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#21936 01-11-2007 01:45 PM
Joined: Jul 2005
Posts: 624
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2005
Posts: 624
When I went to a head/neck cancer conference last spring all the doctors emphasized:

"A neck swelling or mass should be considered cancer unless proven otherwise!"

All said they were all hearing far too many stories of misdiagnoses, trivializing the problem etc. etc. by GPs -- it seems as if many people have the same experience as above.

My husband went to Johns Hopkins for treatment (#1 otolaryngology dept. in country) , second opinion at Sloan-Kettering (on treatment, not diagnosis) -- had 33x tomoTherapy radiation, 7x carboplatin, amifostine all the way through (ugh!). He also had a complete clinical response and is doing great 16 months out. No surgery other than tonsillectomy which was when his cancer was diagnosed. His cancer was human papilloma virus-16 (HPV) positive, which many tonsillar/base of tongue cancers are (esp. in non-smokers).

(He is now in a clinical trial for a new therapeutic (curative) HPV vaccine at Hopkins, maybe in years to come it will be the cutting edge treatment but still years away, even if the initial trials are successful).

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#21937 01-13-2007 04:17 AM
Joined: Jan 2007
Posts: 22
D C S Offline OP
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Joined: Jan 2007
Posts: 22
Thank all of you for your replies. We spent the week traveling to get various opinions. By the time night came I was too exhausted to get on email. We really like all the Drs at MD. Dr Weber, Dr Rosenthal(raidaology) and are flying back on Monday to meet Dr Kei for chemo. At this poit they are planing a pre chemo therapy and then radiation with IMRT. Their approach is toatlly multi displinary with everyone having conferences and having him see all types of doctors and dentists. We are hoping that the chemo can be administered here in Miami with Dr Kei's supervision (any comments)? We feel most comfortable with the IMRT being done by an expert at MD and plan the 6 weeks in Houston. We went to their adjacent hotel the Rotary House and it seemed nice. Met several people that had rave reviews of the treatment, doctors, and the support of the entire staff. Anyone have any comments on housing in Houston, and chemo at home? Thank you all. I know I will be here a great deal.


social drinker, smoked one cigar a week last three years.
#21938 01-13-2007 07:36 AM
Joined: Apr 2005
Posts: 2,676
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Hi, DCS. Sounds like y'all are on the right track. I just wanted to let you know that while John's Surgeon [Oncologist] is 150 mi. away, we have been able to do chemo at a hospital only 50 miles away. If you ask your MDA team to research a chemo Doc in Miami, they should be happy to do it. There is alot to be said for being at home, in your own bed, when you don't feel well. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#21939 01-14-2007 04:47 PM
Joined: May 2006
Posts: 720
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"Above & Beyond" Member (500+ posts)
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D C S --

Just FYI, a friend who is being treated at MD Anderson for breast cancer is having her chemo done at a hospital near her home in the Midwest (using the prescribed drugs/dosages from Anderson). She will then return to Houston for further treatment. So it can be done, and she's getting along fine.

All the best,
Leslie


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.
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