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#98865 07-06-2009 12:29 PM
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Nancy T Offline OP
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Well, my mom finished her Erbitux on 6/19 and rad. on 6/23. Did better than expected this time w/both during treatment. This time it was worse afterward. I had been busy getting ready for my daughter's baby shower (Sat.) and parents' 60th wedding anniversary (Sun.) that I hadn't been to see her in a few days. That's all it took. By the time I saw her on 6/27, she was dehydrated - said she hadn't been able to eat/drink much of anything in four days but won't complain or call me frown I was surprised my Dad didn't call either??? Anyway, called dr. and he called in a prescription to help w/throat pain and I got her to drink some water as she really didn't want to go to ER that night. Sun. morning parents went to ER and she got pumped up w/IV fluids and they both attended their anniversary party. Poor thing, she was happy to be there but we had her chair waiting w/tissues, trash can, iced tea and blankets. Everyone came to visit w/her at her chair and we brought the cake to her for them to slice the first slice together. Of course, she only got to look at the cake - had no desire to eat. She was exhausted after that but happy. Monday morning I called the dr. to let him know what was going on and by noon they were calling me to take her to the hospital. She's still there. They gave her fluids but she's not eating worth anything.... still...and FINALLY and GRATEFULLY, they are going to put in a feeding tube tomorrow. I can't believe they've waited so long. We've been talking about it for a week now. I am praying and hoping that once that is in she can start to gain and build up her strength. Still can't believe how good her spirits are after all she's gone through. She's even already started saying she's not going to go through this cancer again without a port and feeding tube - we've all learned the hard way this time around...she's had the hard way. Just wanted to let everybody know how she was doing. Thanks for listening! Take care.

Nancy T.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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Which feeding tube are they putting in? Nasal or stomach?

Watch out for constipation issues due to the dehydration and believe me that can be very painful.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Nancy

best of luck with the surgery tomorrow for the feeding tube. Im so sorry your mom has suffered so much with this. Ive landed myself in the hospital a few times for dehydration. Keep a close eye on that, the hospital can always give her fluids. Its amazing how much better you feel after you get the fluids.

If you need any pointers about the feedings please let me know. Hope this will help her turn things aroung and feel a little better.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Sending postive thoughts that she does well and that this will help build her strength!!


Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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Nancy T Offline OP
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Thanks to all of you for the good wishes! Mom had her feeding tube put in this morning without a hitch. It's in her stomach. They found a couple of ulcers they will work on while they were in there. The hospital gave her the first feeding today (while I was at work) so I'll be curious this evening to find out how it went. A friend was at the hospital when the dr. came around and called to let us know he will let mom come home once she's gotten accustomed to it. I know about the constipation issues from last time she had this cancer...not good. This time the hospital was pouring milk of magnesia down her and ended up having to stop! Don't have anymore details about the feeding tube itself but I'm sure we'll have questions about it as she progresses. I'm just hoping it will make life easier for her - she knows she needs the calories but doesn't have the strength or desire to eat/drink much right now. Once her surgery was done this morning and they wheeled her back into her room, the nurse asked how she was. As my mother proves once again how strong her spirit is, she raised both thumbs in the air... said she was glad it was overwith... and "it's all uphill from here!" I'll second that. She's been through the ringer this time too w/her radiation burns on her neck. When she was still at home the sheet stuck to it one night under her chin and pulled a layer of skin off. Hospital had it looking much better by Saturday a.m. using vaseline bandages. One of the nurses didn't bother to look at the order in the chart and did her own thing Sat. p.m. with the bandages and totally reversed any good that had been done. mad We fussed to charge nurse and everyone else we could find - now she's looking better again but it was so bad to have her suffer through that needlessly. Going to make a formal complaint to hospital about that one. Anyway, hopefully things are starting to look up for her. Thanks and take care!!!

Nancy T


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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Wish you and your mom all the best!! Saying prayers . . . .


Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!

*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker

LETS MAKE ORAL CANCER HISTORY!
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Nancy T Offline OP
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Thanks, Susan. We'll take all we can get!!! Take care.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
Joined: May 2009
Posts: 114
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Same here. Wishing you and mom well!


Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10

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