Father - New Floor of Mouth SCC diagnosis

lindsay0916

Hello everyone, I'm new here.  My father was just diagnosed last week with a Stage 4 floor of mouth squamous cell carcinoma that has spread to lymph nodes (6.1cm tumor).  We have been going through a whirlwind of appointments over the past week.  The good news is that the cancer has not spread anywhere else in the body, the bad news is that surgery is not an option due to the size/location of the tumor. At this point we are moving forward with the radiation and chemo treatment plan. It sounds like my dad will have 7 weeks/35 treatments of radiation and 3 doses of chemotherapy. We are basically waiting for the dentist to sign off (appointment this afternoon) so we can get everything going hopefully next week. We will also be getting a feeding tube placed either end of this week or early next.

I'm hoping for any and all advice on what to expect/what I can do to help my dad through this process. They gave us a ton of information on side effects of chemo and radiation, but I'd love to get the "real life" perspective from those who have gone through it. Or anything you think is important for a caregiver to know about. It sounds like most of the side effects will be from radiation...it also sounds like the chemo treatments will be intense (they said it will take like 6 hours for the infusion).  Any specific products I should get/tips to get through radiation and/or chemo? Good foods for the tube or tips on that?  It's all very overwhelming.

I am open ears to do whatever I can to make this easier for my dad -- thank you in advance for your help!

CivilMatt

welcome - some things to chew on

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

caregiver wife

Welcome

Lindsay,  Ditto everything Matt said!  We spent hundreds of dollars on burn medicine, free samples of Aquafor from rad nurses worked best.  Don't get stuck googling, lots of bad advice.  Every case is different, listen to YOUR doctors for advice.  Treatment is tough, but doable and very effective.

Crystal

lindsay0916

Hi Matt --

Hi Matt --

Thanks so much for the reply, that's a lot of great information. 

We just had a meeting with the nutritionist today to talk about getting enough calories and protein, so hopefully we are set up for success there, they mentioned a ton of products and gave us lists, are there any foods/supplements you recommend?  G-tube is being placed next Tuesday.

Any other tips on how to get through a chemo session?  They said it will take 6 hours which seems like an eternity. I'm planning to get my dad some books, crosswoods, etc. 

Thanks again for the encouragement, it really helps.

lindsay0916

caregiver wife said:

Welcome

Lindsay,  Ditto everything Matt said!  We spent hundreds of dollars on burn medicine, free samples of Aquafor from rad nurses worked best.  Don't get stuck googling, lots of bad advice.  Every case is different, listen to YOUR doctors for advice.  Treatment is tough, but doable and very effective.

Crystal

Hi Crystal -

Hi Crystal -

Thanks for the advice! We did get some Aquaphor samples and I already use Aquaphor personally for dry skin so we'll definitely have that at the ready! 

I have definitely fallen down some rabbit holes googling things so I've tried not to do it too much. 

We are ready to get this treatment going! Bring on the fight!

CivilMatt

while I am here

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

swopoe

Aquaphor is a godsend! On

Aquaphor is a godsend! On chemo days for my husband, we brought the iPad and watched a lot of Netflix. We finished seasons of Sherlock and the first season of Jessica Jones. It was nice to have that time together. Best of luck to you and your dad!

Sprint Car Dude

Ha.

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

lindsay0916

CivilMatt said:

while I am here

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, 

Matt, 

Thanks again for the tips. 

It sounds like hydration is key -- I plan to really get on my dad about that since he isn't necessarily a big water drinker.

Sorry for my lack of knowledge about chemo -- but are you mobile at all during the treatment, or just sitting in a chair? Did you find that you wanted to sleep most of the time? I guess I'm wondering if my presence there would be helpful or not for my dad.  I will definitely get him a pillow and blanket.

lindsay0916

swopoe said:

Aquaphor is a godsend! On

Aquaphor is a godsend! On chemo days for my husband, we brought the iPad and watched a lot of Netflix. We finished seasons of Sherlock and the first season of Jessica Jones. It was nice to have that time together. Best of luck to you and your dad!

Thanks for the advice I will

Thanks for the advice I will definitely get lots of Aquaphor! And the iPad is a great suggestion. I will get that charged up and ready to go - hopefully the office has WiFi! 

tommyodavey

lindsay0916 said:

Thanks for the advice I will

Thanks for the advice I will definitely get lots of Aquaphor! And the iPad is a great suggestion. I will get that charged up and ready to go - hopefully the office has WiFi! 

Not Much Else

Lindsay, everyone has said some great stuff.  All I wanted to add was to suggest not to Google anything related to the SCC.  All the information you will ever need is right here with these fine people.  Research the archives and any questions will be answered.  Google is a scary place and does nothing for the positive mood needed to get through this. Plus, a lot of misinformation is there too.

lindsay0916

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.

