Noob with floor of mouth cancer

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  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited June 2021 #162
    Congrats On

    Still eating. Just keep the calories going in-Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    #163
    Hadn't seen you in a couple

    Hadn't seen you in a couple days 

    Glad you're okay!

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #164
    Homemade cream of potato soup

    Homemade cream of potato soup for lunch.  Not much flavor but wasn't too salty.  I had to get creative today because even the smoothies taste like a salt lick.  Gross.  

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #165
    One thing to try

    One thing you might try is switch to using Plastic spoons and forks to eat with.  It can cut down on the metallic taste, from using metal flatware  ( utensils).

    I remember one of my first efforts  was Nose Bleeds and that was 1 1/2 weeks into treatment. They were concerned, saying it was early for me to be having them.

    I stayed 67-70 pounds throughout treatment .  My techs at the Linear Accelerator machine were worried about me the whole time.   ( with good reason, as i was admitted to the hospital twice) I most always fell asleep during my treatments, so tired I was...

     

    LitlCJdoll

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #166
    OMG I dozed off on Friday.

    OMG I dozed off on Friday.

    I'm not having a metal taste I have a continuously salty taste.  I had to ditch the smoothies today and get creative.

    Over easy eggs, malt o meal, cream of potato soup, yogurt...  Not much flavor but if it's not salty I'll take it.

    For some reason I'm ravenous today and want to eat and eat.

    I want a burger and fries of all things but probably wouldn' t be able to eat it.

    I'm thinking of buying a few soft rubber spoons like babies use.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited June 2021 #167
    ozymandible said:

    OMG I dozed off on Friday.

    OMG I dozed off on Friday.

    I'm not having a metal taste I have a continuously salty taste.  I had to ditch the smoothies today and get creative.

    Over easy eggs, malt o meal, cream of potato soup, yogurt...  Not much flavor but if it's not salty I'll take it.

    For some reason I'm ravenous today and want to eat and eat.

    I want a burger and fries of all things but probably wouldn' t be able to eat it.

    I'm thinking of buying a few soft rubber spoons like babies use.

    Wow, your eating before s

    Wow, your eating sounds great! Try to keep it up.

    They told me the nose bleeds were from swelling in my head.  They were shocked I had them so early in my treatment course.

    It was my Ex boyfriend who told me about using Plastic spoons. By the way, he went through his Base of Tongue HNSCC,  Completely Alone. Cisplatin , then switched to Carboplatin....and Erbitux ,....and 37 radiation treatments. No caregiver, no family.  Neighbors drove him, when he could not drive. He would pass out ---- 6'2" tall, like a tree falling and whatever he was holding , a Gallon of milk, chocolate pudding, etc, would just go everywhere.... No one there to help him.

    HEY, by the way, dont forget to KEEP your radiation mask . Bring it home with you at the end of treatments and Decorate it !!! Look up online for ideas.

    You won't believe the totally cool ways people have turned their Masks into Art !! Its really wild to see, and inspiring.

    My mask came all the way down to my G tube.  Yes, that far down!! 

    I di d have them cut out the eyes, for me because otherwise it was so tight it closed my eyes. It shoved my chin upward...

    My long hair ended up getting bolted down. If I bunched it up behind my head, the mask wouldn't fit!  So, I usually had to spread it out. And yes, I lost the back layer from ear to ear in a sharply precise line. However, my hair was so long from the Top that it covered the loss underneath.. Now its grown back several inches...

     

    Oh yes, I did nap once they bolted me down. I just settled in underneath and after a while I felt Cared For. Because I felt like the machine was doing its job, so just relax and be glad its killing those rogue cells.  

    They had to awaken me, at times!

    Only thing is, a fast growing New Primary appeared only 4 months later. Yeah, really bad. It first biopsied Atypical... Then after biopsy it quadrupled in growth, and invaded my tongue flap and went deep in my floor of mouth. Keratinized tumor, invasive SqCC with deep positive margins.

