Scared!! Diagonosed with throat cancer

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RE: Scared!! Diagonosed with throat cancer

by Dlynn1210 on Mon Dec 01, 2014 12:29 PM

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I drank Wendy's chocolate frosties in the beginning but once the mucous build up started, any milk product (and I LOVE milk) just made it much worse.  While there are several weeks of increasing mucous, the good news is that it WILL pass and one day you will hear you are all clear of cancer.

Diana 

RE: Scared!! Diagonosed with throat cancer

by gr0619064 on Tue Dec 02, 2014 06:22 PM

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On Dec 01, 2014 12:54 AM CheyenneMoon wrote:

More details. I am starving! I get formula prescribed by doctor. They are supposed to up the caloric intake this week. I have never lost my appetite. I can only get about 4 cans a day of the peg tube nutrition in me a day. I have only lost 4 pounds so not bad. I can still sip water and will continue as I don't want to lose my swallowing ability. I haven't tried apple sauce or ginger ale. I have apple sauce so might try that. Just seems things kinda burn going down.

Cheyenne

Caroline,Susan and Diana have given you great advice. I know it is hard and frustrating-Hang in there.

I did get as they said prescription food for tube like ensure paid by medical plan. There were days that I would only feel like putting two cans in the tube but I averaged three to four a day. Plus drank as much water as I could. Scambled eggs was all I could eat for weeks day and night just to keep mouth and jaws working. Some things you eat will burn try something else. it is all very mental to keep yourself mentally strong to get through this -your body WILL recover.

gary

RE: Scared!! Diagonosed with throat cancer

by TonsilSurvivor on Wed Dec 03, 2014 04:16 AM

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CheyenneMoon,

I haven't been keeping up with all the posts so forgive me if others have suggested.  Have you tried yogurt?  It is cool and easy to swallow plus the cultures help retard yeast infections in your mouth.  The food sensitivity is weird - one day a banana stung like heck for me.

You are nearing the end.  For me the mucous was worst the last week (of 7) and the week after.  Then it started getting better.  I still had it for 6 months or so after treatment.  Now it is very livable but still more than pre-cancer.

Do stay strong and think long-term (like 3 or 4 months).  My worst days mentally were in the last couple of weeks and the first three or so after treatment.  It will pass.  You will get better.  It will take time to regain strength and stamina.  Some things won't be the same but the magnitude of the side effects lessens and continues to lessen for a longer time than you'd think.

RE: Scared!! Diagonosed with throat cancer

by Hope_ on Wed Dec 03, 2014 05:56 PM

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Hi CheyenneMoon,

I am sorry....I have not been on the boards for months.  I am a caregiver for my husband.  He had the same cancer you do, and it sounds like a similar treatment.  I used to put ice old thickened liquid yogurt in a cup for him.  That helped him a lot.  Bless you for getting through this, as a caregiver who has been on the clean-up crew....I will pray for you.

 

Hope Catherine

RE: Scared!! Diagonosed with throat cancer

by Sdurnell on Thu Dec 04, 2014 08:20 AM

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On Dec 01, 2014 12:54 AM CheyenneMoon wrote:

More details. I am starving! I get formula prescribed by doctor. They are supposed to up the caloric intake this week. I have never lost my appetite. I can only get about 4 cans a day of the peg tube nutrition in me a day. I have only lost 4 pounds so not bad. I can still sip water and will continue as I don't want to lose my swallowing ability. I haven't tried apple sauce or ginger ale. I have apple sauce so might try that. Just seems things kinda burn going down.

Cheyenne,

You are starving because you are not getting enough calories.  Four cans is only about 1000 calories a day if you are using a 1.0 formula, and only about 1400 if it's 1.5.  Upping the calories sounds like the best thing to do.

How are you getting the formula?  Do you bolus (syringe) it in, or do you have a drip on a pole or a pump?  I could bolus water but never the formula, and the drip didn't work for me, so they gave me a pump.  It was easier to feed that way, and I could even get in two cans at night that way;  then I had less to do during the day.  You might investigate that if the new calorie regimen still feels lacking.

When you are swallowing, the best thing will be something you can tolerate the taste of.  Sometimes temperature makes a difference, so if cold doesn't work, try lukewarm.  For me, the ginger ale was fine at room temperature, and even when it was flat.  Changing temperature might help with the burning.

Susan

RE: Scared!! Diagonosed with throat cancer

by gr0619064 on Fri Dec 05, 2014 10:04 AM

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On Dec 04, 2014 8:20 AM Sdurnell wrote:

On Dec 01, 2014 12:54 AM CheyenneMoon wrote:

More details. I am starving! I get formula prescribed by doctor. They are supposed to up the caloric intake this week. I have never lost my appetite. I can only get about 4 cans a day of the peg tube nutrition in me a day. I have only lost 4 pounds so not bad. I can still sip water and will continue as I don't want to lose my swallowing ability. I haven't tried apple sauce or ginger ale. I have apple sauce so might try that. Just seems things kinda burn going down.

Cheyenne,

You are starving because you are not getting enough calories.  Four cans is only about 1000 calories a day if you are using a 1.0 formula, and only about 1400 if it's 1.5.  Upping the calories sounds like the best thing to do.

