Father - New Floor of Mouth SCC diagnosis

lindsay0916,

Welcome to H&N 2018,where we have all been down this road.

Some of the things to do, remember, or look out for:

Drink lots of water and swallow often (stay hydrated).  Sound easy, but sometimes hard.

Consume 3K calories a day by any means necessary.  Sounds hard, is hard.  (Eat, PEG, drink)

Take nausea meds before feeling sick.

Have a nice recliner and blanket.

Have all the meds recommended to you.  Don’t get left out to dry on a weekend.

Get the infusion chair closest to the rest room.

Stay in the game; don’t let the situation get you down.

Have music for rads.

Food WILL not taste, Will taste terrible, Will not be your friend.  You just have to find a way and exploit it.  In general terms, there is NO food which can be prepared to taste good.  Food is huge issue, figure it out and you are half way there.

You are going to make it through and will be  enjoying the spring weather soon.

Matt

lindsay0916,

For me Aquaphor was the minor league ointment.  I used the good stuff, the strong stuff, the stuff H&N members go to for burn relief satisfaction, Silver Sulfadiazine Cream. Side note, Silver Sulfadiazine Cream is not for everyone, not everyone needs it and being satisfied with Aquaphor points to a limited not bad burn situation (good luck).

Caution, use Doctor Google at your own risk. If you are too happy and want to get depressed, log on to Doctor Goggle before  bedtime to make your dreams run wild.

 I went through 2 PEG’s (one good, one very bad), I used Jevity with the  PEG (hang it high on fast drip).

I also drank one meal a day and drank around 10 glasses  of water daily.

Having the bathroom close was the big tip for chemo, 6 hours is a long  time when you need  to pee (right now).  Stay hydrated during chemo or afterwards.  You want to  dilute that crap.

Get him a pillow and  blanket. Books and crosswords are a nice thought.

I encourage you to be happy and to treat yourself to some ice cream (this adventure will be rough).

Matt

Matt is speaking true words about the chair closest to the restroom.

lindsay0916 said:

It has been a tough start to treatment

Thanks so much for your comments it's a lot of great information. 

The plan for my dad is the 35 radiations and 3 doses of Cisplatin. So far he's had 2 radiations and had first dose of Cisplatin today.

He did get a feeding tube placed, mainly because he really hasn't been eating anything at all, even before the treatments started -- the primary tumor is under his tongue so really anything in his mouth is excruciating for him at this point. 

The tip about the humidifier is excellent he's been complaining about intense dry mouth already -- did you do a cool mist one?  Any suggestions on brands or anything that worked for you?

These first few days of treatment have been really tough for us. My dad feels as though the tumor in his neck is pushing against his wind pipe and it's making it hard for him to breathe -- he then gets severe anxiety about this which makes the problem even worse. He has this constant wheeze and has to calm himself down from multiple panic attacks. Even had to call 911 last night when he was convinced he couldn't breathe at all. The oncologist today said it's probably a combination of the tumor on the windpipe and anxiety, gave him some anti-anxiety meds. He's still struggling -- oncologist said it's best to proceed with treatments in the hopes that the tumor will start to shrink over the next week and give him some relief.  Did anyone else experience anything like this? It's really terrifying to watch and we are doing our best to calm him down and avoid hospitalization but it's been really difficult. I can't even imagine what he's going through.

Thank you so much for your support.

I bought a Honeywell cool mist humidifier ($30). I kept it on my night stand while I slept (facing me and me facing it). I also moved it to the living room during the day and it sat next to me so the air I breathed in was moist.

I too suffered from problems breathing. It felt like my throat had cotton in it and pressure pushing against it. I learned that sensation was fairly normal. I also learned I had to keep myself calm or it only got worse. That's when I sought out YouTube videos that taught me meditation/breathing techniques to relax me. I'd use those exercises to relax during the day and when I was taking in calories.

I refused to take pain or anti-anxiety meds (can't stand how they effect me). I instead crossed the boarder and bought THC edibles. For me, they simply relaxed me, lowered my anxiety and greatly helped me to sleep.

I also found that our small long haired chihuahua was great comfort. He'd sit on my lap or lay next to me in bed and that was relaxing.

Keep reminding him that what he is experiencing is not out of the norm. He simply needs to remind himself there is a finish line and every day and every calorie gets him closer to crossing it.

lorijeannj said:

My husband, 61 yrs and pretty

My husband, 61 yrs and pretty healthy had  5.1 cm tumor BOT

He too had anxiety when lying down with mask during radiation.  Thanks to the techs they cut a small hole around nose so mask would fit and he could do treatment.

He slept on recliner for 4 months because he was afraid of choking.

He had a PEG (gravity) as well because he couldn't eat or drink, tongue was that swollen.

However, it will get better.  Maybe several versus a couple  of weeks, but that tongue and tumor will shrink.

Keep giving jevity and flush, flush, flush with liquids.  

The chemo may give him bad hiccups, get anti nausea for that.  Chemo will knock your dad out for weekend until Monday or Tuesday.

Radiation will dry things up and he may have excess mucous.  I would place aloe on my husband's neck after every treatment.  For what's it worth he never burned.  He never had mouth sores.  He never really complained except about excess mucous.

Hang in there and come back here for whatever.

As a caregiver, I feel your pain.  

P.s.  remind your dad and yourself, it is 7 weeks of a lifetime to get better.  And it is very curable.

Hi, Lindsay I was dianose with the same kinda cancer and I have been given a clean bill of health, thru the grace of God. I take it your father has had his tube and port placment? remember to always flush your feeding tube with water after every meal, you will not gain much wieght eatting thru feeding tube, try a little eating thru mouth, like clam chower and soups and eggs, make sure you stay regular as far as your bowel movements go, (very importance). Trust me he will be very tried after treatments, walking is always good but he has to keep his energy up as much as he can, remember the side affect of the Meds can very from person to person and remember stay as postive and laugh as much as you can, just keep your mind set to positive and trust in your Doctors and let God do the rest. Good luck.

AB.