Concerned for my (love) Bucket
This is the wifey.
I would like to know if somebody has been in the same position, and how they fared after all the sessions.
Will he feel bad for a long time afterwards?
My goal is to take him on a small vacation in mid-May.
My favorite hubby Bucket has tongue cancer squamous cell carcinoma stage 3.
He is on radiation number 11 of 35. He is on chemo number 3 of 7.
End date radiation: April 5 End date chemo: March 30
I have survived cancer 6 times but never had tongue cancer and have only had chemo and surgeries.
I bought a Vitamix and have been making soups and protein drinks.
His ability to eat changes daily so it is hard to stay ahead of.
He has a power port for his chemo, blood draws, and hydration therapy.
Soooooo anybody have some experience with this very specific cancer?
I thank you in advance.
Kimmy Poo who loves Bucket
Comments
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Nice....I'm sure its
Nice....I'm sure its different for everybody but I'm almost done with treatment and my rad doc says for most patients doing the same thing (33 rad treatments / 3 chemos) things in the mouth started to return to fairly normal or at last start improving, in the 3-4 week range so I'd say your timing is good. That said, I didnt have it on the toungue so get some more opinion
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Kim,
I had Nasopharyngeal (Nasal Passage) - but the treatment sounds like the same.
I suspect he will have more mouth pain, than I did. So that could get challenging.
I was able to chug my girlfriends smoothies the whole time, so I was lucky.
Everybody is different, and I don't know (or need to know) how old he is. If he's younger - he'll likely recover sooner.
If he finishes early in April, he might really appreciate a vacation in May!
I finished treatment at age 59 - so it took me a couple months, before energy started returning.
I hope his outcome is the best possible one - for both of you!
mg
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Thanks for your insightThe Cincinnati Kid said:Nice....I'm sure its
Nice....I'm sure its different for everybody but I'm almost done with treatment and my rad doc says for most patients doing the same thing (33 rad treatments / 3 chemos) things in the mouth started to return to fairly normal or at last start improving, in the 3-4 week range so I'd say your timing is good. That said, I didnt have it on the toungue so get some more opinion
I like to report back to Bucket that other people felt better in certain time periods so each time it encourages him.
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I Do Not
Have any particular advice for your situation of tongue cancer although I had tongue cancer but it was mitigated with a small operation and getting clear margins. But I and others on here can comment on rads and chemo. But lean on your medical team for anything going on out of the ordinary and for that matter any questions at all. I am glad for him that he can still eat and I agree it can change daily but he may get to the point of using a feeding tube only for awhile. It's great he has a power port, I had one during my first cancer and they are certainly convenient and a vein saver. He may go through a lot of things like constipation, diarrhea, mouth sores from rads, and many other things. He will probably be very tired if not now later. Watch around his skin for redness or irritation from the rads and use Aquaphor or other creams to soothe it but wash it off before the next radiation. I had something else going on in my mouth with white patches during treatment that I took antibiotics for I think they called it thrush. Also, I would recommend you check out the Superthread at the top of the page in our H & N section as it is loaded with info and advice. Here is the link to it-- https://csn.cancer.org/node/261072
Wishing you folks the best-Take care-God Bless-Russ
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Yep he has run the gamut of reactions to chemo and radiationwbcgaruss said:I Do Not
Have any particular advice for your situation of tongue cancer although I had tongue cancer but it was mitigated with a small operation and getting clear margins. But I and others on here can comment on rads and chemo. But lean on your medical team for anything going on out of the ordinary and for that matter any questions at all. I am glad for him that he can still eat and I agree it can change daily but he may get to the point of using a feeding tube only for awhile. It's great he has a power port, I had one during my first cancer and they are certainly convenient and a vein saver. He may go through a lot of things like constipation, diarrhea, mouth sores from rads, and many other things. He will probably be very tired if not now later. Watch around his skin for redness or irritation from the rads and use Aquaphor or other creams to soothe it but wash it off before the next radiation. I had something else going on in my mouth with white patches during treatment that I took antibiotics for I think they called it thrush. Also, I would recommend you check out the Superthread at the top of the page in our H & N section as it is loaded with info and advice. Here is the link to it-- https://csn.cancer.org/node/261072
Wishing you folks the best-Take care-God Bless-Russ
I went to the store and bought products for diarrhea, constipation, mouth sores because he got it all. Poor Bucket!
I get thrush from my lung cancer nebulizer treatment and I like to just use Hydrogen Peroxide so he can use that too. Just let it bubble until it fills your mouth!
