Have you been given a barium swallowing test? Has the doctor explained why he thinks you will have to be on a peg permanently? My husband was unable to swallow after radiation because the scarring had closed his esophagus. It was quite the shock for us. The radiation oncologist said he could not do anything for John. The same happened with a GI specialist that he saw. Eventually, John found an interventional radiologist who tried a new procedure with him and managed to open up his esophagus. This was followed by five sessions of dilatation. John was able to eat very soft food, like poached eggs. He was also able to drink. However, red wine no longer tasted the same. John was able to do this because he kept up with his swallowing exercises all through the months when he could not swallow. Unfortunately, the swallowing muscles failed and John developed silent aspiration which put him in hospital with pneumonia.
As far as I am aware, there has not been another patient who has undergone the same procedure of opening up the esophagus. I am in Canada, maybe you can ask your doctor to consult with John’s doctor. If that’s the way you want to go, please send me a pm and I will give you then doctor’s name and hospital. The interventional radiologist was going to publish a paper on this, and I gave him permission to discuss John’s case. But I don’t know if they have actually done it.
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.