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LIVING HELL!

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Well I have four more weeks to go. The outside looks good so far not too red. The inside that's a different story mucositis, sores on tongue and back of mouth. The pain is the worst when the mouth drys out. That is the torcher part the dry mouth hurts like hell! THIS IS LIVING HELL! I'm getting PEG tube in on Wed. I'm soooo stupid I should have known better; but I was trying to keep things as normal as possible. I don't even want to eat; so far I lost 10 lbs. At least I decided to get peg now before things really got worse! I don't care what anyone says this is the worst kind of cancer to get!!!!!

What sucks too is using oxcodone for pain relief which drys the mouth out too. I didn't want to use vicodin since it has acetaminophen in it and cisplatin is already tough on the liver!! I hope this torcher is worth it!!! :( Well, happy memorial day everyone! GOD BLESS!

Charles

rmkbrad
Posts: 177
Joined: Dec 2009

Things do get better im told, I am one month out of rad tx for neck cancer. I do agree it is the worst type of cancer treatment. I was so sick from the chemo that I did not do any pain meds, I could varly keep the PEG food down.

Brad

MarineE5
Posts: 748
Joined: Dec 2005

Charles,

I would like to suggest using the solution of 1 teaspoon of Baking Soda and 1 teaspoon of Salt in 1 Quart of room temperature water. Mix it and then rinse and gargle with it as often as you need to. I would do this every 30 minutes if I needed to. It will help semi-numb you mouth and throat. I mentioned the throat as well, because I would rinse/gargle and then spit most of it out and then let a little bit go down my throat to hit the sores down there.

It worked well for me, and on top of that, I really couldn't taste it and it didn't bother me. So, I eventually increased the amount from 1 teaspoon to 1 Tablespoon of each in the Quart of water. When I saw my Radiation Oncologist in week 5, I hadn't taken any pain med's yet and he asked how I was doing it. I told him what I mentioned here. Baking soda and Salt. He looked in my mouth and said I had sores the size of quarters and nickels in there and I should be in pain. He recommended that I start taking the pain med's in order to stay ahead of the pain. So I did start taking them, but I maintained the B & S solution as well. It is not a cure all, but can be a big help to take the sting out of what you are feeling now.

You might experience a slight burning effect at first, but it goes away fairly quickly.

My Best to You and Everyone Here

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Baking Soda and Hydrogen Peroxide Solution works well also...

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

I am hooked on the baking soda, I am 5 years passed treatment and still do the baking soda twice a day, it keeps my mouth clean and fresh and keep the mucus down.

Clearblue
Posts: 188
Joined: Apr 2010

Scam has oftenmentioned the use of L- glutamine.
I understand from readings that it has proved to be very effective.
I also understand though, thank Gd i havent experienced this myself, that neck & throat cancer treatment is ridiculousely difficult. But You will get through this.
Clear.

CajunEagle's picture
CajunEagle
Posts: 357
Joined: Oct 2009

hang tough.....you're gonna make it through this crap. Hell, if I can make it through, being such a wimp as I am, ANYBODY CAN. You da Man, Charles !!

Larry

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

I forgot to mention that since my radiation treatment started I have fluid build up behind my right ear. Doctors say that it is related to the radiation treatments and that it will go away eventually. Anyone else experience the same??

Charles

MarineE5
Posts: 748
Joined: Dec 2005

Charles,

The fluid build up is going to happen. I don't know if you had a neck disection? If so, with some of the lymphnodes removed, there will be a backup of sorts. A gentle massage can get the fluids moving again. Small circular motions and gentle, not a deep muscle massage. Remember if and when you got sunburn real bad as a kid and you would swell up from sun poisoning. Pretty much the same thing is going on with your body now in the neck area.

Right now, you are in a balancing act to say the least. It is recommended that we all take in 64 ozs. of fluid daily while going through radiation. But, that in turn causes us to bloat and retain fluids that build up. Try staying away from salt for this time, I know that I was making more trips to the bathroom with drinking all that water and other fluids.

Glad to hear that you will be getting and using the Peg tube to get the needed nutrition into yourself to fight this beast. But make sure you take in water orally each day so you don't loose the swallow motion. I know the fluids taste like an aluminum can, but keep at it.

My Best to You and Everyone Here

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Would advise you make some calls tomorrow, if you don't already have it lined-up for the Formula you will pour into your PEG. Typical for the "Home" health service people to be the ones to get the formula for you, and you have to contact them. Also, there is 4.0 Jevity (or 2.0) formula, which is both cheaper, and requires far-fewer feedings/day to get the Nutrition you need.

Sorry to hear about your condition getting worse, Charles, but all of us C&R have pretty-much been there. We got thru it, and so will you. No fun. As for the meds- there's always Morph for the roughest times. A number of us have used- we all urge caution, though.

kcass

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Charles,
I'm so sorry to hear you're in so much pain.

