I would like to share this information with people who may have strictures post radiation.

Problem: John had serious scarring in his esophagus after radiation to the extent that he could not even swallow his own saliva.

Previous attempts at treatment:
- The gastroenterologist attempted to give him a gastroscopy but failed. We were told that there was nothing he could do.
- Two swallowing tests with a speech and language pathologist showed that nothing was going down the esophagus.
- The interventional radiologist tried to open up the esophagus using the balloon but failed because he could not even find a tiny opening to put a wire in.

New procedure: The interventional radiologist put in two magnets above and below the strictures and left the magnets to do their work. There was no cutting, no bleeding involved. After two weeks the magnets created a channel and John is now able to drink all liquids. This will be followed by gradual dilatation to further open up the esophagus so that he will be able to swallow soft food.

As far as the doctors know, John is the first person in the world to have this procedure. Their intention is to publish the findings and present this at conferences so that other patients can get similar help.

John has been on a PEG tube for two whole years and this procedure has improved his quality of life in a really major way. He found an interventional radiologist who was willing to think outside the box and to experiment because John asked around again and again. He just would not accept the fact that he could not swallow. So, his persistence has paid off.

That is great news! I hope this can help a lot more.

NEVER GIVE UP!!

Thanks! It is wonderful to get reports of very new treatments that work. Hope this gets into the mainstream standard of care options someday.

Thanks for sharing this with fellow OCF members! its always great hearing of such a huge turn around with a new procedure. Congrats to John!!!

Thanks Christine, Don and Uptown. I, too, hope that this will become the go-to treatment for people with strictures in their esophagus post radiation. I had actually taken as fact that John would never eat/drink again. Yesterday I was able to take out my smoothie recipes and had John pick out the ones he would like to try. What a wonderful moment that was! We are planning to give Christine's peanut butter smoothie a try at some point.

I also have to mention that John is still getting chemo. Because the procedure is not really invasive, the interventional radiologist was able to do it during the three weeks between chemo doses even when John's white blood count was low (1.3). Our MO is totally in support of the effort and was in contact with the IR about the arrangements. We are truly lucky to have these doctors.

What a beautiful story! In the midst of it all, glimmers of hope are sometimes the best medicine. I wish for you many more days and times like this. Never give up!

Gloria - What wonderful news about John and this new treatment! Stories like this is one of the main reasons I keep coming back to OCF because there is always something new and hopeful to learn about which can benefit so many!

Gloria - I was SO HAPPY to read your post about the novel approach and great success you and John have had with this procedure. How wonderful it must feel for John to swallow after so much time has passed!

While there is very little good that comes from having cancer, we all hope that in some small way we are making it easier for others who might travel this path we are on. John is certainly doing that - with his persistence, he is contributing in a BIG way!

My very best to both of you,
Nancy

Wow, that is great news!
Will they increase the size of the magnets so he may eventually be able to keep the esophagus open and eat some soft foods?
None of my dilations have helped for more than a few weeks.
This sounds promising!
Thank you for sharing !
Cindy

Hi Cindy, the magnets are used for opening up the blocked esophagus. Now that it is opened, John has to have gradual dilations to open it up further and to keep it open. Today the doctor told me that the only way to keep the esophagus open is to put in a temporary stent until everything around it heals. He hasn't done it so far because today John only had his first dilatation. The IR wants to see how much narrowing happens between now and the next dilation before he decides. His reason for the wait-and-see is that a stent in the esophagus opening may cause a choking sensation and he wants to avoid it if he can.

Anne Marie and Nancy14, it was so great to hear from you.

this is so fabulous for the both of you. Normalcy is very important to mind set. just goes to show you there is always someone out there to help. hugs...

Hi Gloria:

New here - although a sinus cancer survivor by 7 years - and saw a link to this post on another forum. I know several people that have gone thru the frustration of dilations that didn't last and I'm interested in this option. I don't completely understand how the magnets were used - is there any further documentation? What/where is hospital/practice this done at? Can you reveal the physician's name? Let me know when you get a chance - if this is a viable option I'd truly like to pass this on!

- Jeff

Jeff, I have sent you a private message. Please check the flashing envelope at the top.

You might have wondered what has happened to the magnets now that the esophagus is open. Well, things took a bit of an unexpected turn -- in a pleasant way. When the magnets were inserted they were attached to some string which was tied to his PEG outside his body. I suppose that would allow the doctor to have some control over the magnets. One day, two weeks after the magnets were put in, John discovered that the string was gone! An X-ray showed no sign of the magnets! John had actually passed the magnets out. So there was no need to bring him I n, put him under, just to get the magnets out. Talk about a minimally invasive procedure!

I'm glad to hear things worked their way out.

Good info....just found this message and have printed a copy for my radiologist. Sounds very promising!

Hi. I was in this forum from 2005-2008 but dropped out partly due to hubris wrongly thinking my peg tube days were over. Had near total glossectomy in Feb. 2004 w/36 rad treatments Mar-May 2004. Feeding tube inserted Feb 04 remaining until Oct 2007 when the site hemmorhaged and was removed. Fortunately, I had been thru swallow therapy and passed barium swallow test (MBS). So I went on a high calorie liquid diet (used flavorings for taste as it was still there). Was fine until 2013 when I started losing weight. Finally dx of aspiration pneumonia in Feb /2014. Tube inserted. Really took me down a notch. Had 3 EGDs in summer/fall 2014 w/GI doc who said there was an esophagus stricture - he opened to 11 CM and said I could have limited oral intake so I began having a half coffee cup of milkshake in the evening, continuing tube for basic nourishment. Last month (Sep 2015) after passing out, I was diagnosed once more w/pneumonia. I attributed this to the milkshakes I had each night and went off of them. I was not told this was the cause but what else could it be? My GI doc is going to do another EGD next month but I'm not touching anything oral without swallow therapy and more important, passing an MBS. Nearly 80 years old and nearly 12 years a survivor, taking no more chances. So very glad you are able to swallow and I am thankful for the nearly 7 years that I could. Love to know who you GI doc is because I don't think they have a clue here about such out of the box solutions. Stay well and enjoy!

Jim

Hi Jim, we are in Canada and the doctor is with the University Health Network. Opening up the esophagus however does not mean minimize the problem of aspiration. Since February, John has slowly developed silent aspiration and we have been struggling to deal with it.