13 rads and not doing well

jackflash22

I,ve done 13 rads so far on both sides of my throat and base of tongue. I feel dreadful, I,m queezy with the mucus. I have a lump either on thr base of my tongue or throat which acts when I swallow like a finger down my throat and I wretch. my swallowing is going again and I choke. my mucus if I was slug would stretch to the bottom of the garden. when I talk it sounds as if my mouth is full and I can blow a bubble. I don,t want to eat and drink everything taste awful and sickly sweet. Ijust want a big hole to jump into but my partner said he would jump in with me because he doesn't,t want to be left behind.  I,m lying on my bed typing this with the queeziest tum ever. I just drank an ensure and a glass of water. your the only ones I can talk to that understand. Everyone says you,ll get over it I know that but it doesn't,t help at present. All I keep thinking is I have 17 more and will get worse. I,m so tired I sleep every time I sit down to watch TV or read a book. not asking for sympathy you,ve all been through it, just wanted to have a moan...........

 

jim and i

You deserve some sympathy too

I am the caretaker of Jim so I haven't experienced it but I sure witnessed it. I never once said "It will get better." Jim slept a lot as well. Don't fight it, your body needs all that rest to fight the cancer and heal. I believe your doctor can prescribe a suction device for the excess mucous. I am sure someone here knows about that and other things to help with the mucous. I wish we had taken stock in PUFFS tissue as Jim used about a box every two days. They were the softest for his mouth. I pray you find comfort and rest, the strength to follow through, and most of all, healing.

Debbie

jackflash22

jim and i said:

You deserve some sympathy too

I am the caretaker of Jim so I haven't experienced it but I sure witnessed it. I never once said "It will get better." Jim slept a lot as well. Don't fight it, your body needs all that rest to fight the cancer and heal. I believe your doctor can prescribe a suction device for the excess mucous. I am sure someone here knows about that and other things to help with the mucous. I wish we had taken stock in PUFFS tissue as Jim used about a box every two days. They were the softest for his mouth. I pray you find comfort and rest, the strength to follow through, and most of all, healing.

Debbie

Tissues

Thank you, Debbie. I too go through rolls of toilet tissue instead of tissues,  I gettheultra soft kind and keep unrolling it till I,m satisfied I,ve cleaned my mouth. it,s funny when I,m asleep I don't get too much bother, but as soon as I wake up and move about the invasion starts. I don't like talking as then my mouth dries up and my teeth stick to my lips, I,m on a no win situation too wet or too dry, I have burns down the side of my tongue. my fault I guess I didn't,t get my teeth removed before rad and I have metalic fillings

hwt

jackflash22 said:

Tissues

Thank you, Debbie. I too go through rolls of toilet tissue instead of tissues,  I gettheultra soft kind and keep unrolling it till I,m satisfied I,ve cleaned my mouth. it,s funny when I,m asleep I don't get too much bother, but as soon as I wake up and move about the invasion starts. I don't like talking as then my mouth dries up and my teeth stick to my lips, I,m on a no win situation too wet or too dry, I have burns down the side of my tongue. my fault I guess I didn't,t get my teeth removed before rad and I have metalic fillings

Sorry to hear

Very sorry to hear that you are having such a tough go of it. I did not have the all same issues but about mid-tx I found that I felt best while sleeping too. I gave in and slept soundly about 20 hours a day. I forced myself to get up periodically to eat and take a brief walk.  To this day, when my mouth gets that dry, I find that magic mouthwash helps. You will cross this hurdle but I know it's not easy. Stay strong!

Candi

robswife87

hwt said:

Sorry to hear

Very sorry to hear that you are having such a tough go of it. I did not have the all same issues but about mid-tx I found that I felt best while sleeping too. I gave in and slept soundly about 20 hours a day. I forced myself to get up periodically to eat and take a brief walk.  To this day, when my mouth gets that dry, I find that magic mouthwash helps. You will cross this hurdle but I know it's not easy. Stay strong!

Candi

Hang in there

Rob had so much mucus. He carried a small trash can around everywhere he went. He spit and spit. 

If you can get some L=glutamine and mix it in water it does help thin the mucus. At least that is what Rob said. 

Sleep all you can. Rob did not leave the house for over a month during this. 

Can't wait to get a new love seat. He laid on that for 3 months, sweat and all. 

