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#20900 08-20-2006 02:08 PM
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thank you all for such good information. i'm so thankful that an oncology nurse gave me the info for this webiste. i do have a great support system, i'm a very active member in my community i just recieved the superintendent's community award for our school district only 5 people recieved the award in our whole district. and everybody is trying to help out. it's just hard for me, i've always have been the one to give not really recieve. but it's been such a blessing. im going to set a time for both my husband and i to get on this site for tx info. but what is PEG? i feel alot more at ease since i have read all your information.. again thanks please keep in touch


marie
#20901 08-20-2006 02:26 PM
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Hi Marie,
Cancer is tough enough without having to deal with it during the "busiest" time in a womans life...........which is when she is raising her children. With you being so young, I imagine your children are also pretty young. I had a 9, 11 and 12 year old still at home (I was 41) and I had two grandaughters, 3 and 4 when I was going through treatment. I am here to tell you that it's hard but very, very doable..........and you will get through it just fine. You'll be tired and there will be days that the tiredness will require naps, especially during the last couple weeks of treatment and the first couple of weeks after treatment. Your neck will get burned but it won't halt your life. It's sore but doesn't get in the way of day to day life. I had a peg tube and used it as my sole source of nutrition from about my third week of treatment. I didn't try to eat, it hurt and the food tasted horrible. The PEG made life easier, and easier is what I needed at that time. I would suggest getting one. I did laundry, took the kids to their activities, did my housework. I would take a nap after treatment after I got into about my 5th week, and would take another nap later in the day. That is also when I started taking pain meds that also helped me sleep. I guess what I'm trying to say is that it's no fun, but if you put your mind to it, you can continue to manage your house and your family.
Keep us posted and ask questions. When you feel scared, go outside and take a deep breath of fresh air, then come back to this site and read about all the MANY survivors!


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.
#20902 08-20-2006 02:34 PM
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Hi Marie,

Welcome to the forum, there's great information here. You sound like you have a wonderful attitude and that will help you. A PEG tube is a catheter that is surgically inserted into your stomach that you put liquid food and water into. My husband had one for 7 months and just had it removed. He is convinced that it was a life saver during his radiation/chemo treatments.

Most people have the PEG tube inserted as a precaution and probably 90% use them. There will come a time when you are unable to swallow due to the treatments and the PEG tube allows you to maintain an adequate amount of nutrition and hydration. You will find a lot of information on this site about them.

Ask the radiologist or surgeon about what's involved in getting a PEG tube. If they say you don't need one ask them how they will ensure that you can maintain an appropriate level of nutrition and hydration when you are at the peak of side effects.

It's like an insurance policy - if you don't need it great, but if you do you don't want to wait too long to get it.

Best wishes to you during your treatments.
Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#20903 08-20-2006 08:28 PM
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Without igniting the PEG vs. No PEG debate, I just want to note that even more important to me when my mouth and throat were just too messed up (technical term) to swallow, was that I was able to get pain and other meds easily via the PEG. My experience ws entirely positive. No pain, no leak no smell, and I just tucked the end into my bra when not in use and went about my business. The only thing I am embarrassed about during my treatment was what a complete and total wimp I was about getting a PEG. A prime example of worry being a total waste of time and energy.

#20904 08-21-2006 03:28 PM
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Many of you may deem this information totally irrelevant, but I'm posting it anyway. A couple of weeks ago, while sitting with John for his Erbitux infusion, I saw the book "Uplift" by Barbara Delinsky on the magazine rack outside his chemo cubicle. Because I have 2 friends, miles away, that are breast cancer survivors , I asked if I could check the book out for a few weeks. It is a great read for any type of cancer patient or caregiver. It speaks to the most positive and proactive attitudes that survivors need, and it made me realize that no matter what kind of cancer one is diagnosed with, the battle to beat it is the same. [Since this book is specifically about breast cancer, it might appeal to the women more.] Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#20905 08-21-2006 08:37 PM
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thank you all so much. i talker with my husband today about the PEG and we both agreed that if it is going to help me eat i must ask about it. and believe me before this forum i was dead against having a feeding tube. but thanks to you all and reading i see that if i want to aleast try to keep up with my 4 yr old their are sacrifices i must make.... and hey i could stad to lose a few pounds. i go wed to rad and their calling me tomorrow to set up my chemo appt. today was kinda hard now i'm feeling a;most the same symptoms on my left side. no lump but pain like a migraine only on the left side of my face and neck... so again thank you all and god bless you all

Marie


marie
#20906 08-22-2006 01:03 AM
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Welcome to the board Marie. Just wanted to let you know my husband was 37 when diagnosed with stage IV tonsil cancer and like you we have three children. I know it is a scary place you are in right now, but thought it might help for you to know that he had his six year check up last May and all is going great now. So, hang in there and don't give up hope.


Julie
Wife to Kelly
SSC tonsil Stage IV
July 2000
#20907 08-22-2006 03:05 AM
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Julie -

I can't speak for Marie but I can tell you that your message sure makes me feel a little better. I wish more people who are 5+ years out would kindly remind us newbies that even stage IV disease is curable!

Thanks -

Mike


Follow my experience at http://mycancerfight.blogspot.com/

Diagnosed 6/28/06 with SCC of the base of tongue. T1N2bM0. Modified radical neck dissection 7/19/06. 35 x Tomotherapy IMRT began 8/15/06. 8 x adjuvant Erbitux. UPDATE: 10/4/11 - Checkup on my 5 year anniversary and I am cancer free!
#20908 08-22-2006 04:28 AM
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Mike, I am four years and 3 months out from diagnosis date, Stage IV and very happy about it! Keep up the good fight!
Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#20909 08-22-2006 08:53 AM
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Great to hear Carol. Thank you! Did you go to Hopkins too?


Follow my experience at http://mycancerfight.blogspot.com/

Diagnosed 6/28/06 with SCC of the base of tongue. T1N2bM0. Modified radical neck dissection 7/19/06. 35 x Tomotherapy IMRT began 8/15/06. 8 x adjuvant Erbitux. UPDATE: 10/4/11 - Checkup on my 5 year anniversary and I am cancer free!
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