CSN Login
Members Online: 19

We are over loaded with information!

tgcap's picture
tgcap
Posts: 12
Joined: Aug 2013

Everyone is so great in helping us  learn about what we are up against. But, gosh, right now I hv to say it is overwhelming. Just coping with the acceptance of CA the up coming first day of testing, and then the chemo. It is driving us a little over the edge. 

we need to know all this, because I don't want our lack of knowledge to miss a drug like amiphostine to not be an option. Just learned about that one. You would think the docs would go over all options to protect you. Now maybe they will. We hv not been to the first apt yet for start of  treatment. But We want to be armed to fight with all the information available. 

Is there something to can place in your mouth to protect the tongue From rads bouncing off fillings? Someone mentioned cotton. Could you use the plastic mold used when you whiten your teeth? Or does that not help? 

Anyway thks all. Tough week end coming. Go in Mon for pet scan then Tues swallow testing Wed pic Thrus we find out which arm of he MDAnderson research treatment we get Then chemo. BAC caregiver.

KTeacher
Posts: 938
Joined: Jan 2011

It can be overwhelming.  One day at a time.  Take a notebook with you, take notes at all appointments.  You can do this.  Ask questions and vent when needed.  Being a caregiver is tough, watching your loved one go through all of this.  Mask, I had a mouthpiece that was put onto the mask, it was the doctor's decision, I didn't know anything about it.  I didn't find this site until after my first treatment was finished.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

My dentist made me a mouthpiece, to protect my tongue and cheeks from radiation scatter from my fillings. Darn radiation doc would NOT let me use it. Didn't seem to think it would help.  I ended up with very severe burns down the sides of my tongue.  Still have white scarring there, three years later.  Other folks here were able to use theirs, with great success.

Keep taking this one step at a time.  Write down your questions and carry them with you.

 

Deb

phrannie51's picture
phrannie51
Posts: 3731
Joined: Mar 2012

feeling like I'd been hijacked on an airplane and then being dropped in a land where I didn't know the language or the customs....totally boggled.

If you don't get a satisfactory answer from the Oncologist on something, ask the Rad Doc....there is no one-upmanship with a disease that takes at least 3 Dr.'s to handle. 

Not very many of us get Amifostine.....I got it, and John (Skiffen), StacyE., and a couple of others.  It's supposed to preserve the salivary glands....so far, I haven't noticed a whole lot of spit in my mouth....however, the one thing we'll all agree on is we didn't suffer through the horrible mucous that those who didn't get it.    The Rad doc should know about protectors for the mouth, but if you don't get an answer from him....ask your dentist....

Another presciption you might want to ask the Oncologist about is Mugard.....my Onc just handed me a bottle and told me to try it, if it worked then great....it did work to keep mouth sores at bay all during radiation.  Some Onc's don't even bring it up.  Ask the Oncologist what he's got up his sleeve for nausea during chemo....There are a number of good meds out there to use, but I keep hearing of people who weren't even offered Emend.....it is the best for the first 3 days after chemo.

Write down the things you're hearing here to ask about....the meds, the mouth pieces, etc.....and take your questions with you.  I had my sisters go with me so there were more than one set of ears.

Last but not least....trust your Dr.'s....it's hard to put a loved one's life (or your own) into someone else's hands....but we almost have to with cancer.  You're in the best hospital in the country.....you CAN simply trust them.

p 

 

 

 

 

 

 

 

 

CivilMatt's picture
CivilMatt
Posts: 2966
Joined: May 2012

tgcap,

I had a mouth piece made at the same time as my mask, so no, I could not bring an outside mouth piece.  Additionally, every rad treatment I had to put in 4 dental rolls, one on each side, top and bottom, in-between the mouth and gum.  I cannot remember what their exact purpose was, but my mouth sores were not bad and my teeth are still good at 17 months post (and I hope they stay that way).

Don’t fret too much about not being prepared enough, there is still time to plan and get ready.  You already feel overloaded with information; don’t put too much strain on yourself.