    After 2 more surgeries for it, " very extensive surgery" as my surgeon told me, --- I begged for targeted radiation to the area but my R O refused, citing the dangers..

     

    Time for me to clam up and get to bed...!

    LitlCJdoll

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #168
    I don't think I want to keep

    I don't think I want to keep my mask.  I will be very happy to catapult the thing as far as I can fling it, ring a bell and go the ykw home.  To each their own.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #169
    Weekend Update:

    Weekend Update:

    Another glorious weekend of just staying home!

    Ate pretty good yesterday and today but having difficulty with water because everything tastes salty.  Somebody somewhere on this site mentioned coconut water whoever you are God bless you.  That is the only thing that doesn't taste salty.  I'm going to buy a case or two tomorrow.  If that gets salty too the seeing eye kid will drink it. She loves that stuff.  I used to work with a filipina who told me that stuff was the absolute best for electrolyte replacement after illness.  She could have been biased because her family back in the Phillippines had a coconut farm.  :) 

    I guess if coconut water doesn't work I will develop a serious tubal hydration schedule.  :(

    Glutamine really helped my mouth but I have a fast heartbeat don't know if dehydrated, too much glutamine or both.

    Until next time

    Ozy

  • ozymandible
    ozymandible Member Posts: 324 Member
    #170
    PS

    PS

     

    Was going through the closets and found four cases of tube feed.

     

    I didn't know I had that much left.

  • ProustLover
    ProustLover Member Posts: 121 Member
    edited June 2021 #171
    ozymandible said:

    PS

    PS

     

    Was going through the closets and found four cases of tube feed.

     

    I didn't know I had that much left.

    Four cases - fantastic!

    You can take a break from hassling with insurance about the supplies.  Nobody on treatment should have to use up time and energy making those frustrating calls. In our situation, my husband needed his feeding tube for only a while, but the company kept billing us automatically even after they stopped sending supplies.  I made the calls since he had little energy, motivation, or voice.  Glad you found that ace in the hole!  

  • ozymandible
    ozymandible Member Posts: 324 Member
    #172
    ProustLover said:

    Four cases - fantastic!

    You can take a break from hassling with insurance about the supplies.  Nobody on treatment should have to use up time and energy making those frustrating calls. In our situation, my husband needed his feeding tube for only a while, but the company kept billing us automatically even after they stopped sending supplies.  I made the calls since he had little energy, motivation, or voice.  Glad you found that ace in the hole!  

    Me too.  Feels good!  :) 

    Me too.  Feels good!  :) 

  • ozymandible
    ozymandible Member Posts: 324 Member
    #173
    Oh thank God for viscous

    Oh thank God for viscous lidocaine, manuka honey, glutamine powder and coconut water.  I am 20/33 rads, 4/8 chemos.  Felt really awful weekend before last when I spent the night in the hospital for my PEG installation.  Didn't think I'd be eating again for a while.

    The PEG tube doesn't hurt anymore.  I have reduced pain meds drastically as a result.  I take gabapentin and norco at bedtime only.  Gabapentin helps with nerve pain and anxiety, norco dries me up just enough and kills any other nagging stuff that might make it hard to sleep.  We all need our sleep most healing is done as we sleep.  In the morning, since I don't drink coffee right now, I take one exedrin for the caffeine only.  I don't want anymore caffeine headaches.  Headaches have diminished since dumping zofran(antinausea)in favor of compazine and taking exedrin instead of nothing to replace coffee.  Dumping zofran helped with constipation as well.  Back to at least several times a week instead of one forced bundle of rocks.

    The glutamine is helping sooo much.  My mouth has healed enough to eat over easy eggs and soup and since I started coconut water, the salty taste is less. Real food of some sort has to be better than formula. I am also really trying to be mindful of hydration to kill the saltiness too.  If I can't stand to drink, I am putting water into my PEG tube.  I'm also doing breakfast in my PEG I don't wanna mess with breakfast.  Packing an ensure everytime I leave the house along with my usual assortmemt of honey, creams and two kinds of water.  Might add coco water to the bag but it's heavy already.