Then go get a rabies shot for foaming at the mouth.
Thank you for the link.
You are kind.
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Kim,Kimmy Poo said:Yep he has run the gamut of reactions to chemo and radiation
I went to the store and bought products for diarrhea, constipation, mouth sores because he got it all. Poor Bucket!
I get thrush from my lung cancer nebulizer treatment and I like to just use Hydrogen Peroxide so he can use that too. Just let it bubble until it fills your mouth!
Then go get a rabies shot for foaming at the mouth.
Thank you for the link.
You are kind.
My girlfriend mixed up salt, baking soda and water - and if I used that several (12?) times a day - it seemed to work pretty well for keeping my mouth OK.
I don't know if that's applicable to your situation, but I see a lot of people on here who have had good luck with that.
It's a tough fight - and I'm 100% sure he's glad you're in it with him!
Hang in there - you'll be finished and looking back on this, before you know it...
mg
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I think that may be a little
I think that may be a little too soon but as they say, "everybody is different" so it could be just fine. I felt pretty good at the 3-4 week mark but I had a lower dose of chemo and radiation so I worry it could be a week or 2 early for him. I hope I'm wrong though!
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I know I'm walking on the hairy edge...Remington25 said:I think that may be a little
I think that may be a little too soon but as they say, "everybody is different" so it could be just fine. I felt pretty good at the 3-4 week mark but I had a lower dose of chemo and radiation so I worry it could be a week or 2 early for him. I hope I'm wrong though!
Thank you Remington25 it would be day 49...problem is I've cancelled this trip 3 times and the airlines has an expiration date and my 92 year old Wicked stepmother does too.
I could take my son instead but I know this would hurt Bucket's feelings! He gets a lotta love from MN...
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Yea I made that mixture toomotorcycleguy said:Kim,
My girlfriend mixed up salt, baking soda and water - and if I used that several (12?) times a day - it seemed to work pretty well for keeping my mouth OK.
I don't know if that's applicable to your situation, but I see a lot of people on here who have had good luck with that.
It's a tough fight - and I'm 100% sure he's glad you're in it with him!
Hang in there - you'll be finished and looking back on this, before you know it...
mg
Thanks MG it turns out that they suggest
1 quart H20+1 teaspoon salt+1 teaspoon baking soda.
That works and I have it mixed up for him to use when needed.
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Just a FYI about my profile picture
I took a drawing class and I wanted to draw my stuffed raccoon Racuzzi. Why? Because I attempted a clay sculpture and tried for 4 months to get that dang clay to look like my stuffed friend...Cuzzy for short. The clay medium got the better of me and dried up in parts so that I could no longer modify. Okay so I kinda threw the dried up sculpture and it busted into pieces.
Next chapter...use PENCIL instead of clay.
Enter this drawing...I did a real raccoon instead of my stuffed buddy but I went ahead and bought a frame and told myself I was done.
I had a raccoon. I did it.
Yea that is the fighting spirit cancer survivors need...I am a 6 time cancer survivor trying to teach a first time survivor.
So Cheers to Cuzzi he is proof that YOU CAN DO IT!!!!
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Radiation 25 of 35 and Chemo 6 of 7 and what tastes semi-okay?!
Bucket is throwing away cans of chunky soup left and right. He says nothing tastes good and everything has a platinum taste. I have to agree that some of them have a strange smell to me.
I have tried making pork butt and chicken and those he couldn't eat.
That's why I decided to try to make a blah vegetable soup from scratch with all fresh veggies. I didn't use spices or tomato base and I made it smooshy. This is easier if you have an Instant Pot. I made 1/4 cup orzo with 1/2 teaspoon salt. I steamed small cubes of Yukon potato. I steamed fresh spinach and chopped. I drained a can of Cannellini beans.
I had baby carrots, broccoli, cauliflower, celery, sweet onion and used about 6 ounces of each.
Then I prepped and cut veggies into very small florets and pieces. I diced celery and onion with 1/2 teaspoon of salt.
Then I put everything in Instant Pot and poured low sodium chicken broth over it.
Slow cooked on high for 2 hours. Finally! Something that doesn't hurt his throat and doesn't have any strange taste. It made about 16 cups.
At least this way I know he is getting vitamins, minerals, calories, and protein. The veggies provide roughage as well. Sodium is low and carbohydrates are high.
I hope he can eat the whole thing. I would be happy to share the Bucket's Blah Vegetable Soup Recipe if anybody would like to try it.
If it didn't work for somebody it could be doctored with addition of chopped tomatoes, garlic, fresh basil, oregano to name a few.
