Looking for others' experiences with Esophageal Cancer treatments

I agree it is well worth the trip if your health and financial circumstances allow for it. We travelled from Tampa to Mayo/Rochester for a complete work up.

Unfortunately I do not live in the Phoenix area. I live in Maine so as far as the hospital an Doctors for your area I can't help. What I am is a 2 year survivor of Esophageal Cancer. My treatments sounds similar to yours. I was stage 3 when diagnosed. Underwent 6 weeks of chemo and 28 radiation treatments simultaneously. Had a month break and then had surgery to remove my esophagus. My wife was also my champion during my journey. Sounds like you trust your doctors which is great. I was also blessed with a great team. With that being said for me not researching my cancer on the internet was the best option. Chemo and radiation were tough but manageable for me. Surgery will be life changing. It effects so many things that you do on a day to day basis. How you eat, what you eat, how much you eat along with daily activities such as sleeping or even bending over. Do not let that scare you because all the changes are well worth it to survive. If you surgery is like mine you will also need to sleep on an incline to keep food and such from coming up when you sleep. Recovery from surgery will take some time, I was probably two to three months to get back to semi normal after surgery. Listen to you health care professionals but push reasonably hard to get better. Good luck with your journey and if I can help in any way feel free to reach out.

Hey zzonner! Just checking into see how you are doing post radiation & chemo. Has your surgery been scheduled? Hope you are feeling well enough to enjoy the upcoming Fourth Of July weekend - even though it will be a hot one here in AZ! I am here whenever you are ready or feel the need to chat.

Thanks for the note. Did chemo and radiation without any issue until treatment stopped, them two weeks of feeling poopy and loss of appetite. Starting to feel better now. PET scan July 13 and meet with the surgeon July 17. Shooting for mid August surgery? I'd like to take a few weeks off at my cabin in Colorado before surgery but I'll have to see how I feel. I will definitely reach out to you in the next few weeks before meeting the surgeon. Lots and lots of questions, but then again what you don't know won't hurt you. I know there can be a lot of complications but everyone is different. You only hear of the horror stories on the internet. Thanks for reaching out and Happy 4th!!!

Congrats on reaching two milestones getting chemo and radiation finished. I felt great during my first two weeks of radiation, drove myself to appointments, treatments, etc. Then, as they had told me, the cumulative effects kicked in and hit me like a ton of bricks. My wife had to drive me to the next three weeks of radiation. Once finished, it took me a few weeks to get back to feeling normal.

If you can, I certainly encourage you to get a change of scene. If nothing else, it gets your mind cleared out and reinforces that there is more to life than doctors and hospitals.

I’m here if and when you need anything.

Hi! Well we are just 3 weeks ahead of you on a similar regime. My husband NJ is 57 just diagnosed with stage 3 lower esophageal CA ( about 3 inch tumor) at opening of stomach and extending upward. First 4 weeks of weekly chemo and week daily radiation seemed like a breeze! He was still able yo swallow broth and some soft ( not cold) foods. Still happy and seeming enjoying life. Even enjoying my 60th birthday party.
Week 5 and 6 became more challenging . He’s weaker, using his tube for feeding now ( learning curve for him) and just finished radiation this week and I had to take him in to the cancer center for rehydration. He can’t hold tube feed ( Jevity) down or enough water to sustain himself. Nausea is continuous. Vomiting once daily. Slight constipation. He’s on reglan, Pepcid, zofran, Vicodin for the terrible pain( especially when burping or hiccups ouch!) and MiraLAX.
I’m a nurse and he’s not quite the best and compliant patient or husband but I know he’s miserable . Yes, now the 6 weeks til a very unwanted but necessary surgery.
Crazy right? When did all this happen and why so abrupt ? One day life is good, almost retiring and have our needs met and boom!
Anyway , I hope you are able to keep up and do well your last 3 weeks! I can’t say I feel alone in this due to people at church and all over the world praying for him, but it’s helpful to have someone going through it share how they feel .

I just read your response to the other person. I’ve been really trying to research people that I’ve had esophageal surgery. My husband just finished six weeks of radiation to his lower esophagus and six weeks of chemo. He was still eating a little bit, mostly broth and soft foods until week four. Then he had to start using his peg tube. after week five, he could no longer keep things down. Despite all the medication‘s for nausea, he finished his last day of radiation getting IV fluids for rehydration. He’s so miserable and sick now and can’t do any of the tube feeding. I’m trying to keep his medication‘s down with enough water to try to keep him hydrated. But he is too miserable. Any burp or hiccup hurts the heck out of him. He has six weeks of resting and recuperating from the therapy. Then he goes to UCLA for surgery. I’m afraid he’s gonna be too weak for it. They say that in a couple weeks he should turn around a little bit. I think he needs to get pretty strong again before he can endure a surgery like that. I appreciate your encouragement to keep positive and keep going. Not to give up. Everyone is praying for him. He was fairly certain Terry prior to his diagnosis. He cared for his elderly parents here in our home. But I could feel how much smaller his shoulders and body has gotten. He’s lost over 30 pounds now.

Thank you for sharing your story. I can’t believe how similar each person story sounds to my husband. He just finished his six weeks of chemo and 28 days of radiation. But on his last day he had to go in for rehydration IV fluids, because the last two weeks he’s been unable to keep his two beating down. He can’t even keep water down. He’s miserable. Some people have said it takes a couple weeks to bounce back, but we might be in the cancer center for rehydration often. There’s no way I trust him to drive right now. I gave him his medication and he put it through his peg tube. He’s in pain often and of course that can even trigger nausea. He sleep sitting up on the couch. We bought a sleep number bed so that he can sleep at a 45° angle but lately he’s been needing to be 90°. He’s only 57 and was healthy up until this whole cancer started. This definitely is not an easy journey.
He goes to UCLA in mid August for surgery. Looks like August is going to be a popular month for this type of surgery.

Im so sorry to hear how hard it has been for the both of you. I’m praying with everything inside of me that things will turn around for him soon. I know it’s hard, but you have to try to stay positive and keep fighting. You WILL win this battle.

Sorry to hear he is having such a hard time. I was fortunate to only have the nausea issue in the last week of chemo and radiation. I was being stubborn and wouldn't let my wife take me to treatment but had to give in during the last week. I also needed iv hydration for a couple weeks after treatments finished and needed to take a month break before going into surgery. I have found asking for help is something we all need to do during treatments and surgery.
Unfortunately with surgery sleeping will be different for the rest of our lives. I sleep on a foam wedge that keeps anything in your stomach instead of coming up into your throat or into your lungs.
I was 60 when diagnosed and am now 63, I to other than being overweight was otherwise healthy before cancer.
With all that being said it's still worth what we go through to beat this terrible disease. Keep fighting and remember when going through this we are stronger together. Don't be afraid to ask for help. Good luck with your surgery.