Try to find some positives to think of when this is over and you feel well. A well deserved trip somewhere when you feel good.

If you don't want to talk then don't and let your partner help with anything you need, if only an ear to listen.

Love and prayers to you

Sandy

p.s. are you able to get Mugard over there? It is a life (mouth) saver

debbiejeanne

jf, i'm so sorry ur tx is so

jf, i'm so sorry ur tx is so rough already.  i pray it won't get too much worse. u r alowed to groan, u can even have a "poor me" pitty party now and then.  tx is very tough and u have to b strong to get thru it.  i know u r strong enuf.  sleep everytime ur body says it is tired.  u need the rest so ur body can recoop.  hang in there and come here to groan as often as u need to.  we will all b here and we'll b praying for u to have strength and staminia to get thru this!!

dj

phrannie51

I'm so sorry this is hitting you so

hard, so early in treatment.  The sensation that you have a lump on your tongue is common....I don't know if it really is a bump, or it simply feels like a lump....I just remember a lot of people talking about that.

Someone mentioned the machine for sucking mucous....that is something to look into.  I also remember people saying that ginger ale and club soda busting up the mucous.  Rob swore by L-glutamine powder mixed with water for busting it up (you can get that at a health food store). 

Tell you Dr.s about the nausea....there are many drugs out there they can prescribe to ease that.  Go ahead and sleep....rads cause fatigue, and body healing occurs during sleep....so don't feel like you should stay awake. 

You're almost to the half way point (I embraced that milestone with open arms).....you'll be on your way to single digits and over.

p

PS...have you used your tube yet?

jackflash22

hwt said:

Sorry to hear

Very sorry to hear that you are having such a tough go of it. I did not have the all same issues but about mid-tx I found that I felt best while sleeping too. I gave in and slept soundly about 20 hours a day. I forced myself to get up periodically to eat and take a brief walk.  To this day, when my mouth gets that dry, I find that magic mouthwash helps. You will cross this hurdle but I know it's not easy. Stay strong!

Candi

magic mouthwash

what brand is magic mouthwash I,ve seen some different brands on Amazon. I'm in UK so we dont get stuff the same as you do. My doc  has given me dry mouth toothpaste and mouthwash and a dry mouth gel, the gel works for quite a while on a dry mouth but makes me gag as its like hair gel on your tongue.

CivilMatt

keep fighting

Jackflash,

Sounds like you got the real deal (in spades).  Very sorry about that.

I always had a pitcher of the water, salt and soda at the ready for swish and spit.  It gives you a temporary clean and a little moisture. 

You just have to develop a mind set to do things automatically (by rote).  Every little bit helps.  You should be after small victories.  Whatever combinations of items work for you to make this mess manageable.

For me it was the magic mouth wash for my mouth, tongue and throat.   I lived on the stuff.

You have to develop your own procedure for every waking moment to get through.  Ask for help, take meds, sleep, etc. 

Do not forget to swallow and stay hydrated.

Best always,

Matt

jackflash22

phrannie51 said:

I'm so sorry this is hitting you so

hard, so early in treatment.  The sensation that you have a lump on your tongue is common....I don't know if it really is a bump, or it simply feels like a lump....I just remember a lot of people talking about that.

Someone mentioned the machine for sucking mucous....that is something to look into.  I also remember people saying that ginger ale and club soda busting up the mucous.  Rob swore by L-glutamine powder mixed with water for busting it up (you can get that at a health food store). 

Tell you Dr.s about the nausea....there are many drugs out there they can prescribe to ease that.  Go ahead and sleep....rads cause fatigue, and body healing occurs during sleep....so don't feel like you should stay awake. 

You're almost to the half way point (I embraced that milestone with open arms).....you'll be on your way to single digits and over.

p

PS...have you used your tube yet?