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Kim,
The eating situation can be really challenging. I found (and still sometimes find) that meat can really challenge my taste buds.
It's funny how foods drift into and out of tasting good. I'll find something I love, only to realize I get tired of it quickly.
For me, eggs have been the most consistently decent tasting food - from soon after getting done with treatment.
It will take him a little while, but he'll slowly start finding things that taste goot to him. In the meantime, I feel for both of you - as it can be a challenge!
After re-reading your posts - it appears he's only a couple weeks from FINISHING treatment!
So - by about April 10th or so ... he'll start that trip to returning to RECOVERING from it all!!!..
After that, it's the fun process of getting taste back, and remembering what was good to eat.
Hang in there - you're in the 4th quarter, now!
MG
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That sounds pretty tasty.
That sounds pretty tasty.
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Don't get constipated. Bucket was hauled off in an ambulance!This morning we were both in the bathroom.I had just given him an enema and none of it went in!He hadn't pooped in 4 days; justifying the belated request for an enema with the small amount of food he had been eating.I was getting ready to go on a hike; Bucket was on the throne.I heard him say he didn't think it was such a good idea for me to go right then.I saw that he was very, very white.I asked if he wanted 911 and he said yes.He didn't have clothes on so he wanted to get dressed; I wouldn't let him get up.That's a hard floor we have and I'm not exactly suited for catching his fall.Boy those fellas showed up in force!God bless our first responders!He was all hooked up everywhere.His pulse dropped and they were having a hard time hearing his heartbeat.Off he went in the ambulance.Luckily I was allowed to stay with him in the ER because it took a LONG time before the doctor got there.After 8 hours in emergency they finally gave him a turbo enema and he pooped like a champ.I looked in that potty and wow it looked like 10 pounds!The nurse said, "Heck, yeah...that's 10 pounds!"So we made it home and he went to bed.What an episode.Just shows how important it is to stay ahead of constipation!!Needless to say, he was pooped by that escapade.And I was relieved because he scared me big-time.0
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I bought a new non-stick egg panmotorcycleguy said:Kim,
The eating situation can be really challenging. I found (and still sometimes find) that meat can really challenge my taste buds.
It's funny how foods drift into and out of tasting good. I'll find something I love, only to realize I get tired of it quickly.
For me, eggs have been the most consistently decent tasting food - from soon after getting done with treatment.
It will take him a little while, but he'll slowly start finding things that taste goot to him. In the meantime, I feel for both of you - as it can be a challenge!
After re-reading your posts - it appears he's only a couple weeks from FINISHING treatment!
So - by about April 10th or so ... he'll start that trip to returning to RECOVERING from it all!!!..
After that, it's the fun process of getting taste back, and remembering what was good to eat.
Hang in there - you're in the 4th quarter, now!
MG
You're right MG; Bucket has consistently eaten eggs! He makes them himself in the new egg pan I bought.
I have been trying to do everything for him and then get a little depressed when he can't eat what I make...so it's better if he does it these days.
It's true that was good yesterday tastes like crap today! We shall overcome!
I keep telling him: You can do it! (In a deep Arnold Schwarzenegger voice of course)
Thank you for your insight!
Bless you and your girlfriend too
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Bucket loves the moisturizing facials I give himwbcgaruss said:I Do Not
Have any particular advice for your situation of tongue cancer although I had tongue cancer but it was mitigated with a small operation and getting clear margins. But I and others on here can comment on rads and chemo. But lean on your medical team for anything going on out of the ordinary and for that matter any questions at all. I am glad for him that he can still eat and I agree it can change daily but he may get to the point of using a feeding tube only for awhile. It's great he has a power port, I had one during my first cancer and they are certainly convenient and a vein saver. He may go through a lot of things like constipation, diarrhea, mouth sores from rads, and many other things. He will probably be very tired if not now later. Watch around his skin for redness or irritation from the rads and use Aquaphor or other creams to soothe it but wash it off before the next radiation. I had something else going on in my mouth with white patches during treatment that I took antibiotics for I think they called it thrush. Also, I would recommend you check out the Superthread at the top of the page in our H & N section as it is loaded with info and advice. Here is the link to it-- https://csn.cancer.org/node/261072
Wishing you folks the best-Take care-God Bless-Russ
He actually asked me if I would give him another one and it has just continued!
I lean his head back against my chest and massage first a serum and then Dilo oil into his poor burned up neck and throat.
I think he loves it...nah, I know he does!
