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**New REPOSTING for Postie a/k/a Brenda**

Ingrid K's picture
Ingrid K
Posts: 809
Joined: Mar 2011

Hi there, I have been reading all your posts and soaking in the infor. I am a Canadian girl, 47, with stage 2 Squamous Cell Carcinoma of the tongue. I am going for rad #10 of 30 today and have had one round of Cisplatin of 3 treatments. Round 2 is on Feb 19th 2013. I can't believe how much my mouth changed overnight as far as pain. A day or two ago I was telling everyone how great I was feeling and this morning I woke up at 4 a.m. coughing and choking with dry mouth and pain. It feels like if I try and lift my tongue the skin underneath will tear. I cant imagine the kind of pain I am in for by the end of week 6. Please tell me that I won't choke to death in my sleep :( I have consulted a Natuopathic Doctor along with my regular Docs and the L-glutamine was suggested to me too. Of course I didn't start using it till yesterday, because up until now I've been great. I hope I didn't screw things up by waiting. I know with radiation everything gets worse days after treatments, so I should have been smarter and done some preventative care. Anyway, I enjoy reading the tips from everyone and because you are all still posting, I'm assuming that I too will survive this crap. Oh yeh, I can relate to the food tasting like crap...I am in love with food, and this taste thing is like the ultimate curse to me. Again, I'm only into week 3 of 6 and already I feel doomed :( I will keep reading and hope for the best. Brenda

longtermsurvivor's picture

Posts: 1334
Joined: Mar 2010

A sudden increase in mouth symptoms, while on chemo and rads, often means oral thrush. You should get them to look at your mouth today or tomorrow, as this is a common, and very treatable problem. Most of us get at least one episode during treatment. This is an old thread we are posting on, dead for a couple of years. When you post it is suggested you start a nex thread, otherwise lots of potential helpers will miss your message. Welcome to the board. Keep coming back.

 

Pat

postie65's picture

Posts: 6
Joined: Feb 2013

I don't know how to do what you asked me to with this old page and I was wondering why all the posts are so old. Can you tell me what to do? lol The canadian Cancer society doesn't even have a blog that I can find, so i was glad to join this one.

phrannie51's picture

Posts: 1857
Joined: Mar 2012

on the left side just under the "Search" thingee, you see "Post New Forum Topic"....click that and you will have your own thread going. You'll get a lot of responses.

I used L-glutamine when my mouth sores got really bad from the 5FU chemo....during the radiation part of treatments I used MuGard, which is basically a preventative (it really worked for me)....Mouth sores were absolutely the MOST miserable part of treatment....I cried on here for days on end. I could at least put L-glutamine and water into my mouth without the stinging, which also kept me hydrated. I also got thrush at the same time....Diflucon cured it fast.

p

postie65's picture

Posts: 6
Joined: Feb 2013

Not sure why but I hav elooke and there is no search line and there is no where that says "post new forum topic"...I swear I have looked and paged thru from the main page and have looked everywhere. But I am happy that people can at least see me and read my stuff. I will keep looking thru the pages tho. Thanks for the response tho :)

postie65's picture

Posts: 6
Joined: Feb 2013

Not sure why but I have looked and there is no search line and there is no where that says "post new forum topic"...I swear I have looked and paged thru from the main page and have looked everywhere. But I am happy that people can at least see me and read my stuff. I will keep looking thru the pages tho. Thanks for the response tho :)

Skiffin16's picture

Posts: 6138
Joined: Sep 2009

Most everything I can think of regarding mouth pain has been covered... Of course always check an communicate with your MD's, they might have something new.

I never had mouth issues and was very lucky compared to many. I did have pain from the rads, lost all taste and saliva for many weeks.

Eventually after a month or so, I did have very slow improvement... After just a few months, I definitely could survive on what taste I had gotten back along with limited saliva... After two years I completely had all taste return and around 95% of the saliva...life is good...

You too will more than likely have most taste and saliva return..., unfortuantely it's never as fast as we would like...