This is definately an agressive and harsh treatment. Your going to come through this and have the best chance to be cancer free. I can't imagine how far off that goal seems right now but it will come.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

But keep your eyes on the prize, Charles.
I recall my cousin's son, who's an oncologist, telling me when he heard of my diagnosis that this cancer is about the most painful one you can get when it comes to treatment.
But it's also one of the most survivable. You'll make it. We all did.

--Jim in Delaware

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I tried massaging, I have a lot of swelling under my chin and throat, and thought it had someting to do with the trach, I had 6 weeks of Chemo and radiation as well, and started my hyperbaric treament today, I hope something happens in a positive way, you'd think I would be seeing some sort jump for joy, with 3 doctors, and feeling like total depressed, i know there are better days ahead...When?..Sorry I frustrated Dennis

debbiejeanne's picture
debbiejeanne
Posts: 2357
Joined: Jan 2010

Dennis, it just breaks my heart to hear of all your trouble and that you are so down. I completely understand, I just wish things would start to get better for you. I know that it gets hard to be positive and to "hang in there" at times, but it will get better eventually. We all understand your frustration and pray that you will start to see the upside soon. In the meantime, remember to come here and vent when you need to and know that we are here for you. We will all continue to pray for you.
God Bless you friend,
Debbie

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

It was pure hell, sorry, I can't explain it to be any worst, i was radiated for 6 weeks, which it was too much when all was said and done, my neck bleed, seeped, was raw, i was throwing up for 2 weeks straight and drank nothing but water, i lost a total of 60lbs. Get The Peg Tube my friend, I fought it and bypassed it and it was too late to have it put in when it was time, the hydrocodones, where like eating popcorn, anything to deaden any pain, so I could get some water in me, I would get up in the middle of the night and take tub baths, literally turning upside down to drink water, my throat burned and was so sore. The docotrs precscribed CAPHSOL, for the sore in my mouth, ask for it, hopefully your insurance will pick it up, it ran me 30.00, the insurance companny paid 500.00. I continued to work throughtout my illness and going to work, i had no sick days, we are not provided with them thank you the good old USA, i would just not eat, and go to the bathroom and puke, yes, I did this to keep my job, even in this economic times, had no choice. My radiation ended January 25th, i put an extra 22 lbs on before radiation started, I heard all about what would happpen. I started at 202, and went down to 140lb, I have recently over the last 3 weeks out on 14lbs....the taste buds will come back, everything i loved to eat, went away. either tasted like burnt steel, or throat hurt so bad, it was better just to past it, and hope i would wake up the next day alive. I am sorry, this is cancer and tehy told me they woud take me close to death, they weren't lying, tehy go tteh cancer, but too much radiation and i got stuck with a trach, I start tomorrow with hyperbaric therapy. I've heard nothing but great results with this, I am holding a positive light for this is my last stand, I want this trach out, and my damage repaired and tehy say this could help me greatly, Hold tough, I know it's a rough road my friend. Any questions you have, buzz me, I will try to answer, it's a #@$%^, and I've hated it...the people here are great, and to let off some aggresion to others with the same problem...Take Care, God Bless..Dennis in Tennessee

Tanager75
Posts: 86
Joined: Aug 2009

I had to learn to keep it in today. When I looked ahead, the treatment seemed impossible to survive, may not of without the PEG. I believe around week four I began trudging toward the goal of surving a day at a time. Nine months out things are so much better (great is a better word, I'm fishing again, doing some woodworking, getting ready to do relay for life...). This site has been really helpful. I read it almost daily and I'm still learning.

Hang in there, IT GETS BETTER!

mark

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Charles,

Sorry to hear you're going through the mill. I had a pretty rough run too so understand your drama. Just get through each day and post here for answers as you will get more answers here than from your Doctors usually.

As CB said, the L-Glutamine powder is very good for a number of things. It will help your mouth heal faster, prevent muscle tissue loss from your weight loss, and it will also neutralize burning in your mouth as it will probably get worse before it gets better and you have the post treatment period to go through. Use it as a swish n swallow. You can take 2-4 Teaspoons a day or more. Mix a heaped teapoon in a glass/bottle of water and keep one with you all the time. Drink it. At about week 4, I could'nt even drink water without it as plain water burned too much. Buy a large tub (500cm - 1000gm) as you should use it for 6-12 mths while you heal.

Silymarin (Supplement) = milk thistle extract) is very good for your liver.

I rotated the pain meds and vicodin was good at times but watch your dosage as you know. Morphine syrup/IV was also important for the roughest patches.

Once you get the PEG, you should stabilize your weight. I used Vitashake instead of the regular Dairy based products (Ensure/Boost/Jevity) and found it great though a bit more expensive. Reducing dairy can reduce the mucus somewhat. Also try to do some exercise, 'squats' - (lots of squats), walks etc to keep movement and your digestion going as the meds and lack of activity will play havoc with your stomach.

Hang in there Charles and keep us briefed. You will get through.

Scambuster

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Sorry you are having a rough time. My dad is abou t1 week ahead of you and is starting to get the really sore throat. He swears by the baking soda/salt mixture. He uses it all day long and the magic mouth wash when he gets ready to eat.

You will survive this and things will get better. Hang in there and stay strong.

Puma

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