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#97605 06-18-2009 03:36 PM
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EzJim Offline OP
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Well, the Drs office called from Allegheny General today and I was told who it was. I asked her if it's that time and she said Dr Chess thinks we had better do it . He wanted me to get blood work but I had blood work Monday for my Cardiologist and he will accept a fax of that. Then I will find out tomorrow when I will go to Canonsburg Hospital for A CatScan. Then we go from there. Any volunteers handy? I already have this experience and maybe someone else would like experience too!!! I will keep updating as I learn what's going on and when. One more notch in my belt and this is it until I hit that 100 yrs. As long as I live thru it, I will be fine.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #97616 06-18-2009 04:16 PM
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As always, I wish you the best of luck with all that you must go thru. Hurry up and finish up all your loose ends this year. Next year its OUR year smile.

Stay well!!!!


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
EzJim #97617 06-18-2009 04:18 PM
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We're all pulling for you, Jim, just like you pull for everyone in here. We know you will keep us updated. God bless!


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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Good luck Jim...you can and will do it.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
EzJim #97623 06-18-2009 06:06 PM
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Thinking of you Jim!! Hang in there!!


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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Jim, you are one tough guy. May you sail through this next phase and not have another surgery for the rest of your 100+ years.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
mhupe #97628 06-18-2009 06:25 PM
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Jim:
Good luck! I'm be saying lots of prayers for you!!!!
Sandyst


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter

SandySt. #97633 06-18-2009 08:14 PM
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Jim,
when I think of you get this image of an energizer bunny wearing a timex!

Best wishes

M



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #97638 06-18-2009 09:51 PM
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Give 'em what-for, Jim!
And good Luck - I'll be praying for you.
Marlene


Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
Marlene41 #97643 06-18-2009 11:34 PM
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Best of luck!


GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
mgmichael #97644 06-19-2009 12:02 AM
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You know your angels will be with you - whereever you go! You won't need luck - you have us! (But good luck anyway smile )

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)
mgmichael #97660 06-19-2009 05:56 AM
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It's time for what surgery. I can't keep up with all the things they do to you!! lol


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.
davidcpa #97666 06-19-2009 06:59 AM
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I'm with David -- is this more on the aneurysm? Whatever it is, I know you will come through great!! Go get 'em!


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
JeffL #97671 06-19-2009 09:44 AM
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Jim,

Good luck I'll be praying for you!

Last edited by wfc; 06-19-2009 09:45 AM.

Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
mgmichael #97672 06-19-2009 10:30 AM
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You go kick butt, Jim.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #97673 06-19-2009 10:33 AM
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Best of luck and lots of prayers going out to you.


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
suemarie #97699 06-19-2009 07:23 PM
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Yep, it's aneurysm repair time. I get the CatScan next Friday and then we go from there, If a stent is out of the question, then it's cut em open time once again. Man I hate the thoughts of it happening for the 3rd time.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
mgmichael #97713 06-19-2009 09:24 PM
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You go Jim...You are a really good support person for everyone here. Go get them!!!!!!!!!!!!!
Pat


Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
Pat_451 #97733 06-20-2009 03:56 AM
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Jim, you are my hero buddy, happy father's day too. I pray all goes good and this is taken care of. I can't express to you the gratitude I have for you and how your posts have helped me on my own journey. You've always put things in a manner I can relate to. You are my hero, I even got you an outfit with a cape...just let me know where to ship it?

Love ya man

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #97739 06-20-2009 06:12 AM
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Definitely sending ((vibes)) and thoughts for the best !! I have only been back on the board for a week and your huge presence here is truly noted, needed and appreciated! smile


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.
deni #97766 06-20-2009 05:38 PM
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EzJim Offline OP
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Awe gosh ya all. You have me blusin big time here. LOL Seriously , I would like to thank you all for the great support you give me. That's what makes me tough.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #97810 06-21-2009 04:46 PM
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Best of luck Jim from another of your Angels.
Am having an operation myself tomorrow 23rd (Brian's Birthday).
Don't think it is OC related however part of it is the removal of a large cyst in the pelvic area which they will test during the op.
Will be in for around 5 days and home for 4 to 6 weeks (no driving or lifting) so will have plenty of time to catch up on the forum then smirk
Love from
Angel Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

EzJim #97813 06-21-2009 05:07 PM
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I'm new here, but see you lending support and good advice to everyone throughout the forum. I'm sending positive energy and prayers for a speedy recovery. Hope to see you back on here soon!


Caregiver for Husband, Dana, age 52
DX 11/08, SCC right tonsil, Stage 3
RND, right tonsilectomy, Peg tube installed 12/08
Cisplatin X3, IMRT X35, last TX 3/09
CT scan 5/09 clear
PEG removed 8/27/09
1st PET scan clear 9/10/09
Minor surgery to repair PEG site 9/17/09


Dianeox #97814 06-21-2009 05:49 PM
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Jim, sending good thoughts and prayer your way. Hope all goes well.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #97841 06-21-2009 09:19 PM
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Good luck Jim and more good luck for Gabriele :-)

Tizz


End of Radiation - the "Ides of March" 2004 :-)
EzJim #97874 06-22-2009 12:26 PM
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Jim, you deserve all the positive support and kind words you're reading! We all have benefitted from your support, advice, humor and caring. I'm keeping you in my prayers that your surgery will be smooth sailing and the last surgery for at least the next 50 years or so!!! Gabe, I'm also sending prayers and best wishes your way during your upcoming surgery. Both of you 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.
Nancy T #97911 06-22-2009 06:32 PM
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Hi there Jim,

I hope everything goes extremely well for this next challenge that you have ahead of you. Sending you lots of positive thoughts for a quick and speedy recovery.