If there is something specific you want to know just ask, if you want the down and dirty, unedited version just ask.  Much like you’ve done tonight.  All the information can seem like too much, but remember very few of us experienced all the misery.  Matter-of-fact I always slept well (except the few nights my mind was racing).

Peace,

Matt

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Matt is my mouth piece..., Tongue Out LOL..., just teasing...

Like Phrannie said, a few of us had the Amifostine... It can be nasty to some.. I made it through 32 of the 35 I was supposed to get before I started having really high fevers... 102.7 actually. But as soon as I stopped the injections, no more fevers and I finished my last three rads sessions.

Injections, yes for me I had injections, they were in the stomach around the belly button. The would leave a welt the size or a quarter, and itch. So the would pick a different spot each day.

As Phrannie says they are primarily to help prevent the choking thick phlegm and mucous, which on me I never had. As a side effect they are supposed to also help regaining salivary function. On that I'm not sure, I know people that struggled with saliva that have had them, and others that also regained just as much saliva as before Tx.

For myself, I can only endorse the Amifostine..., I never had the mucous issues, and I regained around 95% of my saliva.., but it did take a good 6 - 12 months probably. I also regained all of my taste, the majority withn the first 6 - 12 months, but not totally for two years..., sweet and ice cream taking the longest, LOL.

As for the mouth piece... Inever had one, nor was offered, and I have a mouthful of fillings, and a few crowns and root canals also. A few post Tx, many before Tx. So for me, it didn't seem to be an issue.

One thing I highly endorse is the use of Flouride after (or during) treatment. My dentist gave me OralB STOP. Others use trays, but it's pretty much a daily thing for 6 - 12 months if not continual. I confess I only use it about every week or so now after four plus years post Tx.

You'll make it through, we all have, you can also...

Read up on the SuperThread, there is a ton of great info on there...

I need to clean it up and get rid of a few dead links though...

Best,

John

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Each time I went for rads, there was this small foam block on a wood stick that I was to bite down on. The mask had a hole around the mouth so the stick could stick through. I was told this was to protect the teeth from the direct rads.

You are pretty early in the process so you'll have time to get up to speed as things move along.

don

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Take a large note pad with you for questions and answers , dates , times etc. I also recomend a dailey journal. I wish that I would have kept one to refur back to for dates of surgeries , scans and ect . You will do fine if I could do this anyone can. My best to you and your Husband.

Peggy

mls351w
Posts: 88
Joined: Jul 2011

Personally, I would recommend the Amifostine. I think it worked for me. No mucus at all and my saliva was back to normal within a few months. I too had issues with it towards the end of treatment. After 35 injections, I would vomit it up. So, my rad onc stopped it. She said I had probably built up enough to get me through the last 5 rads. My belly looked like I had the measles. But the injections were painless.

If your insurance pays for it, why not. I mention this because I found out that the injections were $1500.00 each. That was seven years ago.

Mouthpiece? What mouthpiece made will shield radiation unless its made of lead. I had a mouth thing that was a huge wad of wax with a tongue depressor sticking through a hole in my mask. It was supposed to keep my tongue held firmly in place for precise radiation beams. I really hated it. It was the worse part of radiation treatment.

I used floride treatments before, during, and after treatment and still use them. I really stress good dental hygiene. My routine is as follows.

After every meal. Brush teeth. Brush tongue. Non-alcoholic mouth wash. Floss. Flouride treatment before bedtime with trays using Colgate Prevident GEL. I still follow this routine. I visit a dentist that specializes in treating people who have had head and neck radiation. I now see him 3 times a year, down from 4 times a year.

There!! More info (opinions) to digest.

Best to you and yours.

Mark S.

phrannie51's picture
phrannie51
Posts: 3731
Joined: Mar 2012

is ask for it.  I don't think MD Anderson offers amifostine....many Dr.'s feel that it's hard on patients who are already going through a grueling treatment.  That the benefits don't outweigh the "sick" amifostine applies to a person every day. 

I got mine through an infusion.....I made it for 34 out 35 rad treatments.....I skipped the last one because I thought that would be the prefect ending to add to the last day of radiation...NO AMIFOSTINE!!! Laughing 

p

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network