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Mark is right, none of us are doctors. But we all have information and opinions to share and this is not the first time we have questioned a doctors decision.
What makes this forum so valuable is that you can get information from both sides of an issue. You can gain knowledge to question your doctors if needed. Many on here have gone through misery because of an unskilled doctor.
We may not be doctors but I can promise you that there are doctors out there that are making mistakes with oral cancer patients.
There is no arguing here, that only happens when we are trying to convince the "other" side that we are right. I'm not trying to do that, I'm trying to tell Sara's daughter my opinion and what I would do if this were my own mom.
Mark, you make valid points and I have learned alot from you.


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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Sarah's Daughter,

Welcome to the neighborhood! I am really sorry to hear of your mother's challenges and I know how difficult it must be for you and the entire family. She sounds like a very strong-willed and determined lady and I am glad to hear she has endured the chemo and radiation. Those both are very tough on the mind and body, especially radiation to the neck and what it does to the throat and mouth. Be sure and congratulate your mother from all of us who know from experience how tough a road she has already traveled.

Your situation is so difficult because of your mother's age and the "toughness" that people of her generation grew up with. I have a relative that age that has only been to the doctor twice in their life because they didn't want to bother the doctor who already had so many patients that were much worse off. That is just something that one must be sensitive to when we look at what we want to do versus what they want to do. I once read in the Wall Street Journal a full-page ad that started out..."You can lead a horse to water, but you can't manage it do drink." As much as you want to help your mother, in the end, her wishes are the most important.

As difficult as this seems, it is somewhat easier (and more manageable) to sit down and discuss with her exactly what she wants out of this. She is at absolutely the worst part of the treatment from both a physical and a mental perspective. Encourage her or read some posts to her from people who know this from experience or have been by the side of someone going through this. Acknowledge how rough we know it is right now. Get her to communicate what she wants. Obviously, the loopiness of pain meds is a fear everyone has and it sounds like your dad also is worried about it. There are alternatives. The Duragesic patch, for example, is intended to release doses of pain meds over time and you change it every 3 days. My personal experience is that life was much clearer while the pain was controlled quite well. The meds she is on right now are intended to hit quick so she takes it every 4 hours. This would cause her to be in somewhat of a daze all the time. Morphine, oxycontin, etc., make me very loopy and I do not like them for that reason. While on the patch, I could drive, work, reason and generally function fine once the body gets used to the dosage. I upped it until the pain was barely noticeable and as it decreases over 3 days, you can taper off gradually or even keep the patch on more than 3 (5 or so) and it has the same effect of decreasing the dose without withdrawal effects. Studies have shown that few cancer patients experience addiction when the drug is given for intense pain.

I would suggest sitting down with your mother and making a list of everything that is concerning her right now. Try to pick one thing out of the list that will give her the most satisfaction if it dealt with. Stay with it until it is resolved. The list will grow shorter and soon be very small.

Get your mother on some type of home health care. They will send a nurse, aides, etc., have access to doctors directly for pain management and generally bring the care to the home. That is what they are designed to do and especially so far from the doctor, it will work better than running to the doctor 3 hours away.

Break the tasks to do into smaller pieces and it won't seem like such an overwhelming amount of stuff to deal with. Nutrition and hydration are of the utmost importance. Nutrition is needed for the body to heal and dehydration will make all the side effects of chemo and radiation much worse than they need to be.

As far as the tube thing, if she doens't want it, that is pretty much her decision until the doctors have to convince her she will not live without nutrition. There are ways to help without the tube, provided her nutrition is managed properly.

Hang in there. You have a big load on your shoulders trying to help your mother see what is best for her. She is so fortunate to have you helping her and learning all you can to help her more and better. Ask in questions but take only the size bite you can chew comfortably. Take time for yourself so you can be all you want to be for her.

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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Any doctor that has his head on straight is not going to let the patient make the final decision about the PEG tube. At MDACC once you loose 10% of your body weight, you are going to get a PEG and that is not up for discussion. Nutrition and hydration are vital to recovery and if she is not getting them, her health could be further compromised and she could be open to serious consequences. People on this board have gone into physical shock and worse from lack of hydration and imbalances that it causes. Your body need nutrition to rebuild and to fight off all the opportunistic things that will want to take hold while in and also after the treatment. I didn't want the tube, and didn't like the whole idea, after getting it I realized it was no big deal to get it put in, and I certainly would have never made it through things without it. I ended up on it for almost 14 months.