How are you getting the formula?  Do you bolus (syringe) it in, or do you have a drip on a pole or a pump?  I could bolus water but never the formula, and the drip didn't work for me, so they gave me a pump.  It was easier to feed that way, and I could even get in two cans at night that way;  then I had less to do during the day.  You might investigate that if the new calorie regimen still feels lacking.

When you are swallowing, the best thing will be something you can tolerate the taste of.  Sometimes temperature makes a difference, so if cold doesn't work, try lukewarm.  For me, the ginger ale was fine at room temperature, and even when it was flat.  Changing temperature might help with the burning.

Susan

Hi Cheeyenne

Keeping the weight on is a job. That is what my wife would tell me. That my job is to try and keep weight on. Easier said than done. It did take a lot of effort to get used to the tube but it saved my life. I used syringe to push the prescription liquid through the tube. Yes it is weired but it works I was also able to drink some out of the can. Three cans was all I could tolerate for a while but upped it to four plus I was able to eat soft scrammbled eggs. keep mentally strong-you will make it.

Hi Susan

Gary

RE: Scared!! Diagonosed with throat cancer

by cherdr on Sat Dec 27, 2014 07:27 PM

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On Oct 16, 2014 4:41 PM CheyenneMoon wrote:

Hi Everyone,  I have been diagnosed with throat cancer related to the HPV 16 virus. I have run the gamment of emotions but yesterday took the cake. I went in for my simulation....where the make your mask...total panic attack. Now I am so scared I won't be able to go through with treatment. I felt like I couldnt breath. They gave me adivan to get through the simulation part. Has anyone else had such and experience and if so how did you handle going in for daily radiation treatments. Please....any advice would be greatly appreciated.  I am so afraid I can't get past the panic.

Thanks

I am claustrophobic and also had a hard time with the mask, but I made up my mind I had to do it.  I also had throat cancer, the first time they made a mask I had to go back because I had a panic attack and cryed.  the second time I got through it.  I had 2 separate rounds of radiation, so two masks and 2 separate rounds of treatment.  The treatments are not as bad as the making of the mask, takes very little time.  just tell yourself you are going to do it, because it has to be done for your health and to get rid of the cancer.  you will do fine, as I said the treatments take very little time and are not as bad as making the mask.  Also let them know you are claustrophobic and they will help to get you through.

prayers and Good luck,  Cheryl

RE: Scared!! Diagonosed with throat cancer

by Sdurnell on Mon Dec 29, 2014 04:44 AM

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Cheryl,

It's not really claustrophobia that gets people with the mask.  It's the confinement.  I know because I am very claustrophobic, and was nervous about the mask, but it went well because I could see the whole room and know I was not closed in the whole time (especially after the first week when I could open my left eye as well as my right).  

So to all of you who may be reading this, just because you may suffer from claustrophobia doesn't mean that the mask ordeal will cause anxiety for you.  If you can't open your eyes in the mask, ask them to cut holes for you.  You are not in an enclosed space, but you are confined by the mask.

Susan

RE: Scared!! Diagonosed with throat cancer

by cherdr on Mon Dec 29, 2014 05:29 AM

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On Dec 29, 2014 4:44 AM Sdurnell wrote:

Cheryl,

It's not really claustrophobia that gets people with the mask.  It's the confinement.  I know because I am very claustrophobic, and was nervous about the mask, but it went well because I could see the whole room and know I was not closed in the whole time (especially after the first week when I could open my left eye as well as my right).  

So to all of you who may be reading this, just because you may suffer from claustrophobia doesn't mean that the mask ordeal will cause anxiety for you.  If you can't open your eyes in the mask, ask them to cut holes for you.  You are not in an enclosed space, but you are confined by the mask.

Susan

sorry but I had eyes in the mask and it is because I am claustrophobic that upset me in the mask as it does in elevators, scans etc. Eyes in the mask I had from the beginning and it was still very hard for me. seeing the whole room did not make it easier for me, making up my mind got me through it, but it is hard. So I am sorry but claustrophobia is what got me with the mask.  That is why they ask you if you are claustrophobic before they make the mask and when you take scans etc.

RE: Scared!! Diagonosed with throat cancer

by Dlynn1210 on Mon Dec 29, 2014 09:30 AM

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Claustrophobia(Wikipedia) is the fear of having no escape and being in closed or small spaces or rooms. It is typically classified as an anxiety disorder and often results in a panic attack, and can be the result of many situations or stimuli,   including  elevators crowded to capacity, windowless rooms, and even tight-necked clothing.

I'm totally with Cheryl on this one.  Clausrophobia is the inability to handle confinement.  I also have a difficult time in elevators and problems with scans. 

If you are claustophobic, you are more than likely going to have a problem with the mask.  I had eyes in my mask from the first day and almost didn't make it through my first treatment.  In addition to the mask, you are in what I lovingly called the cement mixer (TOMO radiation machine).  The confinement from a combination of the two were my undoing.  Prior to my second treatment they gave me Ativan and prior to all remaining treatments, I took Ativan an hour before my treatment.  It was still difficult but I made it through.  My Dad was also claustrophobic and I made it through by repeating to myself over and over "my Dad would never make it - my Dad would never make it - my Dad would never make it!" 

I don't see how anyone who is truly claustophobic could make it through without a problem.  It is better to ask for and receive a mild sedative before beginning if you are claustophobic. 

Diana  

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