#74084 05-07-2008 08:00 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | The May 12 issue of The New Yorker features a profile of Chicago celebrity chef Grant Achatz that explores the sense of taste, and how it works, in the context of his treatment for Stage IV tongue cancer. -- Leslie
Last edited by Leslie B; 05-07-2008 08:08 AM.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | A rather lengthy article but found it very interesting. Thanks 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
| | | | Joined: Sep 2007 Posts: 79 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Sep 2007 Posts: 79 | I hope that many people will learn about OC from this article ...
* Root for Joe * Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
| | | | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | I read the article, even though it was long. What was interesting to me was how long he had this! It was going on for years, but neither his drs, dentists, or he pushed for an explanation... Scary stuff, when you think about how much better it might have been had this been identified early on...
Last edited by Me2; 05-08-2008 05:38 PM.
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | I get the New Yorker but have been so buried in end of the semester work that I just now read the article (and even then I really only skimmed parts of it). A very well done article that was educational about the sense of taste as well as oral cancer as well as telling a story that is all to typical about how it wasn't diagnosed soon enough (and in his case he had a bizarre negative biopsy to falsely reassure him as well). They did mention the connection between oral cancer and tobacco/alcohol and I'm very glad that got in there as well.
I think it will educate a lot of people about tongue cancer who might never have heard of it before.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | Joined: Aug 2007 Posts: 32 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Aug 2007 Posts: 32 | Interesting article. I had basically the same treatment, but with a Stage III tumor. I'm 16 months out of treatment and so far so good.
My taste experience was much different. I lost all taste of sweet during radiation, but the salty taste stayed with me the whole time. And sour and spicy hot are still a bit strong to me. Most of my taste is back, but not in the same balance, so I really have to think about what I'm going to eat now.
It's interesting how little they know about the sense of taste. The oncologist's primary focus was to get rid of the cancer and just warned me of the permanent side effects. Maybe more research will be done in this area.
Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | My daughter cut out the article and mailed it to me.
Ron, my experience is more like yours than the chef. Salt last and first, with sweet still lagging. BTW, for me anything with salt in it, like a soup, was extremely distasteful because it felt like someone had poured cups, not pinches.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Just an update on the chef. Don't you just love how quick the press is to declare him "cancer free". I've had an MRI, a CAT scan and a PET scan and my doctors will only go as far as "no clinical evidence fo disease" while the reviewing radiologists insist on disclaimers: ",,,although metastatic disase cannot be totally excluded". But good for him. Nice to see positive press and acknowledgment of the challenge forum members face.
Chicago man named nation's top chef
NEW YORK -- A Chicago chef known for his ethereal cooking -- as well as the tongue cancer that nearly ended his life -- was named the nation's top chef Sunday by the James Beard Foundation. The award went to Grant Achatz, who in July was diagnosed with Stage 4 tongue cancer, underwent aggressive treatment to save his life and sense of taste, and by December was cancer-free. 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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 |
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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