Hello I am new to this group
I completed radiation (no chemo) for tongue cancer on Tuesday (7/15/2014). I just found this board and appreciate it very much. Doctors can tell you a lot, but those who have expierenced it can tell you much more and in terms you can understand easier.
I will be back soon.
Thanks Bill
Comments
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Hi Bill....and welcome
to our little home away from home. Congratulations on finishing treatment.....in a couple of weeks or so, you'll start seeing the glimmerings of getting better. There's someone around most of the time, and all questions get answered. So glad you found us.
p
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welcome and I will ring my bell for you
Bill,
Welcome to the H&N forum, I see you have a souvenir to document your trip (I do too). As P51 said, you are on the cusp of starting to feel better, I hope your trip wasn’t too brutal.
Rest well, you deserve it!
Matt
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Welcome to the H&N Group
Welcome Bill to the group, and sorry you need to be here. There are many that can answer your questions with Rad. I never had Rad or chemo only surgery for my larnyx cancer. You have gone through the worst and are now on the recovery part of the road. Hope it wasn't too bad. I would sugest reading the "Superthread (Read Only)" at the top. It will answer many things. Rest up and be well.
Bill
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hey, Bill, welcome to the
hey, Bill, welcome to the family. sorry you need to be here but glad you found us. congrats on finishing tx! that's a huge step. now your time becomes your's again. i hope you will stick around.
God bless you,
dj
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Welcome to the right place...
...for the wrong reason. I didn't find this group until I was two years past treatment--but was glad I did. There is a lot of accumulated experience, information and wisdom in this group, so don't be shy about asking any questions as you go from your treatment stage to your recovery stage, and beyond. Many people here have "been there, done that" and can offer a lot of advice and support.
mike
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BillMikemetz said:Welcome to the right place...
...for the wrong reason. I didn't find this group until I was two years past treatment--but was glad I did. There is a lot of accumulated experience, information and wisdom in this group, so don't be shy about asking any questions as you go from your treatment stage to your recovery stage, and beyond. Many people here have "been there, done that" and can offer a lot of advice and support.
mike
Welcome, sorry you had the need to find us but glad you did. Like you, I didn't find the site until I had finished surgery, rads and chemo. Still very helpful.
Best wishes for you and a speedy recovery
Candi
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Thanks to all of you for your responses!
It really is amazing what the internet has done for communications with people you don't (but soon will) know.
My biggest problems today are pain and eating. I am using "Magic" mouthwash which numbs the affected area and it does help a lot. I also use some lip balm called Aquaphor. I have a minor problem with that, as it seems to "glue" my lips together while I sleep and when I separate them it causes somewhat severe pain.
I also take some more powerful pain medicine (Oxycocone and Hydrocodone) which I watch very closley so as not to overdue them.
The pain is something I must live with and it will leave sooner (hopefully) or later eventually get much better.
My problems with eating are a little tougher to work with. Taste is virtually gone -- whether or not and how soon it comes back seems to vary a great deal from person to person. They had to remove what few teeth I had left completely and I will not get the dentures back until about October (their best guess). That makes eating really bad! I eat 3 scrambled eggs with some cheese ground up it them and 1 small pancake every day and that is the only solid food I can eat. Everything else comes from the powdered "JUNK". If I try to eat I have to use the magic mouthwash or the pain stops me from eating and with that I have trouble swallowing and not vomiting. They have never suggested using the feeding tube.
The strange part is that I am almost never hungry. However, I must start eating better, as I am losing way to much weight. I am 74 years old and weigh less than I have since I was 14 years old.
Well - thanks again and I will beat this one day and quit whining!
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Welcomewilpat said:Thanks to all of you for your responses!
It really is amazing what the internet has done for communications with people you don't (but soon will) know.
My biggest problems today are pain and eating. I am using "Magic" mouthwash which numbs the affected area and it does help a lot. I also use some lip balm called Aquaphor. I have a minor problem with that, as it seems to "glue" my lips together while I sleep and when I separate them it causes somewhat severe pain.
I also take some more powerful pain medicine (Oxycocone and Hydrocodone) which I watch very closley so as not to overdue them.
The pain is something I must live with and it will leave sooner (hopefully) or later eventually get much better.
My problems with eating are a little tougher to work with. Taste is virtually gone -- whether or not and how soon it comes back seems to vary a great deal from person to person. They had to remove what few teeth I had left completely and I will not get the dentures back until about October (their best guess). That makes eating really bad! I eat 3 scrambled eggs with some cheese ground up it them and 1 small pancake every day and that is the only solid food I can eat. Everything else comes from the powdered "JUNK". If I try to eat I have to use the magic mouthwash or the pain stops me from eating and with that I have trouble swallowing and not vomiting. They have never suggested using the feeding tube.
The strange part is that I am almost never hungry. However, I must start eating better, as I am losing way to much weight. I am 74 years old and weigh less than I have since I was 14 years old.
Well - thanks again and I will beat this one day and quit whining!