((hugs))xx


Gabrielle, hope your surgery and recovery is also quick and you are back up and around soon. Take care and best wishes


Karen



46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Karen Rose #97915 06-22-2009 06:42 PM
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EzJim Offline OP
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The only thing I can think of to say is Thank you one and all. Good luck and a speedy recovery Gabe.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #98201 06-26-2009 05:32 PM
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I have never seen so much confusion over one procedure as I did this CatScan.Yesterday they remembered I am allergic to IVP DYE and called me to cancel it, Heck we just needed a prep kit to go with the barrium. I told the nurse I could get the prpep kit and whateverelse she needed to keep it a go for today, Well we made it trhu and got he green lite for the Scan. I took all 15 of the pills I needed and 2 capsules were at the ready. I drank half of thr barrium and just couldn't cut the sitting around wating for 1 PM so I called the radiology dept to see if it would hurt anything if I pushed the hand mower. LOL Then it happened,. I was told I was informed to be there at 8:30 AM and not to drink the barrium. LOL I said hold on here lady, who was supposed to tell me this stuff? She stuttered a little and of course she was innocent. She called me back after she talked to the DR and said finsih the prep pills but throw away the barrium and get here as fast as you can make it. Showered, shaved, and brushed my tongue and made it there in about 35 minutes. I have never got into a scan or anything that fast. After the girl pulled the IV out of my arm the blood shot across the room and all. One of the nurses started to wipe my pants off LOL , I told her damn that feels good. wipe some more and she started to laugh with the other 2 of us. I told her that these monthlys can be a pain in the ass. LOL I told them, I couldn't pass that one up. Actually it was a fun time there at 10 AM. At least I left the room in laughter.But had to sit for about 15 minutes from the afteraffects. Then had to get some coffee and wait at the exit to feel good enough to drive, That stuff almost killed me a couple of times before.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #98221 06-26-2009 10:08 PM
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Good Lord man. You never do things easily do you? Too funny - I'm sure you made their day with your humour. Glad to hear you got the test done and made is home safely. What is next on the agenda?

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)
EzJim #98223 06-26-2009 10:27 PM
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Unbelievable!

Hang in there!
Marlene


Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
Pandora99 #98227 06-27-2009 12:06 AM
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Jim,
guote ...you deserve all the positive support and kind words you're reading! We all have benefitted from your support, advice, humor and caring.

Hey what was said! thanks for welcoming me back and thanks MORE FOR REMIDIng me 2laughin tears beat crying tears Every Day!!


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.
deni #98236 06-27-2009 06:54 AM
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Jim,
quote ...you deserve all the positive support and kind words you're reading! We all have benefitted from your support, advice, humor and caring.

Ditto and yes what was said! thanks for welcoming me back and thanks MORE FOR REMINDIng me that laughin tears beat crying tears Every Day!!


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.
deni #98237 06-27-2009 07:19 AM
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Hi Jim,

Sorry I'm just reading this..I've been out of the loop for a little while. I'm sorry to hear you have to go through this again. I know you can do it!! I'll be thinking about you.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Pandora99 #98254 06-27-2009 12:41 PM
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Next is the word from the Dr at Allegheny General in Pittsburgh as to if he can stent or have to lay what's inside outside by my body on the table. Your body gets shut down for this procedure. Then staple me back together and wheel me to Intensive care for a day or two. Hard to believe this is the 3rd time for this. I'm going to write a book titled, " The Survivor of Survivors "


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #98863 07-06-2009 01:01 PM
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WOW!!! What a book that would be. We could use some good reading material grin Sorry, I've been out of the loop lately. Mom's back in the hospital. You hang in there and git'er'done. We'll be praying for smooth sailing all the way.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
Pandora99 #99172 07-10-2009 04:56 AM
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After all the trouble we went thru to get the Scan on time, I have heard nothing. I called the Drs office in Pittsburgh to ask why and was told the rssults haven't shown yet in their fax. I called the hospital tha did the Scan and was transfered to 4 people and the last one tod me " I will fax it now" GRRRRRRRR Of course I had to have my say about job effieceny. I asked her just what in the world was your mind doing over a week ago when we did this and your were supposed to fax the results then?? The only answer I got was that The Dr at Allegheny General would have them in a few minutes now. Bust butts between me and the nurse at Allegheny so someone could sleep on the job. OH BOY


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #99200 07-10-2009 10:49 AM
Joined: Jul 2007
Posts: 939
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2007
Posts: 939
Seems to be the exception rather than the norm lately to have someone pay attention to detail and get the job done.

I am so tired of babysitting people..repeating what I have so diligently tried to communicate in the first place...stressing out about getting things done in a timely manner only to have an idiot screw something up.

Sorry to vent and add to Jim's frustration...it has been a bad couple of weeks with this sort of thing in our lives as well.

Stopping now to try to be thankful for Bill's good health and all that is right with our lives.

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
debandbill #99222 07-10-2009 05:22 PM
Joined: Jun 2007
Posts: 5,260
EzJim Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Vent on mam, vent on. The medical profession can tee one off big time. This really is a first for me tho.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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