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My husband diagnosed 4 weeks ago -Esophageal Cancer- HELP
Hello,
I am looking for advance and success stories to help us navigate this difficult journey. My husband, just 50, started this journey not feeling in August, dropped about 20 lbs and started throwing up while eating. He scheduled an endoscopy and colonoscopy and in the office they told us he had a bleeding mass in his 3rd quadrant. That day we got a CAT scan which revealed a spot on his liver, thank god it turned out to be a hemangioma (blood vessels) - the PET scan revealed it had not metastasized to his organs, so we are in a window of cure as the doctor stated. We are working with a team of doctors at a Pennsylvania a Hospital in the thoracic surgery, division. All the doctors seem wonderful, and have great reviews and accolades. He had a feeding tube placed last week, which landed us in the hospital for four days as they want it to monitor his feeds, and he had his port placement this week. To say the least we have been so scared and a roller coaster of emotions. My husband still hasn’t cried in front of me. I’m 44 years old and I’m scared shitless and I consider myself a super strong. This is definitely the hardest thing I/ we ever had to face. My husband was still eating soft food like mashed potatoes, soups, yogurt, smoothies, and pudding but yesterday he started throwing up while eating a smoothie so it’s been hard to get to the a lot at 2200 cal that the dietitian wants him to eat. Were using the feeding tube at 100 mL per hour. He gets a lot of cramping in his stomach after the feeds and we tried feeding at night but he’s uncomfortable on an incline. I can’t sleep, which is always had sleeping issues more over. He usually sleeps on his stomach and now can’t do to the port in the feeding tube. Last night he tried to take an Tylenol and it got stuck in his throat and threw up. We start chemotherapy on Friday of this week, and I’m scared that due to all the complications with getting him allotted calories already that this is going to fail. The plan is that he will be doing chemotherapy for two months to shrink the tumor and hopefully attack the lymph nodes that are lighting up on his pet scan if all goes well, he would move to radiation for 6 to 8 weeks targeted on his third quadrant of his esophagus, if that goes well, he would move to surgery after four weeks of rest. They prefaced the post up with about 12 weeks of recovery and about 1 to 2 weeks in the hospital. They placed a feeding tube preemptively because he had lost so much weight and they wanted to keep his caloric intake up and didn’t want to have to operate during the treatment which would altar in delay possible outcomes. The doctors didn’t tell us the stage of the cancer but they said it was aggressive and therefore they’re attacking it with an aggressive treatment and someways. I’m glad we don’t know the staging. We are so numb and feel like our lives have been ripped out from under her feet. I can’t stop crying uncontrollably I took leave from work to care for Joe and to deal with my own emotions and Joe has not been working since he found out. On top of the health stress. We also now have financial stress and worry. I’m just wondering with all of this what to expect. Although we are so scared and so worried I’m grasping desperately to Hope.
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Hi Nathalie,
I'm a wife too and I know how are you feeling. Even thought you are much younger than me, we don't see yourself in this position. My husband didn't have the surgery option, because was much advanced.
My way of coping was researching, gaining knowledge to be able to discuss with doctors and getting 2nd, 3nd opinions to make sure the treatment and diagnoses was correct.
My husband started feeling much better after the 3rd round of chemo, yes, he feels bad for 3-4 days but after he feels normal. I push him to go for walks, run light errands ..mental health is 50% of the battle
If your husband feels good I would say to him to continue working (if is possible), because mentally might be therapeutic.
Learn as much about nutrition as you can, all the major hospitals has very good links with information. This forum i learned a lot by reading other experiences. There are a lot information specially on feeding tube.
Keep calm is a long journey.
Helaine
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7 ReactionsHey Nathalie. My husband turned 51 in July. He was diagnosed with Esophageal Cancer in April (5 days before our 26th wedding anniversary). His was very advanced as well, and surgery was not an option. At the time neither was radiation. But God… He started chemo and immunotherapy on May 9, and his scan in July looked amazing. Super improvement. So in September he started chemo/radiation and finished that at the end of October. Right now he is just doing immunotherapy, and I am asking that everyone please pray for AMaZING results on his upcoming scan on 12/21. It has certainly been a ride. Not one that I would recommend for ANYone! I would love to talk to you more if you would like. I’m not sure how to email on this platform though. I will say that I don’t know how ANYBODY gets through things like this without the Lord. It’s hard enough with him! Praying for your husband and your family! -Sabrina
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7 ReactionsThinking of you with prayers. I can relate, as a wife, to each one who posted on this thread. I have to go to work now, but will try to share later. I’m so sorry for what you are going through.
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1 ReactionHello,
We started my husband's journey a week after my younger sister died of breast cancer. It's been an emotional roller coaster ride. All of our retirement plans have changed. He has always been my rock and it breaks my heart to see him so anxious and depressed.
Lately we agree to have cancer free weekends which has helped. We are trying not to let it consume us but it IS consuming. He uses the LOSE IT app (not to lose weight but to maintain weight and avoid more weight loss). It allows him to track calories, water and protein. Someone suggested using Boost Plus, add ice cream and root beer- high calorie shakes which he enjoys. He is getting his Gtube and Port next week. I made him a daily log for tracking his temp, mouth care (after meals and bedtime), anti-nausea med times. Bought Tide Free & Gentle detergent to protect his skin while getting radiation treatments. We hope the chemo and radiation puts him in remission and he doesn't need surgery.
We pushed the Doctors to be upfront and not sugar coat his prognosis. The more we know the more informed we are to make life changing decisions. Wishing you the very best. Caring thoughts to all!
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3 Reactions@hope24 all
I was diagnosed with esophageal cancer last fall when I could not swallow food due to tumor in my lower esophagus. I got feeding tube and port and started radiation and chemo.
Today the esophageal cancer is gone along with the feeding tube. Success is possible and I hope your treatment goes well. I'd be happy to try and answer questions?
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7 ReactionsThank you for this. I am so glad for you as well. He started chemo yesterday and the feeding tube and port kicked his ass. He seems weak. What can I do as a caretaker to help him stay motivated? And what was your diet like? He is maintaining 2200 a day, but it has been a challenge now that he can’t take in much, so he is feeding about 8 hours a day, which is not at night as he has trouble sleeping upright and tethered to a line, so we keep him on during the day which limits his mobility. Did you exercise at all during treatments?
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2 ReactionsAs what type of esophogectomy did you receive? What was recovery like? Do you have any side effects? What is your day of eating and drinking like now? Do you feel you can live normally now?
@hope24
I could not swallow food for several months so I had Isosource via feeding tube 6 times per day which gave me about 2200 calories. And for a treat I could sip milk shakes.
When the tumor shrunk, it was great to be able to start swallowing soft food again. No I did not exercise during treatment but still lost about 15 pounds. Charlotte and I watched a lot of TV together such as the Major Crimes series. We also played computer games like Wordle. And I took a lot of naps.
Don
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3 ReactionsThis is wonderful and helpful. I wish you all the success in the future. Thanks so much for sharing. It does settle my nerves a bit.
Praying for your husband for complete healing. I also have ec it is a terrible journey to say the least. I’ve had rad/chemo immunotherapy. My most recent scan shows no change in liver tumor and increase in size Of lymph node. I am getting biopsy tues on node. I have my full bio on smart patients.com praying 🙏🙏
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3 Reactions