Squamous Cell Radiation Left Vocal Cord HELP PLZ

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Squamous Cell Radiation Left Vocal Cord HELP PLZ

by Rsearles on Mon Aug 07, 2017 03:09 PM

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Hello everyone I'm new to cancer compass, so ill start by introducing myself. My name is Ron and I'm 31, im not a smoker, just seem to be unfortunately a little unlucky. I was diagnosed with squamous cell cancer on my left true vocal cord and after consultation i chose radiation over complete removal of the cord itself. I'm heading into my 4th week and the pain of swallowing is overpowering. Brings me to tears when i wake up in the morning, even after buying a humidifier in hopes of a little bit more moisture in my room. Im noticing similar threads about this and I'm just looking for tips or pointers on how to deal with this pain. I can barely eat anything, i can manage to get SOME soups down but even that is torturous. The doctor gave me 1000mg norcos that seem to only make me nauseous due to the fact i don't have much in my stomach and do very little for the pain honestly. I'm unsure of if i should continue treatment or stop, i am in a position where i feel like i can't get any relief at all. I'm sleepless and miserable to say the least. Please if anybody can help me out or give me any pointers. I've been prescribed magic mouthwash and honestly that numbs my throat everywhere except for where the pain is consistent. I can barely swallow my own spit. 

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by PopPop on Mon Aug 07, 2017 09:38 PM

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Ron, 

Sorry that you are here seeking answers to your questions. Yes, radiation is rough and the "Magic Mouthwash" is short lived. If the Med's the Doctor is giving you aren't working, let them know right away. I am sure they can give you something else that might do the trick.

I was unaware of "Magic Mouthwash" when I did my treatments and relied on the Baking Soda and Salt solution to semi-numb my mouth. I would rinse and gargle as often as every 20-30 minutes if I felt I needed to. It helped me a lot. I was also on pain Med's starting around week 4 and used them for a few weeks after my final radiation treatment. It was called Nuerontin(sp) and I was up to 1,200 Mg's a day for a spell, then weaned off of them.

I had no choice of whether I would have a PEG Tube, so I could use that to get nutrition and calories in. You are about half way done, hang in there, it is bumpy for sure. but you can do it.

My Best to You and Everyone Here

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by Whitewhale on Wed Aug 09, 2017 12:25 AM

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Ron like pop pop said hang in there it is tough I have the same as you. Had 28 radition treatment. And it gets tough around half way. But you will get threw it. I had cancer of the glottis on the vocal cord. I did lose my voice totally after treatment was over for 2 weeks. Do not drink cold or hot liquids and eat real non chewy foods like mashed potatoes ,eggs. And such. I will be rooting for you so keep strong and keep your chin up. All the best to all Bob

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by atcbugsy on Wed Aug 09, 2017 10:31 AM

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Hiya Ron,

PopPop and Bob have given excellent advice.  I will reiterate what they said, specifically that if you're in that much pain, tell your doctors.  There is nothing wrong with being truly "medicated" to get through this.  After all, your situation is temporary.  Being on Hydrocodone or Fentanyl to get through this will not make you a drug addict.  You're going to be brought to the brink, but you will make it back.  Use whatever means necessary to make it through.  Get on the drugs and get rid of the pain.

It's not too late to get a PEG tube.  I fought it until I had to become an inpatient and by then it was almost too late.  Get the PEG tube now.  Get the calories and nutrition you need to help make it through this.  Otherwise, you're starving your body and are getting weaker everyday.  You can still eat by mouth with the tube, it's just that the tube ensures you'll get the caloric intake you need for your body to work.

Stay strong and know there is light at the end of the tunnel.

Best of luck.

Bugsy

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by SkanJim on Wed Aug 09, 2017 08:58 PM

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Hey Ron,

I'm with Bugsy, if there is any way to get a peg, do it.  I had both a port & a peg in the same procedure just before I started radiation. 

I also lived on liquid Hydrocodone for about 6 weeks. This is why they invented pain meds.

Also please take time to take care of your teeth, even if it is just brushing them gently with a prescription high flouride toothpaste and leaving it on for a few minutes, a couple times per day. Your dentist office should be involved in your care. If they aren't, call them.

You can do this. Focus on today. Take on tomorrow, tomorrow!

Jim

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by Sdurnell on Thu Aug 10, 2017 05:54 AM

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Ron,

You've had great advice so far, and I'd just like to second it.  Make sure your doctors know about the pain because you should be as pain free as possible.