    I started three kinds of soup.  My daughter is finishing them because I ran out of steam.  Going to rest a while, maybe work on a crossword or two.

    Radiation tech says I'm doing better than most.  I owe that to all of the posters on this forum.  I mean, the people where I'm.going are taking care of me just fine but they aren't going to tell me about coconut water and glutamine and manuka honey and all that.

    Hopefully the positive trend will continue or at least be strong enough to counter the last bit.  Things could change in a hurry.

    The PICC line is still problematic.  The chemo nurses are doing their level best to keep up with it.  They ordered more glue which hasn't come in yet.  Apparently it's super new and just now got approved by the FDA or some such.  I laid off the lymphatic massage and actually made my bandage last the entire week like it's supposed to but pooled up lymph under my jaw was starting to really bug me so resumed massages again.  I noticed it will weep lymph even from exercises but I can't be slacking on those.  They said every time I get rads it stirs up the lymph.  Probably dead cancer cells and lymph making that tennis ball feeling under my jaw.  Yuck.

    Okay, over and out.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #174
    My daughter and I  went

    My daughter and I  went grocery shopping today.  Didn't buy too much-some chicken thighs, dairy stuff, veggies for making soup and broth and juice.

    Since I'm back on real food again my energy level compared to last time we went shopping is much improved.  I can't really taste much but what I can taste is at least reasonable and not too salty.

    Am going to drink soup with my eggs, drink juice, coco water or doctored up buttermilk or something anything with flavor and calories.  I believe wholesome food will really make a difference.

    The three soups we made are sweet potato coconut curry(superblended went through tube too spicy!), cream of potato and broccoli cheese super blended with heavy cream & butter.

    Ten more days after Friday.  If I can stick to my schedule I get to drop one chemo.  Planning to leave PICC and PEG in place at least until I am healed and well into solid food.

    Radiation must be really advanced now and really hitting the target zone.  I was expecting to feel much worse by now.

    Hopefully I won't be too bad off at the end.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    edited July 2021 #175
    ozymandible said:

    My daughter and I  went

    My daughter and I  went grocery shopping today.  Didn't buy too much-some chicken thighs, dairy stuff, veggies for making soup and broth and juice.

    Since I'm back on real food again my energy level compared to last time we went shopping is much improved.  I can't really taste much but what I can taste is at least reasonable and not too salty.

    Am going to drink soup with my eggs, drink juice, coco water or doctored up buttermilk or something anything with flavor and calories.  I believe wholesome food will really make a difference.

    The three soups we made are sweet potato coconut curry(superblended went through tube too spicy!), cream of potato and broccoli cheese super blended with heavy cream & butter.

    Ten more days after Friday.  If I can stick to my schedule I get to drop one chemo.  Planning to leave PICC and PEG in place at least until I am healed and well into solid food.

    Radiation must be really advanced now and really hitting the target zone.  I was expecting to feel much worse by now.

    Hopefully I won't be too bad off at the end.

    ozy Glad You Are

    Doing so well and feeling so well.

    You are on the right track.

    This is no time to hold back-eat all you want, anything you want, and as much as you can get in.

    Nourishment and rest as often as needed.

    Wise decision on PICC and PEG be sure they are absolutely not needed anymore before removal.

    Take Care-God Bless-Russ

     

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #176
    I am starting to feel more

    I am starting to feel more tired now.  I have much more energy in the early morning if I get enough sleep.  

    Still, not doing bad considering.  I wonder if that's because I'm already on thyroid replacement?  Maybe some of the people who get super tired and lousy feeling are that way because their thyroids got cooked and aren't functioning.

    Untreated hypothyroidism can make a person feel awful.

    Finally drinking coffee again.  Not much flavor but no longer salty. 

    Starting to loathe honey.  Just the thought of putting it in my mouth or smelling it is starting to make my stomach turn.  Maybe I will just do glutamine water from here on out.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #177
    I just looked out my window

    I just looked out my window and it looks like green seedless grapes will be a bumper crop this year.