I am also a big fan of Aquaphor but I hear you about overnight glue. A friend (Dawn, Sweetblood, Superthread) suggested C.O. Bigelow My Favorite Night Balm. (Bath and Body Works at the mall). It seems thicker an lasts all night. Hondo uses a spray, Stoppers 4, that is ordered online for moisture overnight. Some just keep water on the side table. Taste will slowly come back. You need to pack on some pounds. Milkshake, Smoothie, cream of wheat, pudding--add some protein powder to help with muscle.
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KeysKTeacher said:Welcome
I am also a big fan of Aquaphor but I hear you about overnight glue. A friend (Dawn, Sweetblood, Superthread) suggested C.O. Bigelow My Favorite Night Balm. (Bath and Body Works at the mall). It seems thicker an lasts all night. Hondo uses a spray, Stoppers 4, that is ordered online for moisture overnight. Some just keep water on the side table. Taste will slowly come back. You need to pack on some pounds. Milkshake, Smoothie, cream of wheat, pudding--add some protein powder to help with muscle.
Nutrition and hydration are key to your recovery. I am a day out of a four day hospital stay. Another g-tube was discussed but I'm trying this on my own. The doctor told my sister food was not necessary but a minimum of six Ensure a day were essential. I have added mashed potatoes with double gravy,cream pea soup and soft boiled eggs but that's about it so far. Lots of trial and error.
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Hi there! I am new too. Iwilpat said:Thanks to all of you for your responses!
It really is amazing what the internet has done for communications with people you don't (but soon will) know.
My biggest problems today are pain and eating. I am using "Magic" mouthwash which numbs the affected area and it does help a lot. I also use some lip balm called Aquaphor. I have a minor problem with that, as it seems to "glue" my lips together while I sleep and when I separate them it causes somewhat severe pain.
I also take some more powerful pain medicine (Oxycocone and Hydrocodone) which I watch very closley so as not to overdue them.
The pain is something I must live with and it will leave sooner (hopefully) or later eventually get much better.
My problems with eating are a little tougher to work with. Taste is virtually gone -- whether or not and how soon it comes back seems to vary a great deal from person to person. They had to remove what few teeth I had left completely and I will not get the dentures back until about October (their best guess). That makes eating really bad! I eat 3 scrambled eggs with some cheese ground up it them and 1 small pancake every day and that is the only solid food I can eat. Everything else comes from the powdered "JUNK". If I try to eat I have to use the magic mouthwash or the pain stops me from eating and with that I have trouble swallowing and not vomiting. They have never suggested using the feeding tube.
The strange part is that I am almost never hungry. However, I must start eating better, as I am losing way to much weight. I am 74 years old and weigh less than I have since I was 14 years old.
Well - thanks again and I will beat this one day and quit whining!
Hi there! I am new too. I cannot begin to imagine what you're going through, but my dad was in your very shoes two years ago. Nowadays, he's is working on getting back to a normal life but recieves all of his nutrition via peg tube, as he cannot swallow. He also went through the extremely painful stage that you're in right now...I will be thinking of you. You are getting closer to the light at the end of the tunnel
Take care,
Janelle
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healing
Bill,
I had an aversion to the taste and feel of many foods for 7 months post. I lived mainly on smoothies, until the weirdness went away. Now, I eat most anything I want. Tonight I had a homemade Peanut Buster Parfait, it was great!
Keep moving forward, the pain should get better.
Matt
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I used a 'dry mouth' sprayKTeacher said:Welcome
I am also a big fan of Aquaphor but I hear you about overnight glue. A friend (Dawn, Sweetblood, Superthread) suggested C.O. Bigelow My Favorite Night Balm. (Bath and Body Works at the mall). It seems thicker an lasts all night. Hondo uses a spray, Stoppers 4, that is ordered online for moisture overnight. Some just keep water on the side table. Taste will slowly come back. You need to pack on some pounds. Milkshake, Smoothie, cream of wheat, pudding--add some protein powder to help with muscle.
I used a 'dry mouth' spray just a regular one from the chemist, but I get on better with spraying water in my mouth. When my spray was empty I filled it with water and just spray with that so much better, and cheaper.
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Type of CCivilMatt said:healing
Bill,
I had an aversion to the taste and feel of many foods for 7 months post. I lived mainly on smoothies, until the weirdness went away. Now, I eat most anything I want. Tonight I had a homemade Peanut Buster Parfait, it was great!
Keep moving forward, the pain should get better.
Matt
Hi Bill,
What kind of cancer were you diagnosed with? My guess is Mucoepidermoid Carcinoma, only because you mentioned no chemo, only rads. That is the cancer I had and it was on the base of my tongue. My doctor said that kind doesn't respond to chemo like the other types do.
Everything you've said reminds me of what I went through. My pain was through the roof for some reason. I didn't get to the eggs or any soft food for three or four weeks. (I think) Funny how your mind wants you to forget the agony you went through. Today, 2 years out, I feel good with only a few side effects.
Glad to have you with us. This is the place to find the answer to all your questions.
