new to group and questions? tonsil, tongue and lymph

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RE: new to group and questions? tonsil, tongue and lymph

by hisprincesstoo on Thu Nov 13, 2014 09:10 PM

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hi all   I got my mask today and ct scan simulation.  Only took 45 minutes.  I took one anxiety pill, but prob didn't even need to take that.  the lady doing it was great, she shared with me that she has some friends who pray for their Christian patients, n had my music all ready.  She took time to form it big around my nose so there was no uncomfortableness, and that I was laying in a position that will be comfortable for all 39 treatment days.   She recommended we start up after Thanksgiving also, so I can have a meal with my kids.  She was also able to use my good vein.  I'm feeling much better about all this, but then again, I'm still medicated, right? lol

Thank you for sharing your experiences with me.  My best to all of you.

RE: new to group and questions? tonsil, tongue and lymph

by billscampbell on Fri Nov 14, 2014 03:35 PM

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My experience is somewhat different than others.  I did not need radiation or chemo (no cancer in the margins or lymph nodes).  I had surgery to remove the tumor, which was attached to the tonsil and part of the tongue.  The only effect has been that  I can't stick my tongue out straight--it goes to the right.  My advice: make sure your doctors have done many of these surgeries.  And, of course, the same is true for the radiation and chemo treatments.  Best wishes!

RE: new to group and questions? tonsil, tongue and lymph

by PopPop on Fri Nov 14, 2014 07:32 PM

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Glad to hear that you are able to start after Thanksgiving. My routine was broken up as I started the week before Thanksgiving and it ran thru Christmas and New Year's as well. Just made it a little bit longer in the number of weeks, but all is good.

My Best to You and Everyone Here 

RE: new to group and questions? tonsil, tongue and lymph

by hisprincesstoo on Fri Nov 21, 2014 02:38 PM

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well, I'm now the proud owner of a feeding tube and port with a whole week to recover from that.  All went well.

treatment is scheduled radtiation to start dec 1st, 39 days, then chemo dec 2nd.

waiting now.  Nothing has come as a suprise, thanks to you guys helping me.  I'm so thankful to have found this site.  

RE: new to group and questions? tonsil, tongue and lymph

by PopPop on Fri Nov 21, 2014 03:22 PM

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Enjoy your time before your treatments. Now that you have a plan, I am sure you are geared up to get started. Your days will be busy with the routine of the Radiation schedule.

Main thing is to stay hydrated, this is very important as things can snowball once you start to fall behind with fluids. A quick and easy test is the pinch the skin on the back of your hand routine. If your skin stays up for more then several seconds, you need fluid.

Enjoy your Thanksgiving

My Best to You and Everyone Here

RE: new to group and questions? tonsil, tongue and lymph

by hisprincesstoo on Sun Nov 23, 2014 01:16 AM

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hi  a couple more questions now.  I've had my port and feeding tube now.  How long did it take for you guys to heal from this, and what did you feel?  

The port (weds) feels really funny.  I'm aware of something inside me, sometimes it still hurts.  it is harder to swallow now, I choked on my vit last night and moved my feeding tube.  I'm quite overweight, and it was clamped down quite uncomfortably over the fat layers.  some of this seemed to pop out when I choked.   the nurse didn't seem real worried about it.  no drainage still, nor fever.  

so, What have you learned about these things?

RE: new to group and questions? tonsil, tongue and lymph

by Sdurnell on Sun Nov 23, 2014 11:22 PM

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Sorry, I did not have chemo, so no port either.

But the tube healed quite quickly.  I had mine placed during treatment (yes, I wimped out, frightened that I was existing on 400 calories a day, and having pneumonia as well) and was using it within a few days.  I had no real problems with it at all, except with the connection.  A couple of times when I was doing a pump feeding overnight I woke up in a pool of formula!  My home care company said the surgeon had used a tube with an inferior connection, so a nurse in their office switched it out for a better one.  Painless and quick.

I'm sure the situation with the port is more complicated, though.  I hope you're feeling well by the time you need to use it.

Susan

RE: new to group and questions? tonsil, tongue and lymph

by hisprincesstoo on Sun Nov 30, 2014 05:17 PM

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well, I begin treatment tomorrow.  

one last question.  I've heard oils cause the radiation to burn your skin.  I've been taking coconut oil to prepare my throat for the onslaught . . . should I quit that?  any experience with this here?

RE: new to group and questions? tonsil, tongue and lymph

by Sdurnell on Sun Nov 30, 2014 10:29 PM

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On Nov 30, 2014 5:17 PM hisprincesstoo wrote:

well, I begin treatment tomorrow.  

one last question.  I've heard oils cause the radiation to burn your skin.  I've been taking coconut oil to prepare my throat for the onslaught . . . should I quit that?  any experience with this here?

This is really something you need to ask your doctors, or the dietitian if there is one you are consulting with.

I'm not sure whether you mean that you are using the coconut oil internally or on your neck.  I was specifically told not to take any supplements including vitamins during my radiation.  Even before I became dependent on my feeding tube, they said that no one knows how vitamins and others affect tumors, but there might be a chance that they would help them grow or resist the radiation, and of course we didn't want that!

If you're talking about putting it on your skin, ask the doctor about that as well.  They don't want you putting anything on it for at least several hours before the radiation session.  My doctor gave me emu oil to use afterward and at other times.  When the pain and "burns" got too bad, he gave me a prescription for something that I think had a steroid in it that really helped.  I had a neck that looked like purple spoiled raw hamburger, but it never blistered.  So I think I got off pretty well.

All the best tomorrow!

Susan

RE: new to group and questions? tonsil, tongue and lymph

by caroline4 on Sun Nov 30, 2014 10:32 PM

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I was told to to put absolutely nothing on my neck for the entiredurationof treatment - afterwards what and how much is entirely up to you. I had no burning sensation at all.
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