Hi,

I've just joined but have been reading the board for a while. My 61 y.o. father was diagnosed in early October with Stage IV SCC BOT, started 35x rad and 7x carboplatin (cisplatin judged too hard on his heart) early November. Found out late November that it is HPV+. He was set to finish treatment Tuesday (22 Dec), but was checked into the hospital Monday morning due to severe choking episodes to the point of passing out. He finished radiation Tuesday and is still in the hospital spitting every ten minutes. It is not getting better. The severe episodes (a couple a day) are very frightening especially because he is so weak (though very tough), and he really is afraid he will choke to death. He is spitting every 8-10 minutes 24/7.

It has been 5 days since he finished treatment and the docs are saying it will get worse for another week. He is getting very discouraged.

He is currently on:
-Guaifinesin
-Fentanyl patch (50)
-Fentanyl PCA (morphine didn't work)
-Antifungal for thrush (can't remember the name)
-Salagen (just added to increase saliva, some excess sweating)
-Glycopyrrolate (to dry mucus)
-Tylenol (to treat headache from thrush meds)
-Lidocaine/saline rinse (doesn't like b/c it numbs his mouth and then he chokes more)
-Senna and Miralax
-Zofran (for nausea)

-Just got a nebulizer
-Using PEG for Jevity 1.5 and meds
-IV for 4 liters fluids per day
-swishing saline on a regular basis

What we've tried:
-moisture mask
-suction tube (hurts too much)
-morphine PCA (too groggy, didn't cut pain)
-oxycodone
-dilotid
-magic mouthwash (benadryl in it made him too groggy)
-selexa (caused spasms)
-seltzer water / club soda (hurts too much)

What I've asked the docs to look into:
-Evoxac
-Salagen mouthwash

He is a trooper and is trying to push through. He has an extremely high pain tolerance and a keen understanding of the medications etc., as he is a surgeon. We had him propped up but his actually does better on his side. I would appreciate any suggestions or comments on the above combination of medicine, keeping in mind that his heart valve and clotting problems complicate things. Many thanks in advance.

The Guaifinesin should help. How long has he been on it? Excess sweating after taking Salagen is normal. How much is he taking at what strength how often? He should have been put on this drug before he started radiation but it also should help.

Is he using the Yankeur attachment on the suction machine? You are not supposed to touch any tissues in the mouth when suctioning. Just suction the mucous out.

He might want to try baking soda rather than salt for a rinse. Also I didn't use seltzer but you can find posts on it. I know I had to let all soda go flat before I could drink it so you might try letting the seltzer go flat before rinsing with it. Hopefully the guy who used the slezer will sign in soon.

Tell him to hang in there. Its awful but will go away eventually. Make certain the drs and nurses are keeping up with it. He has to keep is nutrition and water down. Hope he feels better soon.

Take care,
Eileen

I wish I had some information for you. I do know about the choking as my throat sweeled to the point that I was choking a lot. They made me take a break from treatment as mine happened after only 3 weeks. I start back up tomorrow. I will be watching to see all the suggestions you get as I may be dealing with is near the end of my treatment as well.

Many thanks for the input and support.

My father has been on the guifinesin for about 10 days.

He's only been on the Salagen a couple days, twice a day; they aren't having him do it at night because increasing the saliva will increase general secretions and the need to spit. I'm not sure of the dose but will check today (my family is rotating 8 hour shifts at the hospital).

Last night he really thought he would choke to death and they called in the respiratory folks. Some of the docs suggested using the suction if he really is going to choke to death, but the concern there is that on radiated tissue it could cause bleeding, and once he starts to bleed it cannot be stopped (it was a miracle he made it through heart surgery and that was with platelets and hormones).

The respiratory doc added in a MucoMyst nebulizer tonight so we'll see tomorrow morning how that is working. It causes further difficulty in breathing in a small number of patients but no phone calls yet so I'm guessing it at least hasn't done that.

Good luck starting back up, Angelia. Hopefully they can tweak something to help you get through the rest.

Ellen,

The thick mucous is very common at this stage and it can build up very quickly if that's what is causing his choking. I carried a small Styrofoam cup with me and constantly spit out that stuff. Trying to sleep was another matter. The bad news is that the few weeks post Tx are usually the worse time for everyone but the good news is he's almost to the end of this dark tunnel as I call it. I walked out in my 3rd week post Tx so tell him to hang in there just a little while longer and one day he will wake up and just know it's over!!

Getting the proper amount of hydration and calories is just as crucial now as it was during Tx. I suggest at least 3000 cals and 48ozs of water each and every day from now until at least 1 year post Tx.

I was also HPV+ and have become somewhat of a HPV+ OC spokesperson so anytime he or you want to talk just PM me and I'll give you my phone #'s.