OKCnative

Sorry to hear this news about

Sorry to hear this news about your dad. Personally, i wouldn't get too concerned about their inability to perform surgery at this point.

The center I went to said they rarely every perform surgery prior to treatment. They let the treatment do it's thing and then re-evaluate the need for surgery.

In my case, SCC, BOT, HPV+ Stage 3 - everything returned to normal with treatment only and no surgery. I had the 35 radiations and 3 doses of Cisplatin chemo.

In virtually all cases, the treatment is bad and very hard on the body and mind. How bad depends on the individual; their age, health, mind set, support system, etc. Regardless, it's going to be rough on your dad and his caregivers.

Everything Matt said is true. 

For me, water and calories were the biggest game changers. He'll eventually find no enjoyment in either - but must continue to consume both in high quantities if he wants to get through this.

One other thing I would add; I bought a small room humidifier and put it on my night stand and sleep with my head titled toward it. It really (to this day) helps me sleep by keeping my mouth from drying out.

As symptoms pop up, be sure and ask here. Most of the tricks I learned that worked I discovered here and not from my doctor. Things like Boost VHC (530 calories in only 8oz), Benecalorie, disposable oral care sponges, asking for liquid Hydrocodone for severe coughing fits, the humidifier, exercising everyday, etc.   It was even from a member of this forum that I decided I would not do a PEG tube (and I'm very glad I did).

Good luck and keep reminding him that literally hundreds of thousands of people have successfully navigated this path before him.

OKCnative

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

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

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.

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.  

lorijeannj

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

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

lindsay0916

great ideas

Thanks again for the suggestions. He is taking anti-anxiety meds and he doesn't really like how he feels at all, but keeps saying he'd rather "feel loopy" than have panic attacks. I'm hoping that as the tumor shrinks he'll start to have some peace of mind with the visual of a smaller tumor and be able to get off the anxiety meds. We're going to talk to his oncologist about this as well. Maybe one of the only good things so far is that he doesn't seem to have any side effects from the chemo last Thursday...or maybe they are just masked by the anxiety meds? Hard to say.

Nutritionist has him on Isosource (sp?) and wants him to get 100% of his nutrition from those (doing 1.5 bottles 4 times a day). So far those are going well.

One day at a time.

lindsay0916

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.  

My dad has quite a bit of

My dad has quite a bit of anxiety about radiation as well. They've cut holes around his eyes and nose which helps a little, but when he lays back the sensation of not being able to breathe combined with a super dry mouth really freaks him out. He's been bringing his water and Biotene spray with and doing that right before he goes to lay down which helps but not for long.

Luckily he's been doing really well with the gravity feedings so far, hopefully it stays that way. 

He has already complained about having thick mucous -- he's been using Biotene and doing baking soda/salt water rinses but doesn't really feel like those are helping too much -- did your husband have any solutions for the mucous?

31 radiations and 2 chemos to go.

CivilMatt

lindsay0916 said:

great ideas

Thanks again for the suggestions. He is taking anti-anxiety meds and he doesn't really like how he feels at all, but keeps saying he'd rather "feel loopy" than have panic attacks. I'm hoping that as the tumor shrinks he'll start to have some peace of mind with the visual of a smaller tumor and be able to get off the anxiety meds. We're going to talk to his oncologist about this as well. Maybe one of the only good things so far is that he doesn't seem to have any side effects from the chemo last Thursday...or maybe they are just masked by the anxiety meds? Hard to say.

Nutritionist has him on Isosource (sp?) and wants him to get 100% of his nutrition from those (doing 1.5 bottles 4 times a day). So far those are going well.

One day at a time.

what to think about today?

lindsay0916,

I never liked the mask, but came to find it interesting.  I also took 1 Lorazepam   tablet before the zap to calm my very reasonable anxiety; you see I am a reasonable person. 

I did not think I was feeling or acting loopy, but I was.  What the heck, it is cancer treatment, nothing says you must be miserable.

Be ready for yet unfelt side effects, (they are lurking in the shadows).

Matt

sreyba3

Hi, Lindsay I was dianose

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.  

lindsay0916

sreyba3 said:

Hi, Lindsay I was dianose

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.  

Thanks AB, 

Thanks AB, 

Congratulations on the clean bill of health -- that is such wonderful news! 

My dad has a tube but not a port -- I assume no port because it's only 3 chemo sessions?  It hasn't been brought up though so I'm not certain.

So far he has been doing good with flushing his tube - he is trying to also eat by mouth as much as possible but it is tough to get much of anything down.

Thank you for the the kind words and advice.