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Kim,Kimmy Poo said:Don't get constipated. Bucket was hauled off in an ambulance!
This morning we were both in the bathroom.I had just given him an enema and none of it went in!He hadn't pooped in 4 days; justifying the belated request for an enema with the small amount of food he had been eating.I was getting ready to go on a hike; Bucket was on the throne.I heard him say he didn't think it was such a good idea for me to go right then.I saw that he was very, very white.I asked if he wanted 911 and he said yes.He didn't have clothes on so he wanted to get dressed; I wouldn't let him get up.That's a hard floor we have and I'm not exactly suited for catching his fall.Boy those fellas showed up in force!God bless our first responders!He was all hooked up everywhere.His pulse dropped and they were having a hard time hearing his heartbeat.Off he went in the ambulance.Luckily I was allowed to stay with him in the ER because it took a LONG time before the doctor got there.After 8 hours in emergency they finally gave him a turbo enema and he pooped like a champ.I looked in that potty and wow it looked like 10 pounds!The nurse said, "Heck, yeah...that's 10 pounds!"So we made it home and he went to bed.What an episode.Just shows how important it is to stay ahead of constipation!!Needless to say, he was pooped by that escapade.And I was relieved because he scared me big-time.Dang - I'm glad you had a good outcome in that situation; it could have gotten pretty serious!
I recall alternative bouts of constipation and then diarrhea. It was challenging to know what would hit next.
A Stool Softener (and occasional doses of laxative), worked for me.
I'm glad you were able to stay calm and get it handled - well done!
MG
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We have no modesty between us so that makes it so much easiermotorcycleguy said:Kim,
Dang - I'm glad you had a good outcome in that situation; it could have gotten pretty serious!
I recall alternative bouts of constipation and then diarrhea. It was challenging to know what would hit next.
A Stool Softener (and occasional doses of laxative), worked for me.
I'm glad you were able to stay calm and get it handled - well done!
MG
I am calm because he was scared. And I was humorous and told the Doctor he was Scared and Full of ****! Doctor said they had an official medical acronym; FOS!
He was humorous right back and the mood was friendly, light, and helpful. Butt (get it?) he was in the right place!
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Kim,Kimmy Poo said:Don't get constipated. Bucket was hauled off in an ambulance!
This morning we were both in the bathroom.I had just given him an enema and none of it went in!He hadn't pooped in 4 days; justifying the belated request for an enema with the small amount of food he had been eating.I was getting ready to go on a hike; Bucket was on the throne.I heard him say he didn't think it was such a good idea for me to go right then.I saw that he was very, very white.I asked if he wanted 911 and he said yes.He didn't have clothes on so he wanted to get dressed; I wouldn't let him get up.That's a hard floor we have and I'm not exactly suited for catching his fall.Boy those fellas showed up in force!God bless our first responders!He was all hooked up everywhere.His pulse dropped and they were having a hard time hearing his heartbeat.Off he went in the ambulance.Luckily I was allowed to stay with him in the ER because it took a LONG time before the doctor got there.After 8 hours in emergency they finally gave him a turbo enema and he pooped like a champ.I looked in that potty and wow it looked like 10 pounds!The nurse said, "Heck, yeah...that's 10 pounds!"So we made it home and he went to bed.What an episode.Just shows how important it is to stay ahead of constipation!!Needless to say, he was pooped by that escapade.And I was relieved because he scared me big-time.Thrre's nothig better for healng, than a good attitude and sense of humor!!
MG
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Two more radiations: acute sensitivity to smells & mucous galore
I sure could use the help. I am helplessly watching my Bucket suffer. All I can do if offer bowls for spitting and fresh cloths.
I am scared by the amount of mucous, sheesh it's more than a cup at a time when I empty it.
Bucket has TWO more radiations...
We were in two cars and I was behind him and he pulled over on the freeway got out of the car TWICE to barf up thick mucous.
Don't worry, I got my son to pick up Bucket's car so I could drive him home in my car.
My heart is twisting in pain and sympathy yet I helpless to make it better.
I have noticed that I am not eating either and I know I better because I'm 90 pounds wet; so I made a meal that Bucket would normally love.
He had to say he couldn't stand the smell. He has always had a bad sniffer and now it's like a hound dog.
So sad. I washed dishes and packed up leftovers right away!!
I keep telling Bucket you can do it!
I told him he's a super achiever and that he will do everything bigger, better, faster than they say.
I keep telling him I love him and he's gonna get his Pizza and hamburger REALLY soon.
These last couple of laps are tough!
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