PEG

I have, I'm afraid to say (I know you were so much stronger) It was a case of starving as I was choking with the radiaton damage to my tongue and airway or using the tube. I still force myself to swallow liquid each day. The speech therapist saw me this week and said the radiation had caused my BoT to scar up thats why its difficult to swallow without gagging. It feels like a boiled candy in my throat, she said to go ahead with the tube and try to swallow several times a day. I find it brilliant for medication I have liquid painkiller. I can't wait to put on the board 'last day' several of the h&n patients are on their last week or last day, how I envy them.

phrannie51

jackflash22 said:

PEG

I have, I'm afraid to say (I know you were so much stronger) It was a case of starving as I was choking with the radiaton damage to my tongue and airway or using the tube. I still force myself to swallow liquid each day. The speech therapist saw me this week and said the radiation had caused my BoT to scar up thats why its difficult to swallow without gagging. It feels like a boiled candy in my throat, she said to go ahead with the tube and try to swallow several times a day. I find it brilliant for medication I have liquid painkiller. I can't wait to put on the board 'last day' several of the h&n patients are on their last week or last day, how I envy them.

JF....nobody was stronger...

It's just a matter of the cards dealt.  I got lucky during rads that I had very little in the way of pain....and no mucous (due to the amiphostine I got daily before rads)....however once I started the 5FU chemo, I used my tube exclusively for food and 98% of my hydration...the only thing I could get into my mouth was L-glutamine mixed with water. 

p 

TracyLynn72

I'm so sorry

that the side effects are getting you so badly.  I had them pretty harsh (and early) too.  I almost didn't finish the treatments, I felt so horrible.  Try to sip water each day.  Just a little, but often.  Take the meds for pain and feeling queasy.  I used my tube to everything and only sipped water by the end of my treatments.  Getting the nutrients in through the tube made me feel much better.  Hopefully your doctors can give you something for your mouth sores and to keep you from feeling so sick.  Prayers for you!! 

fisrpotpe

along

like that moan, keep it going! with keeping the moan out of the hole keep the fluids going, even if it is sips keep the sips going many times any hour. you do not want to loose the auto swallow mussel. 

keep the moans coming as a post here. 

john 

SASH

jackflash22 said:

magic mouthwash

what brand is magic mouthwash I,ve seen some different brands on Amazon. I'm in UK so we dont get stuff the same as you do. My doc  has given me dry mouth toothpaste and mouthwash and a dry mouth gel, the gel works for quite a while on a dry mouth but makes me gag as its like hair gel on your tongue.

Magic Mouthwash

Magic Mouthwash is a prescription to help numb what ever it touches to help with the pain of swallowing.  There were days all I could get down was a glass of Gatorade.  Just because radiation ends, doesn't mean it stops working, so don't expect things to get back to normal the day after treatment ends.  It does get better over time, you just have to allow the treatments to work.

dunedintech

Counting down the days

Jackflash - very sorry to hear what you are enduring. As Matt suggested the bicarb rinse may help. I was doing it up to 10 times a day. I would not get too worried about the talking part. My caregivers enjoyed it when I was quiet. Playing catch up now!  I was similiar in the fact I got hit hard early but then plateaued out once I worked out the best methods of handling it. Are you able to get the Oral Lotion Aid prescribed? It is a Lignocaine mix. It helped soothe the tongue for a period. Stay strong. You are slowly but surely counting the days down.

weekend@bernies

base of tongue cancer

I rec'vd 34 rad treats in 2012 for base of tongue.  Of all the help for my pain and swallowing I think "magic mouthwash" was best at giving

me some relief from pain of trying to swallow.  I could eat for first 12 or 13 treats and "boom" next day it was like it all changed overnite.

No taste, no appetite and no energy.  Started to lose weight rapidly; dropped 20 lbs immediately.  Since I knew those consequences, I asked

for peg and it was "installed" several days later.  My weight stabilized and completed rads in Sep 2012.  Radiation doesn't stop giving immediately.

Your body is still "hot" and will go through many side effects you weren't counting on so don't be alarmed as you begin to "cool down".  One day

food may taste good and then you can't taste anything.  It comes and goes though and one year I can taste most days about75-80 percent.

I have had to deal with lymphedema in my neck as I had 25 lymph nodes dissected with my 3rd surgery.  That I wasn't prepared for but I

have to manage constantly.  Presently in lymphedema therapy to control swelling in neck and throat.  Not always pleasant but withk the Lords]

help and "will power" I will survive.  Wish you all the best and hope I have helped you to know what next.  You can do this. Don't give up!  Never

give up!

donfoo

fatigue

The feeling you get being SO tired yet can not even lay there and watch a TV  sow, rather just ball up and sleep. Then wake up and use all your energy to roll over then fall back asleeep. That is fatgue. Anything less does not qualify and once you been there you know how feeble you become.

