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Kelly,

Enough already! I'm sure you are thinking the same thing. You are in my thoughts and prayers as you go through yet another round. Enjoy the time with your family and don't forget to update your OCF family! We are here for you.

(((HUGS)))


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Nov 2006
Posts: 2,671
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Sending you good vibes and thinking very positive for you. Very best wishes for everything to go just the way it is supposed to! Do stay close and let us know how you are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Well, I made it through treatment. Unfortunately I did come down with a nasty case of pneumonia on Wed. last and had to spend the next 4 days in the hospital in Pittsburgh. They canceled Wednesday�s chemo but did keep the radiation treatments for Wed. and Friday so I got all my radiation in. Made it home here to Michigan on Sunday and mostly have been laid out on my recliner since.

Allison is worried I will stop breathing in the middle of the night and keeps a close eye on me which I don�t mind given the pneumonia and Charm�s recent brush with breathing problems in the middle of the night. I�m on Oxygen and copious amounts of pain killer for the burns. My neck is red and sensitive but the skin has not broken which is a good thing. I have a cream with lidocain in it that they gave me and that helps. I�ll post again when things change (hopefully for the better).


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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So thrilled to hear from you Kelly. I am so happy that you were able to finish all of your radiation and all but one chemo - that is a mammoth achievement. Well done.

Stay vigilent about breathing problems. I have heard from many people that sleeping in a recliner got them through pneumonia - so I hope yours is very comfy.

We heal while we rest, so I pray that you rest well and heal soon.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Im so glad to hear from you! I was beginning to get concerned that you havent posted in a while.

You are a man with such inner strength and courage! Wishing you all the best with your recovery. You have been down this path before so know what needs to be done to recover. Hang in there and get better very soon!!!


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
Joined: Mar 2008
Posts: 3,082
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Kelly

Glad to hear from you. You have now gone where no oral cancer patient has gone before in terms of radiation. You are young and strong so I know you can make it if an old guy like me is still hanging in there. It is very tough but so are you.
I'm not posting much either as I get used to the anti seizure medication and of course the never ending nausea and moucous..
But our radiation damage beats the alternative.
Just relax and recover brother
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Posts: 805
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Great to hear from you Kelly! I've been wondering how you were. Take care of you and update as you can.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Congrats on getting through it!!!!


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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Kelly,

I'm so sorry I am just hearing of your 4th recurrence. Life is indeed unfair. I am glad that you are finished with your treatments.

When I was diagnosed the first time, I went out and bought a recliner for the occasion because I read that another man had slept in his for months. I did the same with the first round and really needed it the second round.

My husband told me that I was stopping breathing in my sleep and/or that I was snoring incredibly loudly. I would wake up with an inhalation as if a had just held my breath under water for 30 seconds! Once I started sleeping in the recliner again and used a cool mist humidifier, things improved greatly. My husband actually slept on the floor in the living room so he could monitor my breathing. My throat was so swollen from the rads that I could not lay flat without further closing my airway.

I'm wishing you all the best. With my second round, I was too sick to even get on my computer for great lengths of time. My dear husband kept everyone posted via Eric Statler (as far as the boards go).

Be well, my friend!

With much love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Jul 2007
Posts: 939
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Has anyone heard from Kelly? I keep wondering about him and his brother who had cancer as well.

I have had thoughts about him lately and just decided it was time to ask.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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