Complete closure of esophagus

12 Posts | Page(s): 1 2  Next 

Complete closure of esophagus

by Chris3455 on Tue May 07, 2019 09:36 AM

Quote | Reply
Hi, My husband has had stage IV Esophageal Cancer for 3 years now. He’s been treated with a chemo & Keytruda trial, Folfox alone, and now for the past two years Keytruda alone. The Keytruda has been great for all the cancer in his liver but has not touch his lymph nodes or the original tumor which has now grown into his stomach. Now, skin has completely grown over his esophagus. Has anyone ever experienced this? And what did the doctors do ? He is supposed to start his very first round of radiation next week. Any advise would be great. Thank you, Marcia

RE: Complete closure of esophagus

by cagy2 on Thu May 09, 2019 02:47 PM

Quote | Reply

On May 07, 2019 9:36 AM Chris3455 wrote:

Hi, My husband has had stage IV Esophageal Cancer for 3 years now. He’s been treated with a chemo & Keytruda trial, Folfox alone, and now for the past two years Keytruda alone. The Keytruda has been great for all the cancer in his liver but has not touch his lymph nodes or the original tumor which has now grown into his stomach. Now, skin has completely grown over his esophagus. Has anyone ever experienced this? And what did the doctors do ? He is supposed to start his very first round of radiation next week. Any advise would be great. Thank you, Marcia

Marcia, I have had the same cancer stage 4 twice.  Once on tongue and once in espophagus.  My throat swelled shut for 6 weeks from the radiation and it took 3 dilations 2 weeks part to open it and since then It's been normal. That was over 3 years ago. I have had 14 dilation since 2018.   I doubt that the skin has grown shut, if so blame the Dr. for not keeping tabs on him.  I have had excellant Dr's but I have had family members die from listen to their Dr's too.  NEVER trust a Dr. with your life no matter how you feel.  Get a 2nd opinion for peace of mind. NOT having radiation first was a big mistake.  Chemo can be devastating and I would NEVER go thru that again because it destroys your kidneys.  Ask your DR.!  My creatine level is holding at 1.67 and will never get better.  Started out at 1.1  I have had cancer 5 times since 2010 and am 80 years old.  Message me back for any support you need,  John

RE: Complete closure of esophagus

by Sdurnell on Thu May 09, 2019 04:21 PM

Quote | Reply

Marcia,

He and his doctors should consider esophageal dilation.  It's a simple procedure usually done under sedation, but the first one or two can be pretty tricky with a complete closure like this.  

I had a complete stricture of my upper throat due to radiation for throat cancer and could swallow nothing for months.  My first couple of dilations were not successful, but the doctors took pictures, figured out what they were up against, and then were able to get my throat open a bit.  It took a number of dilations to get it open enough that I could drink and eat by mouth again, but it was worth it.

My best to you and your husband.

Susan

RE: Complete closure of esophagus

by Chris3455 on Thu May 09, 2019 04:52 PM

Quote | Reply

On May 09, 2019 2:47 PM cagy2 wrote:

On May 07, 2019 9:36 AM Chris3455 wrote:

Hi, My husband has had stage IV Esophageal Cancer for 3 years now. He’s been treated with a chemo & Keytruda trial, Folfox alone, and now for the past two years Keytruda alone. The Keytruda has been great for all the cancer in his liver but has not touch his lymph nodes or the original tumor which has now grown into his stomach. Now, skin has completely grown over his esophagus. Has anyone ever experienced this? And what did the doctors do ? He is supposed to start his very first round of radiation next week. Any advise would be great. Thank you, Marcia

Marcia, I have had the same cancer stage 4 twice.  Once on tongue and once in espophagus.  My throat swelled shut for 6 weeks from the radiation and it took 3 dilations 2 weeks part to open it and since then It's been normal. That was over 3 years ago. I have had 14 dilation since 2018.   I doubt that the skin has grown shut, if so blame the Dr. for not keeping tabs on him.  I have had excellant Dr's but I have had family members die from listen to their Dr's too.  NEVER trust a Dr. with your life no matter how you feel.  Get a 2nd opinion for peace of mind. NOT having radiation first was a big mistake.  Chemo can be devastating and I would NEVER go thru that again because it destroys your kidneys.  Ask your DR.!  My creatine level is holding at 1.67 and will never get better.  Started out at 1.1  I have had cancer 5 times since 2010 and am 80 years old.  Message me back for any support you need,  John

Hi John,

I am so sorry to hear you have had this terrible cancer and twice! Oh my gosh. Lord, I hope he wont have to keep getting dialations. Are you able to eat normal now?  He's had this feeding tube for about 2 years and that is almost worse than the medicines. We have been going to so many doctors and they do CT scans about every 3-6 months.  And we only get an endoscopy if we ask.  We have been very vigilant, but Chris is so frustrated and we didn't think we could have the radiation because it was so close to his stomach. We just found out recently (a little over a month ago) that he could have it! Been to Moffit in Florida, our cancer dr., our gastroenterologist, and the radiologist. Now, finally he is going to get the radiation. I'll keep you posted on how that goes.  We talk to the radiologist on 5.14.19.

