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Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Best wishes with everything this week!


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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Posts: 1,357
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"OCF Canuck"
Patient Advocate (1000+ posts)
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Thinking of you every day, knowing that you are attacking this with the intense determination that only you can bring to it. Love that you changed the lyrics - they are awesome. Know you and your beautiful wife are in my thoughts and prayers.

Hugs

Donna

(p.s. I played online duplicate bridge the other day with a lady from VA - very close to you! You never know when I will show up in your area for a bridge tournament!!)

Last edited by Pandora99; 09-30-2012 12:55 PM.

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)
Joined: Sep 2012
Posts: 74
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Posts: 74
Perfect song. Thinking of you and wishing you all the best.


mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
Joined: Jul 2009
Posts: 453
"OCF Down Under"
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Posts: 453
In my thoughts Charm xx


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
Joined: Sep 2006
Posts: 1,357
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"OCF Canuck"
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"OCF Canuck"
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Okay Charm - so I see your last post was on Oct 2nd. I am wondering how you are doing but expect you are too busy being dedicated to treatment to post. When you are able, we look forward to an update. Know that we are all sending good vibes and/or prayers,

Hugs to you.

Donna

Last edited by Pandora99; 10-04-2012 05:53 PM.

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)
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Posts: 3,082
Donna

Unfortunately I've been "too busy being dedicated" not to my TX, but to dealing with unexpected bureaucratic complications from turning 65 this month. My insurance as a former federal employee, like many others, makes Medicare my primary insurance automatically while of course still keep charging me my same premiums plus I pay another $1,200 for Part B coverage. Don't get me wrong, it's still a better deal than most all Americans have.
The problem is twofold: (1) paperwork as apparently the default assumption is that between Sept 30th and October 1, I was miraculously cured and (2) I was born on the same day, different year, as my Dad so I have his name but with the traditional Jr. Medicare has my childhood legal name from Social Security but when I started working a half century ago, the computer systems did not have an entry field so there were no suffixes. So now all my medical records need to be "corrected' to show that I am still the same person and not my own son.
My feeding tube supplier has put my orders on hold until they get extensive records from my doctor and the name changes done. This morning I have to fill out new forms before the radiation and chemo in three different places in the hospital to show Medicare is primary . So I'm sending emails, faxes, and making irate phone calls. It didn't help that I had a bad synergistic reaction to Robinul and Zofran and carboplatin that had me doubled up with abdominal pain for two days while dry heaving.
Nothing I can't handle but it's very time consuming. I'm trying to look at it as funny in an existential absurdity way.
Oops, have to run to get to the hospital early to get new orders for blood work with my childhood name
Charm, Jr.


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
Joined: Sep 2012
Posts: 74
Supporting Member (50+ posts)
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Posts: 74
What a nightmare dealing with both insurance companies and bureaucracies! When I read your post, I thought of this song - hope it brings a smile. Karen

"I'm My Own Grandpa"

"Many, many years ago when I was twenty-three
I was married to a widow who was pretty as could be
This widow had a grown-up daughter who had hair of red
My father fell in love with her and soon they too were wed

"This made my dad my son-in-law and really changed my life
For now my daughter was my mother, 'cause she was my father's wife
And to complicate the matter, even though it brought me joy
I soon became the father of a bouncing baby boy

"My little baby then became a brother-in-law to dad
And so became my uncle, though it made me very sad
For if he were my uncle, then that also made him brother
Of the widow's grownup daughter, who was of course my step-mother

"Father's wife then had a son who kept them on the run
And he became my grandchild, for he was my daughter's son
My wife is now my mother's mother and it makes me blue
Because although she is my wife, she's my grandmother too

"Now if my wife is my grandmother, then I'm her grandchild
And every time I think of it, it nearly drives me wild
'Cause now I have become the strangest 'case you ever saw
As husband of my grandmother, I am my own grandpa

"I'm my own grandpa, I'm my own grandpa
It sounds funny, I know but it really is so
I'm my own grandpa"



mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Hey Charm, Jr. - I'm sorry about your reaction to the Robinal and Zofran but hopefully that's better now. Ahhh the paperwork involved! I think every survivor needs a secretary (in addition to a patient advocate) to take care of all the bureaucratic complications! What you've had to deal with does sound like the "I'm My Own Grandpa" song. I remember it well. When you mentioned turning 65 this month, I thought of the Beatles' song, thinking it was "When I'm 65". It's actually "When I'm 64" but if you've already turned 65, I'm sure you don't look a day over 64 so here is a Happy Birthday song for you:
http://www.youtube.com/watch?v=u2CISVP3ov4


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.)



Joined: Oct 2011
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Sheesh Charm. Hope this gets settled soon. I am not the least bit surprised that you are trying to see some humor in this. I would expect no less. That's why we love you!!
Hang in there you two!! Hope your belly is better.
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
Joined: Sep 2006
Posts: 1,357
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"OCF Canuck"
Patient Advocate (1000+ posts)
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So let me get this straight....you are now "Old Frack Jr."??

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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