#44475 01-27-2005 02:20 PM | Joined: Oct 2003 Posts: 89 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Oct 2003 Posts: 89 | Hi,
The GOOD news is that your mother has finished with radiation! That means while she may may feel awful and have no appetite today, she will be feeling better slowly over the following weeks and months.
Also, are the doctors and medical staff worried with her nutrition intake? They are the ones with the experience and knowledge about how patients deal with this. One possibility is that to a healthy person her intake may seem low, or may be very different from her previous levels.
A year ago, at the end of radiation, I consumed only a few cans of Ensure or Boost a day. Sometimes I would have a yogurt or a glass of soy milk. Your mom is right - food doesn't taste good and is hard to eat. But her job now is to eat and get healthy. I kept a little note book and wrote down what I ate, as well as when I took medicines. I continued to lose weight for 3 months after radiation - see why so many use feeding tubes. I had a nose tube for a few weeks after surgery. Not fun, but I fed myself. In many ways it is easier than eating.
Soft mushy foods are best. I ate a lot of whipped cream, also ice cream - although its cold for a radiated mouth and throat. I thinned down mashed potatoes with chiken broth or lots of butter. Pureed or cream soups are good. (Cook onions in butter, add a can of chiken broth and cook a frozen pack of broccoli in it. Blend it and add milk if wanted for a creamy soup).
And let her complain a bit without having to feel like you need to solve the problem. It sucks, and is no fun - a bit of self-pity at not being able to eat your favorite foods is ok!
Tell her IT WILL GET BETTER - hang in there!
michelle
History of leukoplakia <2001-2004. SCC lateral tongue 9/03; left radical neck dissection & hemiglosectomy 10/03, T2-3,N0M0; 28 IMRT radiation completed 12/03. 30 HBO dives Oct-Nov 04 for infections and bone necrosis -mandible.
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#44476 01-27-2005 04:04 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | If you think about it, a person that has had the PEG can really speak about it from both sides of the fence. I know what it felt like to try and eat with my throat tore up the way it was and that was very early in my radiation treatment. I also know how simple it was to keep my nutrition where it needed to be with the PEG. So, we PEG users really do offer a unique opinion as we have been on both sides.
I'm with you Helen, I could not tolerate the drip feeding. I did everything bolus with a syringe and did it as fast as I could, I was impatient with it, lol.
To PEG or Not To PEG...........that is the question. Either way all of us should be admired for what we dealt with.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#44477 01-27-2005 06:04 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hey I vote Republican in a town that seems is entirely union Democrats I'm used to minority odds.
I don't believe I said anything nearly as biased as the comments like "PEG the only way to fly" or "see your doctor and immediatly insist on a PEG" or Your doctor must be stupid or what ever.
It seems to me that this person is already able to eat, and has a doctor that has some idea of what is going on. I don't think we need to jump all over a new poster with such comments. My posts were rather carefully worded not to bring the WRATH OF PEG down on myself and it still happened! Crap, next time I am not going to hold back.
By the way there is a 2% mortality rate directly related to the procedure of PEG tube installation.
Glenn I thought you had my back...I counted on you man.
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.
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#44478 01-27-2005 06:20 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | THE WRATH OF PEG.........Mark, you crack me up. I believe you may have coined us a new phrase.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#44479 01-27-2005 06:38 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Don't take it personal Mark... you are one of the most knowledgeable, compassionate, and consistent posters on this board. And as such you have my admiration and support, you don't need Glenn. Besides, I know you. You can trade it, or stand toe to toe with the best of them. I didn't say that you took any extreme view, just that your no peg argument was frequently in the minority position, which you acknowledge. My comments were not a personal attack, just an observation. You are, it seems, a minority when it comes to the peg, but your perspective certainly offers balance to the rest of the posts. And Glenn doesn't count if he takes your side.... he truly is a real world tough guy. I don't think I'd mess with him in a dark alley....
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#44480 01-28-2005 01:36 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Don't need Glenn? Nice Brian.
Mark, do the math. Minnie has about a third of the posts on this thread. All I could do was watch, remember the October exchange? In fact, everyone makes the PEG sound so cool, I'm thinking of getting one myself. I'm on solids for well over 2 years but I figure if I had a PEG I wouldn't have to worry about talking with my mouth full. Anyway, I'm about to snap on another issue here!
Glenn | | |
#44481 01-28-2005 07:08 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Anybody hear any good jokes lately? Nice to see
some healthy debate on "To Peg or Not To Peg"
AGAIN!!!
We may all have had oral cancer but I think each case is different. Treatment is going to vary based on many factors as Brian has noted. Lets all play nice and not judge others due to their opinions and experiences. Take what you want from this open forum and leave what you don't believe.
Danny Boy
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
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#44482 01-28-2005 08:15 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Minnie,
That was intended as a joke. I felt that there was humor in the fact that you and I got into it so bad last time. I wrongly assumed that you would remember and get a laugh. Additionally, I thought we had cleared that up. I read the October post wrong and said I was sorry. I am posting this so everyone understands the fact that I was not taking a shot at you. I have never found the need to make you feel stupid on this forum. Again, If I inadvertently offended you in any way, I am sorry.
That said, on the value of my posts. This is not an issue for this thread, nor is it a subject that warrants any further discussion. With few exceptions, I will put the value, content, responsiveness and brevity of my posts pretty high up on the scale. My humor can be dry and is frequently misunderstood by some people. Again, for that I am sorry. Do not question the value of my posts, it is a debate you will certainly lose. I have publicly responded to your public accusation that I post for entertainment value alone. If you feel the need to discuss this further please email me.
Glenn | | |
#44483 01-28-2005 09:42 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I just can't stand not getting in on the WRATH OF PEG or NOT TO PEG!!  I believe I may be the only truly qualified person that can speak on both sides of the PEG. I had a PEG and when I used it, I usually puked up everything about as soon as I was done. It worked good for meds and fluids but ultimately I had to use TPN feedings and 3 bags of fluids a day for months to maintain hydration and nutrition. Looking with the knowledge I have, would I get a PEG or not? Absolutley I would do it again. It came in hand often and when I did use it, there were no alternatives available. Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#44484 01-28-2005 01:22 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I questioned the two posts you had on this thread Glenn. They offered nothing to the person posting for help. Usually you add something to a thread, albeit sometimes your humor escapes me. Nowhere in my post can it be mistaken that I was questioning ALL of your postings. That noted, I honestly wasn't able to see that you were making a joke. It takes alot to make me mad but it's over with quick. I had barely left the computer before I regreted posting at all. It's not a big deal Glenn. For future postings...........could you send me an email warning me when you are making a joke and my sense of humor is not in tune enough to recognize it?? :p
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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