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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Thanks so much to everyone for your kind and helpful replies.

My mother's doctor's appointment is next Monday and I've printed everything out for consultation with the doctors.

On a good note, my mother has actually been pretty cheerful the past two days and trying to eat. She was able to eat an egg the day before last, though one egg isn't going to sustain her, it's a start at least.

Also, I printed off several posts from this site on the day I made my original posts and gave them to my mother to read. She said they really helped her and made her realize that there is a light at the end of this tunnel. So, on her behalf, I want to thank all of you for this forum and for your wonderful insights.

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Sarah's Daughter, Thank you for that little bit of good news!

Brian, that 10% number can't be universal as I went from 185lbs to 155lbs (about 18%) under the care of both the radiation oncologist and the nutritionist. A tube was never mentioned.


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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Sara's Daughter, that is AWESOME news for your mother. One egg isn't enough, but it's a pretty good start and hopefully she can keep improving with her eating. Let us know how her appointment goes.
Minnie


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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Sarhs Daughter,

Good news that your Mother ate and is in a better mood.

I had a PEG tube in for about 7 months. Never had a problem with it. I gained back the 25 lbs. I lost during treatment.

She needs alot more nutrition right now. Check with a nutritionest on what she needs. I'll bet it's at least 2000 calories per day. She should also be inputting at least two to three large glasses of water per day. Please tell her it does get better!! Recovery is measured in weeks not days. Keep up the great caregiver work you have been doing. Someone has to be her advocate.
Knowledge about this diaease is power.

Best Wishes, 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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Mark-- For as much as I almost always agree with you, I ask you to take a look at this posting again and almost all the PEG postings that are on the board. You are always in the minority when it comes to championing the no PEG position. The fact is that while patient's reactions to treatments vary wildly, and some develop acute mucocitis and swallowing issues, and others do not, loss of body weight is an indicator of something going wrong. That something is that the patient is NOT GETTING THE PROPER NUTRITION.

That someone is a tough guy and deals with the pain and discomfort of trying to get by on minimal food, or that someone's doctor didn't do the obvious, does not appeal to me as an argument that carries much weight. You, as much as any other person, have often said there is no need to go through unnecessary pain during this process. The PEG eliminates part of that pain. You have also been a proponent of getting proper nutrition in many of your posts. For most patients, especially the elderly, and those with little lean body mass to loose, going the no PEG route is not good for them. And while you lost 18% of your body weight which is significant, clearly your treating doctors felt that it was not critical. Likely your young age, physical fitness, plenty of muscle tissue, etc. etc. played a part in their decision. But as a younger, physically fit man, you might consider that your experience is not the most common one, and that your unique strengths made the no PEG decision a doable thing. But the majority of major institutions have weight loss guidelines that they will not go beyond. Once the patient's nutritional intake (easily represented by body weight fluctuations) dips too low, they doctors are going to intervene regardless of the patient's desires. Believe me I fought the idea of a PEG with them, but in the end, it no longer was my choice. I suspect that the point at which this becomes a line in the sand, (somewhere between 10 to 20%) is unique to the institution, and factors such as the persons overall health and age, and lean body mass ratios etc. all come into play. But from my own personal experience I look back (with a more knowledgeable eye) and I think, what the hell was I so resistant to? It was the best thing that I did during my treatment. Yeah, it was weird seeing that tube hanging out in front of me, but it enabled me to level off the loss of lean body mass, and provide my body (in the broadest sense from musculature to immune system) to do the best possible job of repair and recovery.


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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I am so glad I stayed out of this one!

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Me?
I had no choice, nil by mouth for 3 weeks, water only for 3 more. So for me PEG no problems, great to stick the meds down, couldn't tolerate constant drip feed, but I did syringe feeds every 4 hours that was fine.
Just my view to add fuel to the fire...
Sunshine...love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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