As long as you can feel relief bundled up, take as much comfort as you can. At the same time it works against you doing the three things: remember?

HYDRATION -- NUTRITION -- PAIN MANAGEMENT. 

This is where your partner can help the most. Just being like a robot set to make you drink (oral) , eat something (via PEG), and keep the pain away. 

Do this and you will get through for sure. don

jackflash22

donfoo said:

fatigue

The feeling you get being SO tired yet can not even lay there and watch a TV  sow, rather just ball up and sleep. Then wake up and use all your energy to roll over then fall back asleeep. That is fatgue. Anything less does not qualify and once you been there you know how feeble you become.

As long as you can feel relief bundled up, take as much comfort as you can. At the same time it works against you doing the three things: remember?

HYDRATION -- NUTRITION -- PAIN MANAGEMENT. 

This is where your partner can help the most. Just being like a robot set to make you drink (oral) , eat something (via PEG), and keep the pain away. 

Do this and you will get through for sure. don

Thanks

Thanks Donfoo, I have just been told off by my nutrition nurse that I,m not eating enough. I know you say hydration_etc but I feel so sick all the time.I,ve been issued with a food pump and endless ensure-plus drinks and anti sickness meds. Maybe I can use it overnight while asleep, some people do. I can just about swallow still but everything comes up again. 

i also have just found out my partner has pulmonary  fibrosis he has a CT scan on the 21st this month. I don't know much about this disease except his lungs are like a sponge and are scarring. I,m praying its very early stages I, found him twice this month clinging to the table hardly getting his breathe. He,s smoked most of his life.

debbiejeanne

jackflash22 said:

Thanks

Thanks Donfoo, I have just been told off by my nutrition nurse that I,m not eating enough. I know you say hydration_etc but I feel so sick all the time.I,ve been issued with a food pump and endless ensure-plus drinks and anti sickness meds. Maybe I can use it overnight while asleep, some people do. I can just about swallow still but everything comes up again. 

i also have just found out my partner has pulmonary  fibrosis he has a CT scan on the 21st this month. I don't know much about this disease except his lungs are like a sponge and are scarring. I,m praying its very early stages I, found him twice this month clinging to the table hardly getting his breathe. He,s smoked most of his life.

jf, including ur hubby n my

jf, including ur hubby n my prayers!  God bless u both.

dj

donfoo

jackflash22 said:

Thanks

Thanks Donfoo, I have just been told off by my nutrition nurse that I,m not eating enough. I know you say hydration_etc but I feel so sick all the time.I,ve been issued with a food pump and endless ensure-plus drinks and anti sickness meds. Maybe I can use it overnight while asleep, some people do. I can just about swallow still but everything comes up again. 

i also have just found out my partner has pulmonary  fibrosis he has a CT scan on the 21st this month. I don't know much about this disease except his lungs are like a sponge and are scarring. I,m praying its very early stages I, found him twice this month clinging to the table hardly getting his breathe. He,s smoked most of his life.

keep at it

Jackie,

Sorry to hear about the nausea and vomit. I was very lucky to have all the meds to keep it totally under cohtrol. Ask about emend, I believe it is one of the better ones and somewhat expensive but it does seem to work for many.

It is hard to stay hydrated but you have to drink enough fluids or you will end up in hospital. I ended up there once and wised up. What I did was ask for IV saline fluids each week. I was getting saline early in the week during chemo and went in on Friday for another liter to help get more into my system. Plus it makes you feel better! Hang in there, don

Hummingbird3

jackflash22 said:

Thanks

Thanks Donfoo, I have just been told off by my nutrition nurse that I,m not eating enough. I know you say hydration_etc but I feel so sick all the time.I,ve been issued with a food pump and endless ensure-plus drinks and anti sickness meds. Maybe I can use it overnight while asleep, some people do. I can just about swallow still but everything comes up again. 

i also have just found out my partner has pulmonary  fibrosis he has a CT scan on the 21st this month. I don't know much about this disease except his lungs are like a sponge and are scarring. I,m praying its very early stages I, found him twice this month clinging to the table hardly getting his breathe. He,s smoked most of his life.

So am sorry your having a

So am sorry your having a tough time.  You sound like a fighter though girl.  I'm lifting you upwee sure hope the cards turn for you and things begin to treat you kind :-)

praying,

Christie