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Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Charm, I was always the one who was big a tattle tale about the scammers. Brian and Gary are used to me letting them know all about another live one joining OCF to take advantage of us.

I hate it when people try to profit from others when they are down. Here is a way to look at it differently. To me Im happy to read your post. It means there is another active member who is very alert to these unethical people and hates it as much as I do. To me, it means I know you will be on watch while Im recovering so the fakers' posts are very short lived. OCF memebers wont get tricked into any of their bogus advice, thank you!!!! Good job smile




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
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Christine

A "good job" from you means a lot to me. As a guy, I prefer Enforcer to tattle tale, as the latter has negative connotations. Please relax and work on recovery as I assure you that I will be doubly vigilant now on these bad guys & gals.
Glad to be of service. I remain amazed by your cheerful spirit.
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
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
LOL....I think we have a new name for you Charm!! The Enforcer. Christine, I think we will call you the Protector instead of tattle tale. Where do you notice these posts, in what forum? I never see anything.


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:)
Joined: Jul 2009
Posts: 14
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Posts: 14
I want to thank all of you for the chuckles that I got. As a caregiver, I too have gotten many ridiculous comments. One feller with an ego the size of Texas asked me how my husband was and when I told him that he was weak and doing his best to recover, he began to remind me how he had encouraged my husband to go to his feller, a biochemist, blah, blah, blah. And when I told him that we were sticking with Sloan Kettering and would follow doctor's advice as far as chemo and radiation, he had the audicity and stinkiness to reply that "well, that's what some of my family members did and they all died." My stomach goes into knots whenever I recall that recent conversation, and then I remind myself that he's being who he is and how could I expect otherwise.


1/23/09:R tonsil/tumor removed; spouse diagnosed SCC Stage T3N1M1; 2/6/09 PET shows lesions in liver; 3/2/09 Liver biopsy: AJCC Stage IVC; 3/5/09 Begin 3 rounds of Cisplatin Cocktail; 4/9/09 PET of liver: clean; 5/21/09:PEG; 5/26/09: radiation; 7/6/09: Complete 30 rad tx: hospitalized until 7/10/09
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
susanne

Right now we are having a problem in the Adjunctive therapy forum on my Up movie review where a rotten apple keeps posting links to internet DVD sites in her signature line Gary deleted one but then asked me to be "compassionate" about an 'Honest mistake". His kindness and good nature were repaid by the poster immediately putting in a different link to an equally sleazy DVD site. It's active now and will be until California wake up time comes.
The click for pay set up on the Internet rewards people who drive traffic to such sites and the unscrupulous target forums like this. Our "enforcing" and "protecting" really consist of just hitting the notify button on the post and Gary and Brian do all the hard work. When they get tired of being abused, they reluctantly ban the person's IP address.
I try to add some "derogatory" comments in the oft chance that the posters have some shred of conscience left plus a little vitriol seems to make them less likely to become repeat offenders especially the mexican clinic wack jobs who thrive on "dialogue" and "discussion" just like the "birthers". As Georgette's post above this ones proves: sometimes there is nothing to discuss, ignorant is ignorant.

Last edited by Charm2017; 08-15-2009 07:26 AM.

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: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Suzanne, if you read a post that sounds phony and too good to be true, That is one of them.


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
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
I guess it's safe to assume these people have never gone through what we have. That's really not nice that people try to invade our space like that....


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:)
Joined: Jan 2009
Posts: 225
"OCF across the pond"
Gold Member (200+ posts)
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"OCF across the pond"
Gold Member (200+ posts)

Joined: Jan 2009
Posts: 225
[quote=davidcpa]When they give you an EXACT appointment time (I mean like 11:15) and you arrive EXACTLY on time only to wait more than a hour for his holiness to see you.

When you go to get a prescription filled and the lady in the window says "that will be twenty seven fifty" and you hand her $40,00 thinking that's reasonable only to hear her reply "no I mean $2750.00"!! [/quote]

Lucky you only waited 1 hour! We were the second appointment and waited 3 hours then saw his holyness for half an hour, then had to pay $23 in car parking (the hospital car park meant for day patients and visitors of in patients- not a shopping mall car park) because his holyness was 3 hours late.

Where you prescribed liquid gold?


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
Joined: Jan 2009
Posts: 225
"OCF across the pond"
Gold Member (200+ posts)
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"OCF across the pond"
Gold Member (200+ posts)

Joined: Jan 2009
Posts: 225
when minutes after you have come out of the recovery room after a modified radical neck dissection, the consultant asks "Does it hurt?"

Erm no! It's all tickety boo! I was just thinking of doing a few back flips! Derrrr, does it hurt!


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
When I am talking to another teacher about what I was going through last year, and another one comes up butts in and tried to tell the story. This happened today by the way. I was so angry. It doesn't help that I do not get along with teacher anyway and I am her supervisor. LOL


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
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