My bf started to hiccup in 2009. As the years have pasted they have gotten worse. Now they can last up to 13 hours a day. He has had a fundoplication, followed by 2 additional tightening. He use to foam at the mouth. He was diagnosis with Barrett’s. But kept it under control. We have been everywhere Mayo, went to OR, Banner. I know Mayo has given him shots of Botox, numerous things. Nothing worked. He goes to nee with the hiccups every single day. Once in a great while he gets a day off.
He has been taking XYrems so he has have a good nights sleep. This is what I’ve been told. People with intractable hiccups, there is no cure. Most people die of a heart attack or commit suicide. If he drinks to much or to little, he’s to much or no at all he gets the hiccups.
He came down with cancer last March. Head and neck squamous cell carcinoma, hpv 16. Mothership was back of his throat on his tongue and went to left side of his neck.
He took cisplatin and proton radiation for 6 weeks. Was told 98%cure rate. 3 months later had pet scan, should up in a lymph node at end of his windpipe. Inoperable. He started Keytruda last September. He was told he can only have Keytruda for 2 yrs.
So what then? Is he cured? Is that all they can do? They don’t tell him a thing. He has all the worst side effects and top it off with intractable hiccups.
When they say you’ll be around for 2 more years. What does that mean? He thought it meant he’d be cured. To me it’s saying he’s on a timeline.
That frustrates me, cause he can make better decisions with if quality of life he has left. He has no balance, chemo brain, drops things, shortness of breath, diarrhea going on 4 months, the list is long er than that. The anxiety is terrible for him.
He just had another pet scan an there was a little flicker on hos neck but not attached to a lymph node. So they will be checking him again.
To me tell it like it is, as I would want to know. You could be traveling or seeing family more often, you’d take that time to get your ducks in order. And if a different out comes along praise the lord. But to say we don’t know everyone is different. Well we know studies are done, they know. I guess I’m frustrated for him.