Update after seeing RO:

Today starts the eighth week post treatment. Yesterday we saw John's RO yesterday and having had a look down John's throat, the doctor told us that it was still quite swollen. This, of course, means the esophagus is made narrower; hence, John's difficulty in swallowing even more than one teaspoon of water at a time.

We discussed the need of a swallowing assessment and the doctor felt that at this point, an assessment would only show that John can't swallow because the swelling hasn't yet subsided. The RO's suggestion is to wait until the next visit, in six weeks. He believes that as the swelling goes down, the swallowing will get easier unless scarring occurs, in which case, he will make whatever decision he will have to make at our next visit.

The doctor recommended continuing to practice swallow but not to overdo it as there is the possibility of the "silent aspirant" -- which is, due to the rawness in the throat post treatment, the patient may have temporarily lost the ability to tell if whatever he is swallowing is going down the wrong way, and that can be very dangerous.

I thought I would share this as I am sure many people, like us, are unsure about when we should become concerned about the swallowing and how far to push the swallowing practice.



Gloria
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.