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#177014 01-28-2014 02:03 PM
Joined: Oct 2013
Posts: 24
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Joined: Oct 2013
Posts: 24
So sorry it's been so long since I've updated. Proud to announce it's all good news though! Guess who is eating normal food, speaking well, and swallowing normally despite the grim outlook we were first given by doctors and speech pathologists??? Miracles still happen and my sister is walking, talking, eating proof! Of course her speech isn't perfect and she sometimes has to repeat herself, but she talks soooo much better than we thought she would. It was less than a month and half after her surgery and she was eating pizza! So far so good with radiation therapy. Today is day 15 of 30 and the side effects are minimal- occasional sore throat and thicker saliva at night time. She is happy that radiation is taking care of the hair that was growing on her flap smile I wish you all the best and thank you for being there for me when I needed it.


Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13
Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only)
Forearm flap reconstruction
Trache and NG feeding tube after surgery (both removed now)
Tumor 6.7 cm
All lymph nodes tested came back negative for cancer
Radiation- 30 treatments (ending 2/18/14)
3/20/14 Recurrence- tumors in both lungs; likely metastasis
RebeccaH. #177017 01-28-2014 07:04 PM
Joined: Jan 2013
Posts: 1,291
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Patient Advocate (1000+ posts)
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Joined: Jan 2013
Posts: 1,291
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Thanks for the update Rebecca. It is always great to hear how members are progressing and it sounds like your sister is doing well. Do remember that radiation is nasty so she may suffer for awhile but will get through it. There are is lots of experience here so make sure to drop in should she suffer side effects.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
RebeccaH. #177018 01-28-2014 07:23 PM
Joined: Dec 2013
Posts: 11
"OCF Canuck"
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Hi Rebecca,
It's amazing! Your sister is doing awesome. Very happy to hear that. My prayers for her continued recovery. Congrats to on making it half way through treatment also. My husband just completed day 17/33 today. This Thursday is 2/3 chemos.
He's doing alright in terms of treatment side effects too, but his mental state is a bit down. He's the bread winner of the home, and the long term effects of his speech and swallowing really worry him. But the fact that your sister is doing so well, provides some hope that I will surely share with him.
When you say your sister eats everything, you mean in pur�ed form? Or softer solids? How does she manage to get food to the back off her mouth to swallow? My husband has not tried any solids yet, but manages to get liquids to the back and then has to tilt his head backwards to take it down. It's still a little messy but we are hopeful it will get better. Was ur sister advised to have any chemo sessions? How are her activity levels during radiation?
He has the same saliva problem, mostly at night also and this prevents him from sleeping much at night. It's really hard and sad to watch.
They still haven't removed his trache or feeding tube.
Please stay in touch when you have time.
God bless your family

RebeccaH. #177022 01-28-2014 09:07 PM
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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So glad she's doing well. It gets harder soon but there is a light at the end of the tunnel. Hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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