Not As Bad...as I feared

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Not As Bad...as I feared

I am in my 5th week of Radio and Chemo treatments for Neck and Head Cancer.

I wish only someone had informed me that something as simple as a 500mg dose of acetamynophen twice a day could make a big difference in managing the swelling of the throat.

    I decided before beginning treatment that a feed tube was simply not an option...and believe me, paid a stiff price in weight loss and dehydration in weeks 2 and 3.

   By the beginning of week 4 taking acetamynophen reduced the inflation and pain enough to allow me to drink my 1500 calorie goal.

   

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Occasional Contributor

Re: Not As Bad...as I feared

I'm so happy to meet you!.. You sound exactly like me... Determined not to have feeding tube!!!.. Tounge cancer with neck dissection and partial glossectomy. Second week of radiation now on a 33 course with 2 chemo, 1done. Feeling good now but I know what's to come. I'm most interested in bareing through it and toughing it out without the feeding tube.. I found the same with Advil 400mg for specificly a major two week headache but have found out quickly that it aides in the soar and swelling throat!... So... Do you have any more words of wisdom for another one that refuses the TUBE? 

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Anonymous
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Re: Not As Bad...as I feared

You are all so amazing how you cope with all that and decision making. 

I am newly diagnosed with PNET Carcinoid Syndrome in august 2018. I have chosen not to have treatment.

I dont know whats to become of me if i do.

I will only have surgury if its 100% nessecery.

I refuse treatment as it is incurable at the end of the day and i think why be sick slowing down the tumor when treatment makes me sicker and operations will change my life forever.

Thats if i survived the high risk procedures they want to do.

But thats just me and my situation ...everyones is simmiliar but differant. Best wishes for all of us.

Regards

David

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Re: Not As Bad...as I feared

You can do it!

I'm now at the 6th week with Radio and chemo and the throat pain is manageable now.  I tore up into a Rotisserie chicken this week and i can tell you it felt like heaven!

    The mouth ulcerations and pain is pretty much behind, but appettite is a big issue-non existent.  The problem after that 4th week for me was just forcing myself to eat.

Better now but changes daily.

   I found during those painful swallow days that precooked  shrimp microwaved in lime juice then smothered in a garlic butter sauce really went in and down easy with minimal pain or discomfort. 

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Re: Not As Bad...as I feared

David...i respect your decision but let me share this.

   Alongside the throat cancer i am also diagnose with stage three kidney disease.  Next stop is plugging into a dialysis machine...which I WILL NOT do.

   But if the treatment allows a few more days before the inevitable where something more can be accomplished, i believe its worth the Hell Trip.

   You sure that what you have is terminal?

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Re: Not As Bad...as I feared

Hey Bugzapper,

   Week five caught me with a nasty case of nausea in public.

    They (my esteemed Quacks aka Drs.) had prescribed ondansetron for nausea but I hate medications from the establishment and tried chewable Ginger tabs.

   They work great and only had to use them twice or thrice to allay nausea.

   P.s. i know that dairy products are supposed to be anathema for us Mucosa guys...but 6oz of milk and 3 scoops of ice cream pack about 350 calories that slide past a sore mouth and throat...

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Occasional Contributor

Re: Not As Bad...as I feared

You rock!!!!... I'm in maybe day two of the mucous shit. Little soar around the gums but I'm eating like a horse. No changes there yet.... Did I read correctly that your stuff went away before you treatments were over?.... I'm also wondering if your dealing with a chemo?. I've got one  session under my belt, one coming up on Wednesday and then they want to do another at the end.

I'm loving your info and slight sarcasm.. Thanks for the giggles 

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Re: Not As Bad...as I feared

Hey BugBugzapper...

   Yah I'm doing the Chemo once a week.  I've got two more weeks to go come Monday.

   Uh, the only thing that eased back after i started taking acetaminophen was the swelling of the throat at the soreness in the mouth.

   Their Px for Oxycontin didn't help at all with the pain.

   Now ending week 6 i can tell you i can already eat solids...just my soddy appettite won't cooperate so I'm still struggling to eat around 1600 to 1800 calories a day.

   What i am finding is that i am basically living on the couch.  Hard to explain...it's like that's all i want to do...read and sleep, eat a bite, hit the Loo and back to the couch.

   

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Re: Not As Bad...as I feared

This is the home stretch-last 4 Rads and 2 Chemos.

   It occurred to me that maybe the way to beat fatigue is to get back to exercising.  Just situps, pushups and yard work today.

   Went nuts yesterday and ripped into a kettle cooked potato chips bag.  Boy can you spell Day After Throat Pain?  But i tell you-oh they tasted wonderful...thank God for Acetamynophen!

   

    

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Re: Not As Bad...as I feared

A little exercise goes a long way improving energy level, no doubt.

   I had stopped my normal routine of situps, pushups and kata when my calorie intake dropped below 1000.  Getting now tasteless stuff past mouth pain, swollen raw throat and heaving stomach was a fight a bit beyond me.  It took a week before experimenting with different food items got me over the 1000 calorie mark and soon to the 1200-1400 calorie safety net.

   My ideal weight is 150 but I went into Chemo/Radio treatments at 162.  Being an Over The Road truck driver (Yah-you sit and stress for 11 driving hours, eat and snack then sleep for 10 hours) doesn't make for staying trim, so I have always had an exercise regiment to follow in the truck.

   My problem with eating started during the 4th week, by the way, and discovering acetamynophen really helped alleviate throat swelling on the 5th week made the difference.

   Just 2 days back into exercise mode-and no, I'm nowhere near my activity level-I already feel more energetic.

   By the way-the old formula of multiplying your weight x 10 (in pounds) and adding about 400 calories does come close to calories needed to maintain my cancer patient weight.

    I mean-how many calories does one need to to from the couch to the kitchen to the loo and back to the couch? 😁.

   Last week of Radio, 1 more Chemo.  Do whatever it takes to get through each day and remember to smile because this is harder on the ones we love that it is on us...

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