Best ~ John

postie65's picture

Posts: 6
Joined: Feb 2013

I've been reading all of the posts, and on my tablet I was actually on the page that had the current ones. For some reason this old site is the only one i have access to on my CU and I can't seem to find where the new ones are. Anyway, you guys have all given me great tips thru this crappy jouney :)

Ingrid K's picture
Ingrid K
Posts: 809
Joined: Mar 2011

Hope this works.  Just reposted for a new member.

it deserved it's own space.

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

were you able to just put the whole thread on your clipboard and repost it all?

 

Pat

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Yep, LOL...IK used the old copy and paste with a new Title...

Good job Ingrid...

Postie, I sent you an email describng it, as well as Phrannie's reply..., hope you figure this posting thing out...

Best ~ John

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Brenda,

 

Welcome to the H&N forum.  It is almost like Ingrid let you in the back door (how cool is that).  Or judging from your picture how cold is that? 

 

I did have sore mouth, tongue and throat, sores and all, but never had the pleasure of meeting MR, Thrush.  I was a big fan of  Magic Mouth Wash for discomfort relief and Lidocaine.

 

I would hope your body adjusts to the treatment and you get somewhat more comfortable.  It is terrible to feel like you can not breathe.  For me that was the last week or two of rads when wearing the mask, I always had to take a Lorazapam for anxiety.

 

It is best to stay in front of the side effects, but it is better late (treatment) than never.

 

You will love food again.

 

Matt

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

Thanks to everyone who realizes that the Canadian girl has no idea how to do computering! lol I needed a chuckle this morning because last night I was very low and had a weepy evening. i was feeling sorry for myself and there was nothing anyone could do to change it. i've barely scratched the surface of lies ahead of me And I already feel like I can't do it. I love to eat and I'm already sick of not being able to eat whatever I want. It took me over an hour to sip down a mini smoothie yesterday. This morning I'm up trying to re-wet my whistle because my throat is so dry from the night that I keep coughing and choking on water...what will it be like after week 6? I feel lilke I'm failing this test miserably :( My hubby tries to keepme positive, but the way I was last night, I think he thinks I've given up too. Like I said to a friend this morning...if someone had offered me a pill that would make me never wake up again, I would have had a hard time not taking it last night. hopefully today will be better. Thanks for all the CU advice too guys ;)

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

a test to see if you can limit yourself to living one day at a time.  I know this sounds trite, but it helps.  Don't worry about tomorrow, just do today.  One step after the other, and the time will pass.  I think most of us reach the point where swallowing is hard.  I know it was for me.  Tough to get things to go the rightt way, and a lot wanted to come backwards out my nose.  Calories are important.  Fluids are important.  What I ended up doing is taking in my calories and a lot of my fluids in five or six sessions per day, at the kitchen sink.  I actually set out everything in advance so I ccould have a "session" geared to getting in enough calories/fluids to get me by.  I also figured out how to position my neck/tongue such that I could do the best possible to get things to go down.   Then rather than sip, I just chugged things down. Granted some came back the wrong way, but since I was already at the sink and prepared for this, it was no big deal.  Most sessions  limited to 8-10 ounces at a time, but I could force them down in a coupleof minutes.  And I could get in 300-600 calories per session as well.  Honestly, if you are havingg trouble drinking, and also are short on calories, drinking free water makes no  sense.  Everyghing should be fluid plus calories. 

 

No need to give up.  You can do this. Be as proactive as possible, not reactive.  And take it one day at a time.

 

best

 

Pat

 

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

Thanks Pat for the help. Today is a bit more positive and I have been able to take in calories too. got a sample pack of Boost and Ensure to try so will be taking these to. My hubby tells me the same thing...it doesn't have to taste good, just try to get it down.

I've been trying to live one day at a time...telling myself that today is only a bit worse than yesterday, and trying to tell myself that tomorrow will only be a tiny bit worse than today...which is do-able. Last night everything just got away on me and I felt overwhelmed and unable to see just today.

