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#1506 08-08-2003 03:45 PM
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didier Offline OP
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Hi everyone, I hope you are all doing well. I apologize I only post when I have questions. I have so much to learn. I hope I am able to offer advice as helpful as the information that I have received from all of you.

My Mom just finished her second week of radiation, and over the past couple of days she has found it painful to eat and drink (she says everything burns when she puts it in her mouth). She has pain medication, but that doesn't seem to be doing the trick. Short of getting a tube inserted, can anyone suggest something that may help make it easier to tollerate getting nutrition?

Thank you.
D


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
#1507 08-08-2003 04:46 PM
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Hello, Didier. This is not what you want to hear, but if at two weeks she cannot eat/drink easily, how do you/she think she will handle the next 5? I am a strong proponent of the PEG because even after the radiation is finished, there are mouth sores that hang around. That said, there are people who did it without a PEG, and I am sure you will hear good suggestions from them. Be sure to tell your mom that there are lots and lots of people who got through what she is going through who are happy and doing just fine now. It sometimes is easy to forget because when going to radiation, all one sees is sick people.
Joanna

#1508 08-08-2003 05:25 PM
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Hi D,
yeah I'm one of those guys who didn't get the PEG tube but that doesn't mean I don't recommend it. I think most people on this site SHOULD get a PEG tube. I would talk to the doctor immediately about all of her pain management options. Don't delay. Dehydration can set in very fast.

My radiation effects continued for a good three weeks post treatment and got worse to boot. You must take that into consideration also. I could tell you all of the meds I took but everyone is a little different and the doctors have an ethical responsibility to manage it.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#1509 08-09-2003 01:27 AM
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After reading all the pros and cons of the peg tube I asked for one prior to my surgery. The reasons vary but I felt all the warnings about not being able to eat or drink in the quanity I would need was the biggest one. Also I am a small man 5,7", 145 normally. I couldn't afford to lose much weight, I relied on the experience of those who walked this path before me.


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#1510 08-09-2003 03:46 AM
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You have perhaps read that I did not need a PEG. I did have significant pain and it seemed worst at about the second or third week. The radiation also takes away the urge to eat to some extent and distorts the sense of taste. This is in addition to the pain. I lost 30 pounds and I was not overweight when I started.

My suggestion is that anyone going through radiation needs to be really determined to eat and drink as much as possible, at every moment think about eating and drinking. If at any time you physically cannot eat or drink or mentally can't get up to it, then it is time to get help.

Frankly the pain meds given me to help with eating didn't work very well. She should avoid salty, peppery, or pickled foods. Also tomato based food was tough for me. I had to use a blender to make everything liquid. I have not found any food that can't be chewed up by a blender. Eating became an almost around the clock thing. It would take a long time to eat anything but I did it.

E-mail me if you want some blender ideas.

Take care


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#1511 08-09-2003 03:57 AM
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My husband used xylocaine viscous every time he drank anything and still does since april it gets pricey but he refused to get a tube
hope something works for your mom Diane

#1512 08-09-2003 05:45 AM
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didier Offline OP
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Thanks for the info. I am pushing for the PEG as she really hasn't been eating for the last two days, and she hasn't eaten anything so far today.
Argh. To add to the frustration, my siblings carry on with their lives as if my Mom isn't even sick. One of my brothers hasn't even called her all week and the other is more concerned about his social life. Thank God for this forum. Without it I wouldn't have much support. Thanks everyone. Sorry for venting.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
#1513 08-09-2003 06:19 AM
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D,
I'll add a few things to Mark's list that I couldn't eat. Any fruit - not even cantelope, fruit juices unless extremely diluted (because of the acidity). Mark was absolutely right about having to making eating and drinking a highly focused priority (An extreme challenge when one is sick as a dog from combination radiation and chemotherapy). I never realized just how hard it was to take in JUST the 2-3 liters of water a day to avoid dehydration (Did I mention that I had to be rehydrated twice in the hospital - once in emergency) when you can only take small sips (that's a LOT of small sips), let alone all of the calories required. That's about 4-6 cans of Boost or Insure every day (I couldn't stand either one of those so I lived on Carnation Instant Breakfast and coffee flavored milkshakes - strangely enough it was the ONLY taste bud that still worked). All the while in pain, fatigued, sleeping all the time, none to horrible taste, mucositus, etc. I never got to the point of even trying blended drinks because I struggled so much with just the Carnation Instant Breakfast. We were given a brand new blender and it still sits unused. It's only through the natural will to survive and the grace of God that I got through it.

I am smaller than Dan, 5'6", was a little heavier going into it, about 170 (and in great shape going into this) and got down to 109 lbs (I can't even REMEMBER when I weighed 109 -4th grade maybe? I would look in the mirror and see someone who looks like a Nazi death camp survivor). I am still wearing some of my wife's jeans and she is a size "0". My t-shirt size has gone from large to small -Hey Brian can I trade some of my t-shirts (just kidding, I plan on growing back into them).

Almost 5 months post radiation, putting the weight back on has been very challenging, and I suspect that my consistently low WBC is a result of poor nutrition. And my appetite, taste buds and swallowing are great now.

There were times it would take an hour or more just to get up the courage to swallow the pain pills (little tiny morphine pills) for the breakthrough pain involved in swallowing (now there's a paradox).

The "pink magic -topical lidocaine & morphine" would make me vomit most of the time (but I would still get about 10-15 minutes of "swallowing time").

Thrush was also a major problem for me and greatly exacerbated any and all swallowing issues and pain. I still take a maintenance dose of Diflucan.

There were a few times that I actually thought I would die. Would I get a PEG tube knowing what I know now? You bet (grin -for you Joanna ;-). It would have made my management (yes I needed to be "managed" - I can admit that now) a lot easier on my long suffering wife, my only caregiver.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#1514 08-09-2003 07:41 AM
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I think the PEG tube just takes some pressure off. My husband resisted until the last two weeks of radiation/chemo. He is 6'2" and got down to 115 lbs, even though he was eating as much as he could round the clock - getting up in the middle of the night and making milkshakes, etc. He just had his PEG tube taken out a couple of days ago (at about 4 1/2 months post treatment). There is so much to deal with during and after radiation that anything to make things easier is worth it. I have to admit that I became the "diet police" even when he was on the PEG...he needed alot of urging to get enough calories.

Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#1515 08-09-2003 08:36 AM
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Anita, your "diet police" reference made me laugh out loud. That is the hat my husband wore because I simply didn't care if I ate or not. He would plug food into my PEG while I slept.

Others have mentioned it, Didier, but we patients can often come to just not care about eating, which is bad, bad, bad. Even worse is when we don't get enough water, which is much more than a couple of sips a day. Dehydration is very serious and can come on suddenly. And about your siblings, it may be that they cannot mentally and emotionally acknowledge that their (your) mom is not always going to be there. It is more than wonderful that you are available to help and worry about your mother. Vent away, as we all understand the stresses that a serious illness brings.
Joanna

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