed. I had surgery Jan 2012. I don't know the name of the procedure but they went through a big opening in my abdomen and a big hole on my right back rib area. Surgery took care of the problem. My first post operative scan shows cancer has returned to my liver and tomor (June 26) I will begin chemo again to maintain the spots. Because of the angels on this Board, I have found that many respond to this and live many years in maintenance.

Coming to this board was a good thing for you. You will be supported.

I have prayed for your strength. Stay in the moment. Be where your feet are and do not get too far into the future.

John

Hi Emily,
my husband passed on April 8th from stage 4 esophageal cancer so I totally understand. He too had a feeding tube put in as he couldn't get anything down.

I was giving him Ensure plus as the doctor had wanted him to take in 2200 a day. Ensure plus gives $350 cals per bottle but with the feeding tube my husband just couldn't hold all the ensure he needed per day to make the calories.

I found a great product and its called "Two Cal HN" it was recommended to me by a nutritionist. This product gives 475 a bottle so he needed far less than the ensure. His weight went down to 125 and I got him up with product to 135 before he passed.

I know what you are going through so if you need to vent or if I can give you any advise on caring for your dad please do not hesitate to ask. I battled to find out everything I could so maybe I can be of help.

I know how devastated and scared you are.

Hope you can find some peace. You have come to the right place. People are a great support on here.
Godbless.

Where can you purchase this 2 Cal HN?

I work at a hospital and the cafeteria/dietician ordered it for me. With a prescription you can probably have a medial supply company order it for you or check to see if your doctor works with a nutrionist/dietician that can help you. My husband switches between that and the chocolate walmart generic high cal drink. He says the Two cal is heavy and harder to get in but it does have the necessary calories!

We are all here for you. Prayers to you and your Dad.