Thank you so much for writing back to me and best wishes to you in your recovery. Marcia

RE: Complete closure of esophagus and (ketruda)

by Chris3455 on Thu May 09, 2019 05:01 PM

Quote | Reply

Hi Susan,

Thank you so much for replying I am so happy to hear your dilations worked.  Sucked it happened because of your radiation.  Our main goal is to get Chris to start eating again. He has not eaten a solid meal in almost 2 years. The feeding tube hurts as bad or more than the treatment he is getting. I am so hopeful that the radiation will shrink his tumor so he can eat. And will definitely ask him about dilation. His esophagus was almost completely closed before he started the immunotherapy so i am not going to say it was caused by that. Prayers to you and your good health. My best, Marcia  

RE: Complete closure of esophagus

by Chris3455 on Thu May 09, 2019 05:30 PM

Quote | Reply

Hi Susan, 

I hope you got my last message.  I don't think i sent it directly to you.  Just go to the feed and you will see my response.

Have a great day!

Marcia

RE: Complete closure of esophagus

by Chris3455 on Thu May 09, 2019 05:33 PM

Quote | Reply

Hi John,

I guess i didn't read the whole message!  You've had 14 dilations!?! Did they tell you why so many?  Does your esophagus just keep closing back up?  

I am going to ask our radiologist and see what he says.  I will pass that along to you.

Thank you, Marcia

RE: Complete closure of esophagus

by cagy2 on Thu May 09, 2019 06:33 PM

Quote | Reply

Yes, 14 dilations.  With throat cancer the radiation toughens up your muscles, simular to scarring.  Periodic dilations help the swallowing process. Some are 18 months apart, whenever I feel the need for one.  My throat is only dilated to a 15 because of radation and normal is about 18.  Upper and lower can be dilated.  No, it will not close up again. The location of my cancer was a contributing factor, being in the lower part of my throat just above my collar bone.  I couldn't even swallow saliva. Lord help you when you swallow a pill and it gets stuck which happened a few times to me.  You are gasping for breath and think you are dieing and goes on for a long time.  Tears start flowing and you panic which makes it worse.  Terrible experience!    John

RE: Complete closure of esophagus

by Chris3455 on Thu May 09, 2019 07:17 PM

Quote | Reply

Hi John,

Holy cow! I have a had a pill stuck sideways in my throat and that is awful.  I can't imagine it happening and feeling like you can't breathe. That sounds so scary! You have given me so much good information.  I am really happy to have met you. :)

Chris's tumor is in his lower esophagus and growing tube between his stomach and esophagus. I couldn't tell you how large it is., but until about two weeks ago he could feel a tiny bit of saliva or water get through. Ever since he got his feeding tube he's been carrying around one of those large cups from the hospital and spits saliva and water in there.  He does that with food and water...but has trained himself to not to swallow. 

I can't believe the Doctor's never suggested radiation till now.  We are pretty pissed off about that, since i keep reading most people have radiation and chemo right away. He might have been able to eat a long time ago!

Oh well, we are going to not dwell on it and just keep on going and stay positive about the hopes that this will work. I hope he reads our posts.  I hooked him up so we are both connected with the same login.  It's really nice to be able to talk to someone who has/is going through the same thing. 

RE: Complete closure of esophagus

by dsmasters on Fri May 17, 2019 10:53 PM

Quote | Reply
I had a persistent stricture after chemo, radiation, and am Ivor Lewis esophagetomy. It closed up for the first time about two months after the surgery and then he will close every three weeks thereafter. I had 10 dilations, six stents, and tens laser ablation‘s. After the last laser ablation I bled out the next day. I was then referred to a surgeon who did it and esophageal reconstruction called a Super Jujunum esophagetomy. That fix my problem for me. I now have only 10% of my stomach and my throat is connected directly to my small intestine so that no food travels through my stomach. It sounds weird and freaky but it works and I’ve been this way for nearly 10 years now. I would recommend surgery as it is the only thing that helped me.
12 Posts | Page(s): 1 2  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.