I'm scared of choking on phlem and food. I'm scared of being so nauseous that I  am unable to finish my radiation. Having my head bolted in to that face mask during radiation has been okay up till now ,but i have been having alot of phlem and have had to stop and sit up and slear it out before going on. I'm scared one day I won't be able to. So just thinking about today sounds like a good way to not worry about this. Thanks for the pat on the back..pat :)

Ingrid K's picture
Ingrid K
Posts: 809
Joined: Mar 2011

Yup, that's all I did.... your old "copy and paste"... highly technical, LOL

I honestly didn't think it would work.

I just thought the post would get lost and Postie could use some good advice right now.

 

You are actually doing very very good this early in your treatment journey.   Don't get discouraged.  This is a slow process.  It will test your patience.  Just keep plodding along...there is a light at the end of the tunnel.

And don't hesitate to post all your questions/concerns...chances are that someone on here has been thru the same symptom at one time or another.

 

 

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

hello there, Sorry I haven't been online for a while. I ended up in the hospital from Feb 25 to the 28th because I let my nausea get out of control, I was dehydrated and constipated...that liquid morphine really does a number in the bowels. I feel good now, and they tell me I'm doing well to still be eating...well, soups and cream of wheat and tea and cottage cheese. That's pretty much what I am surviving on right now. I will never be able to look at another bowl of cream of wheat as long as I live, but I'm glad to have it right now and that it tastes like it should (a rare occurance right now). My throat is very scratchy and feels like it's the size of a pea, and I usually get a tickle and start coughing till I gag, but it does't last that long. I can whisper, and I can swallow my liquid meds...I guess that's all that counts. On tuesday the 12th I have my last chemo and wednesday I have my last rad.(they were supposed to be done' on the same day but they skipped my rad on the day I was admitted to the hospital) I will sure be happy to be done and start the healing. I was told the week after rads is often worse than the last week but AS LONG AS i'm prepared I guess i will be able to handle it. If anyone has any tidbits of wisdom to share i am always open to advice. take care everyone.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Actually it sounds like you are pretty well informed and prepared..

Yes on the rads, you are still cooking for a week or three after the rads have ended. Just recovery starts pretty slow, one step forward, two back...or something to that nature. Measured in weeks and months more so that days and weeks.

But as you said, you are done, let the healing begin...

Best ~ John

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

You're seeing the light at the end of the tunnel!!  Yup, the 2 or 3 weeks after radiation is done can be trying but at least you know you're on the downhill of treatment, and every week brings improvements (slight at first, but they DO get momentum as the time passes).  AND, you don't have to drag yourself into radiation everyday......I hated that! 

You have a real "can-do" attitude, and that is half the battle....

p

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

I was kind of hoping the docs were exaggerating whenthey said the two weeks after would be worse. That scares me. I can barely stand it now. 4 more rads...I will just have to suck it up I guess. Thanks for the words of encouragement tho.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

LOL..., doesn't necessarily mean it'll be worse..., just not better.

Most people think that as soon as the rads are done, healing begins... But in reality the damage is still going on for a little while.. Don't get wrapped around the wheel on it, you'll do fine.

JG

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

I guess I already knew that but I feel better being informed. Although the old"everyone is different" might be repetative...I know its true. One dsy at a time...I know. Im just thankful Imalmost done. 

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Brenda,

 

Join the club, I once had to stop everything (just as the techs were settling in) during rad treatments.  As for all of us I had my own procedure I followed, but one time after being strapped down I felt like I could not breathe and had to abort.  After a brief de-masking, drink of water, gargle, swish and spit, I was again fastened in for my daily ride and I could and did breathe.

 

That is why Matt takes one Lorazapam before rad treatments and scans of any kind which put me in a tube.  If it wasn’t for H&N cancer I may never known what an anxiety attack was (lucky me).

 

You are not alone in your stress; we’ve all been there at some point along the journey.

 

Matt

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Nice new photo of the family IK, even Barney my main man (K9) is in there...

We need a new pinned thread under the SuperThread called something like;

What Would Matt Do

or maybe

ASK MATT

maybe

MATT on MATT

LOL...

JG

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