    Too bad I can't eat them likely.  Totally organic no spray or pesticide just wash off the spiders.

    I have only ten rads left.  Getting pretty tired.  Daughter drove me home today.  She will probably be driving me for the duration if I continue feeling weird and tired.

    Today's menu broccoli cheddar soup, chicken noodle(blended), maybe some cream of potato and peach yogurt with added peaches.

    Not that much flavor but somehow I've managed to reduce that awful salt taste.  Maybe because I increased fluids?  Drinking different juices and coconut water for hydration.

    I am going to rest as much as possible this weekend.  And eat whenever I can.  Kind of hard to eat too much.  I think my stomach is smaller.  I swallow a lot of air and the PEG gets very uncomfortable when I do that.  Much discreet burping and venting of the PEG tube.

    Took my pain pills when I got home.  Shooting pains in my neck.  Slept about 4 hours, ate and started some cream of potato soup that I need to finish.

    That's all I've got for now.

    Later.

     

    Ozy

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #178
    Finally the salty taste has

    Finally the salty taste has been reduced!  Drinking a cup of coffee right now.  Not doing much of anything.  Trying to save my energy for healing.  Just eating, sleeping, goofing around with tablet, doing crossword puzzles and running the tv for noise mostly.

    Taking gabapentin and vikes on the regular now because sometimes my neck feels full of stickers.

    The one thing I'm just dying to eat is a sandwich.  I can smell the bread, cheese, meat, lettuce, pickle and mayo like it's right there on a plate in front of me!  I know it will be a good long while before I can eat one of those.

    I did two feedings by tube today but I can still swallow pills and drink liquids.

    I have some really dry sore spots in my nose that I've been putting neosporin on with a qtip.

    I have a little bit more energy than I had yesterday so did a couple of very minor chores.

    Gonna get washed up here in a bit and change my jammies.  :)

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #179
    Here's how I do my eggs over

    Here's how I do my eggs over easy-cook in butter, mash up real good with a fork and add a big spoonful of sour cream.  For some reason, the sour cream makes them taste almost normal.  Not really into chewing right now because I can't use my waterpik anymore and it bothers me to chew and move stuff around in my mouth now.  Trying to just eat stuff I can straight up swallow.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #180
    Here is an idea.  I can use

    Here is an idea.  I can use rice as a base for smoothies.  Cook on stove until mushy with lots of water. Blend.  Add instant breakfast, cream, protein powder, fruit to flavor.  I did a rice pudding type deal just now with brown sugar, tiny bit of cinnoman and grated nutmeg, butter, cream and an egg.  Was easy on my mouth and my stomach.

    Might do a savory version for dinner and add beans to make protein.

    Feel a little dizzy and my vision is toast today.  Can still see with glasses but if I take them off it's much worse than normal.

    I have been meeting hydration goals but keep falling just a little short on calories.

    Have only lost four pounds since chemo and rads started so not too bad I guess.

    Could use a nap but can't sleep.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #181
    So for dinner, I took a

    So for dinner, I took a handful of very soft, moist chicken thigh meat that I cooked in the crockpot amd blended it with the broth that was in the bottom of the pan.  I added cream, milk, butter and some of my mushy rice and blended it real good.  It was very tasty and felt nourishing.

     

    I wonder why I can taste some things and not others?  Maybe what I can taste is something my body needs?

     

    Inam looking forward to when this is over and my taste comes back.  Maybe things will change enough that I can eat fish again.  I haven't been able to eat fish for years because ot turns my stomach after one or two bites.  That is really weird because my all time favorite from McDonalds used to be Filet o Fish, I loved english fish n chips saturated in malt vinegar and tartar sauce and tuna sandwiches were yummy.  I don't know why I can't eat fish anymore.  Maybe because of my thyroid problem?  That's about when the aversion to fish started-when my thyroid really started acting up.

    I can still eat shrimp and lobster though.  Weird.

     

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