And think about getting a tube if you are not getting enough to eat.  I had to have one placed partway through radiation, and it ended up saving my life.  And even with the tube I lost 1/4 of my body weight.  

You need extra calories and protein for healing from this brutal treatment.  Keeping on top of the pain is essential, too.  Magic Mouthwash, a prescription, numbs your throat enough to possibly help you eat more.  Rinsing with salt and baking soda also helps and can be done as often as you want.  And experiment with the temperatures of foods, as some are more tolerable than others.  

Smoothies can be good.  Be sure to add all the calories you can--I used my blender to grind up nuts, which were a great source of protein too.  Add cheese and cream to dishes to up the calories.  They should be monitoring your weight to see if you need more help, say, from a dietitian.

Best of luck to you.

Susan

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by Diamond_David on Thu Aug 10, 2017 02:18 PM

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You need a feeding tube, I resisted then broke down and got it, not so bad. Will save your life in more ways than one

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by MarinS on Thu Aug 10, 2017 04:14 PM

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I completely agree with what everyone else has said. Although I am a long-term-in-recovery alcoholic, I took all of the medication prescribed and, believe me, that was alot! I don't know how anyone can survive this very, very difficult course of treatment without very strong, effective pain medication, so do not hesitate asking for as much as you need (as long as you stay within a safe dosage, of course). I took hydromorphone round-the-clock and had high-dose fentanyl patches as well. Halfway through, I got a PEG tube and that saved my life since I was rapidly losing weight because I just couldn't eat.

I know that this all sounds so grim and horrifying, but these treatments are truly effective in a majority of cases, so please hang in there and complete your treatments. It will be worth it...I promise!

Sending you positive, healing vibes...

Marin

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by Peaman on Fri Aug 11, 2017 09:31 AM

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On Aug 07, 2017 3:09 PM Rsearles wrote:

Hello everyone I'm new to cancer compass, so ill start by introducing myself. My name is Ron and I'm 31, im not a smoker, just seem to be unfortunately a little unlucky. I was diagnosed with squamous cell cancer on my left true vocal cord and after consultation i chose radiation over complete removal of the cord itself. I'm heading into my 4th week and the pain of swallowing is overpowering. Brings me to tears when i wake up in the morning, even after buying a humidifier in hopes of a little bit more moisture in my room. Im noticing similar threads about this and I'm just looking for tips or pointers on how to deal with this pain. I can barely eat anything, i can manage to get SOME soups down but even that is torturous. The doctor gave me 1000mg norcos that seem to only make me nauseous due to the fact i don't have much in my stomach and do very little for the pain honestly. I'm unsure of if i should continue treatment or stop, i am in a position where i feel like i can't get any relief at all. I'm sleepless and miserable to say the least. Please if anybody can help me out or give me any pointers. I've been prescribed magic mouthwash and honestly that numbs my throat everywhere except for where the pain is consistent. I can barely swallow my own spit. 

Hi Ron, I really feel for what you are having to endure, if you find your weight is dropping off of you, please ask for a PEG that way you will at least stabilise any weight loss you will also be more energised, also as you won't be trying to swallow the pain will reduce dramatically . I am surprised your consultant didn't fit the peg at the offset as your problems are normal. Don't worry about the idea of a PEG I have had mine over 6 years and bolts feed 4 times a day, although I am well past retiring I still work 12 hrs a day which has helped me not dwell on things sure I have bad days but as long as I have more good days that's fine by me. If you after trying to eat or before if you feel really nauseous get your Doc to prescribe Domperidone suspension that will solve that problem. Hope that helps a little, you will get there stay strong however hard that may seem. Feel free to chat if it helps. Regards and best wishes Graham

RE: Squamous Cell Radiation Left Vocal Cord HELP PLZ

by EDWARD123 on Sun Aug 13, 2017 12:12 AM

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yes  i went thru similar  ,especiallynafter my throat surgery,,could not swallow ,,or eat from my mouth ,,so my wife had to tube feed me thru the nose for 3 months with simalac and similar products that were not hard at all ,,smooth ,to help get them down ,,lost a lot of weight ,,then i had to take radiation treatments for  6 weeks  and that made it even more difficult  for all of it ,,i  just had to live with it ...after the 3 rd week of radiation is when you will really feel it ..look out then   and my throat even to this day will never be the same ,,,also cannot talk right or speak ,,difficult to pronounce words and all ,you just have to  hang in there ,,

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