Tom
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WELCOME
Hey Bill,
Welcome to the group, although I would much prefer that we were not meeting due to beasty battles. We will help you through, and no doubt, you will be lending your helping hands as well. Just keep in mind that this is an ongoing journey, and not a trip to the corner Quick Mart. Best wishes...............*
PATRICK
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ONE MORE THING
I was thinking about your nutrition issues, and thought that since you are able to swallow liquids, that you should know about the complete nutrition liquid foods that have served me well for many years keeping my weight stable in the appropriate range. First is Fiber Source HN, which has 300 calories per carton, and second is Boost Very High Calorie which has 530 calories per carton; I get mine through a medical supply store. Another alternative for a liquid diet is investing in a Vitamix Blender which will blend anything that you put into it in 3 minutes to an easialy swallowed, glassy, smooth consistency. If you are interested in a Vitamix, they offer a discount on reconditioned blenders, which have their standardwarranty, for folks who have a dietary medical necessity; you can contact the company for details. I am on a liquid diet, and my wife blends our family meals for me. Hopefully you will be able to swallow solid foods more easily sooner than later, but until then you might want to trythese options. Yes, you will beat this one day, and you are sharing, not wining. Thanks for sharing...........*
PATRICK
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patricke said:
ONE MORE THING
I was thinking about your nutrition issues, and thought that since you are able to swallow liquids, that you should know about the complete nutrition liquid foods that have served me well for many years keeping my weight stable in the appropriate range. First is Fiber Source HN, which has 300 calories per carton, and second is Boost Very High Calorie which has 530 calories per carton; I get mine through a medical supply store. Another alternative for a liquid diet is investing in a Vitamix Blender which will blend anything that you put into it in 3 minutes to an easialy swallowed, glassy, smooth consistency. If you are interested in a Vitamix, they offer a discount on reconditioned blenders, which have their standardwarranty, for folks who have a dietary medical necessity; you can contact the company for details. I am on a liquid diet, and my wife blends our family meals for me. Hopefully you will be able to swallow solid foods more easily sooner than later, but until then you might want to trythese options. Yes, you will beat this one day, and you are sharing, not wining. Thanks for sharing...........*
PATRICK
Thank You for the good words and advice. I may consider that type of blender. I am really waiting for at least some time to get an indication how soon my taste returns.
I am at the point where without some return of taste I might just as well use all the powdered stuff and ensure/boost etc. I will investigate those other liquid foods you suggest.
If some taste starts to return it should make blended food at least eatable. I can eat some soup now, but without some taste I don't even bother!
It's funny, but as I surf the WEB I see more and more advertisement, articles, recipes etc. regarding food than I ever noticed before and I would love to eat lots of them!
You are right I was not whining, I was really joking.
Thanks again
Bill
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Rang the bellwilpat said:Thank You for the good words and advice. I may consider that type of blender. I am really waiting for at least some time to get an indication how soon my taste returns.
I am at the point where without some return of taste I might just as well use all the powdered stuff and ensure/boost etc. I will investigate those other liquid foods you suggest.
If some taste starts to return it should make blended food at least eatable. I can eat some soup now, but without some taste I don't even bother!
It's funny, but as I surf the WEB I see more and more advertisement, articles, recipes etc. regarding food than I ever noticed before and I would love to eat lots of them!
You are right I was not whining, I was really joking.
Thanks again
Bill
First and foremost, congratulations on completing rads, always nice to ring the bell and celebrate.
As to taste, dry mouth and being able - or even wanting to - eat you're about where I was in the first couple of weeks post rads. I had stage IV-a base of tongue and had induction chemo followed by concurrent chemo and rads, no fun. Taste, saliva etc disappeared in the first couple of weeks and swallowing anything was an exercise in masochism. After rads completed I couldn't taste anything, could barely swallow but kept at it. It was about the 3rd or 4th week before I could taste anything. I'd been using a salt water and baking soda rinse and one morning I could detect the salt! I was ecstatic!! Saliva and taste slowly recovered. By week 6 I was able to do soft foods like scrambled eggs, soup and milk but it was an exercise in courage to force myself to eat anything. Like you I had no real desire to eat, but at the same time I'd watch "Diners, Drive Ins and Dives" and long for the time that I'd be able to eat a burger or enjoy ribs again.
It was not until some 10 weeks after rads that I found I could actually swallow something 'normal' size. My first real food was a cheap $1 cheeseburger from Burger King. It took me quite a while to finish it, I went through almost an entire bottle of water, and had to put it into the microwave a couple of times to reheat it, but I managed it.
Within 5 days of that Monday, I was able to stop using the PEG tube and work on gaining some weight. Saliva came back slowly and now some two years post I am at about 85-90% of what I was. I can eat almost anything except exceptionally sour items. Raw fruits and veggies (high moisture content) I can do without any added sips. I can actually do potato chips as well, but I will need a small sip of water.
I noticed food ads all the time, I saw so many people on TV and in real life just pop something into their mouths and was so envious of them. I still am but I put it into perspective - I'm ALIVE and able to eat. So what if I have to make sure I have a water bottle,
I CAN EAT!
you will too, it just takes time to heal
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