| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Ah, yet another reason I'm glad I am a Facebook objector. I can get into quite enough trouble right here on OCF.  But keeping this thread right on point ( after 28 pages and over 16 thousand views), here is an excerpt from the OCF News feed on the Esquire article on film critic Robert Ebert that deals with how he was treated at a reception or rather how he was patronized. [quote]they don't know even half of what it's taken him just to get into the room, just to be here tonight, but there's something sad about the wet-eyed recognition, too. He's confronted by elegies everywhere he goes. People take longer to say goodbye to him than they used to. They fuss over him, and they linger around him, and they talk slowly to him. One woman at the party even writes him a note in his notepad, and Ebert has to point to his ears and roll his eyes. He would love nothing more than to be holding court in a corner of the room, telling stories about Lee Marvin and Robert Mitchum and Russ Meyer (who came to the Eberts' wedding accompanied by Melissa Mounds). Instead he's propped on a chair in the middle of the room like a swami, smiling and nodding and trying not to flinch when people pat him on the shoulder.[/quote] Don't you just hate it when people talk sloooww to you now, like you had brain cancer instead of oral cancer? Or like it was your ears and not your tongue, tonsil or jaw that had the cancer? Yeah, we may eat slow (or not at all) or talk slow but we still think at the same speed. 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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | eric, i was definately not offended by any of YOUR comments. i was offended by MR vetters, it wasnt his place to question liz's response to roy. he doesnt have a clue. i showed andy the whole "book" and we both got a huge laugh out of it.
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | when....you see the Doctor and are busy spending the week celebrating an "all clear for now", and within ONE WEEK you find a new lump/bump in your neck. You are then forced to either live with it until the next appointment (mid April) or become a pain in the rear by going back to see a doctor you saw just a few days ago...........HATE THIS, HATE THIS, HATE THIS.............
Last edited by Pandora99; 02-27-2010 01:03 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) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Saw this in an article in the Washington Post and immediately remembered the same thing happening to me: [quote]as she ticks off a few of the things she's had to deal with: those cloying people who never tire of leaning in close and whispering How ARE you doing? in a manner that is the exclusive province of those who have never suffered grief[/quote]. It was an into to an article about [quote]the past two years, Ann Norton has lost -- in no particular order -- her husband, her father, her dog, her breasts and, very nearly, her theater company[/quote] Finally, this seemed applicable to many of us OCF members also [quote]Norton, the 56-year-old executive director of the Washington Stage Guild, knows that hers is a tale too melodramatic to ever actually play on the stage, however. Besides, a play involves conflict, "and there's really been no conflict in all this," she says. "There's just been dealing with this.[/quote]" 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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Donna, definately be a pain in the rear. No sense letting it bother you all that time. And I hate it when I get a clear PET but it is noted that there is "activity" in the lymph nodes.
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.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | How is it a clear PET with activity in the lymph nodes?
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
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 |
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.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Just reviewing belatedly the changes to my Federal Blue Cross/Blue Shield insurance and this one is a doozy: effective jan 1, 2010, all IMRT outpatient TX must receive PRIOR approval. The explanation is that BC/BS FEP needs to be sure that IMRT TX is medically necessary. I find it hard to believe that anyone is getting IMRT as a lark or as a cosmetic or dietary measure. Previously you never needed advance or prior approval, just a radiation oncologist order. One more insult and indignity for oral cancer patients and at a minimum, needless delay. Glad my IMRT and Cyberknife TX were in 2007 and 2009 before this policy change. 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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | hmmm....so if the insurance deems it medically unnecessary and won't pay, and the patient passes on...has the insurance company become a death panel?
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.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Is that JUST IMRT or is it all radiation therapy, XRT, tomo, etc.? Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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