1. < Esophageal Cancer

About to start chemo

Posted by bob2158 @bob2158, Jun 14 9:24pm

I have stg 3-4 EC with complete blockage. Unable to swallow. Have a g tube for feeding. About to start chemo but having ongoing aspiration pneumonia bc of accumulated esophageal content backing up into my throat during sleep causing choking & aspiration. Head elevation seems to make no difference. ANY INSIGHT?

Also, I’ll be facing 16 wk chemo. Very apprehensive, since I’ve heard how traumatizing it can be
Any words of encouragement?

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

mrgvw | @mrgvw | Jun 15 6:34am

Obviously you must do your treatments... and see what happens. Because we know what happens should we do nothing. Esophageal Cancer is a crazy tough opponent... so come talk to us on our Sunday morning EC Zoom call, 9am Eastern (6am for me in California)... this is in about 90 minutes!

Here's the one-touch Zoom link:
https://us06web.zoom.us/j/4550284795?pwd=UjBHQ0J2V1pOc21SOExTR2N1UXNpQT09
Our calls are full of patients and caregivers who've done just about every chemo, radiation, and immunotherapy treatments known to man. Many of us have had esophagectomies as well.

Gary,
Southern California

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Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Jun 15 7:04am

Bob
I've been where you are and the really good news is that after chemo and radiation, the tumor in my esophagus was gone. But it took a while for all the side effects like coughing, spitting up mucus, and being very tired to go away.
I was on feeding tube with ISOSOURCE canisters for several months. There were some good signs early on such as the tumor shrinking 30%. My wife Charlotte was an amazing care giver. I hope you have someone to help you through this ordeal? We wish you well, and will be happy to try and answer any questions you have.
Don

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goldenshadow | @goldenshadow | Jun 15 2:46pm

Hi, Scott here I had 8 chemotherapy treatments no radiation treatments with surgery in between my treatments. So 4 treatments then surgery then 4 more treatments. So first couple of treatments not to bad a little nausea but not bad. 3rd and 4th treatment more fatigue and nausea. Had a j tube because I couldn’t eat anything my esophagus was mostly blocked could drink a little not much. Had the j tube for 7 months. Finally could eat 9 days after surgery soft foods and liquid foods like soups and mashed potato’s puddings food like that. So it could be different for you. We’re all different affects us all differently. Hope this helps. You got this!!

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jmaaccg | @jmaaccg | Jun 16 3:59pm

Bob, Praying for you and your family during this journey.

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momshmallow | @momshmallow | Jun 16 8:54pm

My husband is waiting get his PET scan and hopefully start treatments afterwards.
I have to say this is an AMAZING group of people on here. The support is outstanding.
Stay in touch with us. I believe it will work!

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goldenshadow | @goldenshadow | 6 days ago

Yes let us know how you are doing. Best Wishes!!

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klondikedarol | @klondikedarol | 5 days ago

Good Morning
I had a complete blockage back in January of 2023. Initially they inserted a feeding tube through my nose for immediate relief. ( I had not eaten or drank anything in more than 5 days ). I began a regimen of Chemo and Radiation, along with Hydrogen inhalation immediately. They ruled out surgery due to my age (85 at the time) and other physical issues. After my 3rd Chemo treatment they were discontinued due to the severe drop in my platelet blood count. I continued 5 day a week radiation for 6 weeks, along with 3-4 hours per day of Hydrogen inhalation. I lost 76 lbs before I was able to consume food and drink by mouth again. They wanted to replace my nasal feeding tube with a "J" tube, but I refused. I was determined that either the tumor would go away, or I would. Well to make a long story short, I personally pulled the 5+ foot feeding tube out of my nose in late August of 2023, after I was able to drink liquids and eat soft foods. By late september I was able to eat almost anything, and my next CT & PET showed the tumor 90% gone. I have continued the 1-1/2 hours per day of Hydrogen inhalation, and my tumor is 100% gone as of December of 2023. I have regular CT scans done (every 4 months) at Mayo Clinic, and so far there has been NO recurrence.

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2 replies
cromme50 | @cromme50 | 4 days ago
In reply to @klondikedarol "Good Morning I had a complete blockage back in January of 2023. Initially they inserted a..." + (show)
@klondikedarol

Good Morning
I had a complete blockage back in January of 2023. Initially they inserted a feeding tube through my nose for immediate relief. ( I had not eaten or drank anything in more than 5 days ). I began a regimen of Chemo and Radiation, along with Hydrogen inhalation immediately. They ruled out surgery due to my age (85 at the time) and other physical issues. After my 3rd Chemo treatment they were discontinued due to the severe drop in my platelet blood count. I continued 5 day a week radiation for 6 weeks, along with 3-4 hours per day of Hydrogen inhalation. I lost 76 lbs before I was able to consume food and drink by mouth again. They wanted to replace my nasal feeding tube with a "J" tube, but I refused. I was determined that either the tumor would go away, or I would. Well to make a long story short, I personally pulled the 5+ foot feeding tube out of my nose in late August of 2023, after I was able to drink liquids and eat soft foods. By late september I was able to eat almost anything, and my next CT & PET showed the tumor 90% gone. I have continued the 1-1/2 hours per day of Hydrogen inhalation, and my tumor is 100% gone as of December of 2023. I have regular CT scans done (every 4 months) at Mayo Clinic, and so far there has been NO recurrence.

Jump to this post

How do you get the hydrogen inhalation? at a clinic, at home? who prescribes it for you? PCP or Mayo? I am really intrigued about this approach, there is limited info about it online but quite positive for cancer. I would love to hear more from you about it, thank you for mentioning it!

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momshmallow | @momshmallow | 4 days ago
In reply to @klondikedarol "Good Morning I had a complete blockage back in January of 2023. Initially they inserted a..." + (show)
@klondikedarol

Good Morning
I had a complete blockage back in January of 2023. Initially they inserted a feeding tube through my nose for immediate relief. ( I had not eaten or drank anything in more than 5 days ). I began a regimen of Chemo and Radiation, along with Hydrogen inhalation immediately. They ruled out surgery due to my age (85 at the time) and other physical issues. After my 3rd Chemo treatment they were discontinued due to the severe drop in my platelet blood count. I continued 5 day a week radiation for 6 weeks, along with 3-4 hours per day of Hydrogen inhalation. I lost 76 lbs before I was able to consume food and drink by mouth again. They wanted to replace my nasal feeding tube with a "J" tube, but I refused. I was determined that either the tumor would go away, or I would. Well to make a long story short, I personally pulled the 5+ foot feeding tube out of my nose in late August of 2023, after I was able to drink liquids and eat soft foods. By late september I was able to eat almost anything, and my next CT & PET showed the tumor 90% gone. I have continued the 1-1/2 hours per day of Hydrogen inhalation, and my tumor is 100% gone as of December of 2023. I have regular CT scans done (every 4 months) at Mayo Clinic, and so far there has been NO recurrence.

Jump to this post

Wow!! I am impressed! I too would like to know about the hydrogen treatment.
My husband will be starting chemo next week.
Thank you so much for posting your journey ❤

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