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dcferree #152664 08-01-2012 11:16 AM
Joined: Jul 2012
Posts: 61
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Jul 2012
Posts: 61
Kelly,

That is fantastic news!! I wonder if they have an approach that would work for Base tounge and if I could send them a dvd of all my info. I contacted MD Anderson about just sending them a dvd but they required that I come there. I have a post at " Oral Cancer Recurrence > 1st recurrence and robotics" that tells more about my situation.

I am be prepaired for surgery (could be as early as next week)that would probably involve removing my entire tounge.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
dcferree #152680 08-01-2012 02:53 PM
Joined: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
Callie and nocam,

When I said U of Pitt would let you know if you qualify as a candidate for their study it was in reference to your current condition based on the files you send. If you are a candidate they will then need to see you for a final determination. I went through that and informed them on a Friday that I chose them to do my treatment; my first session was on Wednesday the following week.

Obviously I am a big proponent of second or third or fourth opinions. Then again my life was on the line. U of M told me I was out of options at 10:30 in the morning; I was scheduling my meeting with MDA by 1:30 the same day. It took me the rest of the week to schedule meetings with Pitt and Sloan and get my records overnighted to all three of them. I spent the next two weeks flying to Houston, Pittsburgh, New York and back to U of M for a consult with a doctor I trusted there. I had the money to do that at the time but I would have sold my car in a heartbeat if that�s what it took.

Don�t let one institution control the rest of your life (or tell you- you don�t have one). Get out there and get as many opinions as you can from top notch institutions.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #152783 08-03-2012 08:38 AM
Joined: Jul 2012
Posts: 61
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Jul 2012
Posts: 61
Hello Kelly and thanks for responding. Yesterday I spent most of the day reading through your +- 450 post. I am inspired by your knowledge, courage, determination, perserverance etc. as well as your ability to maintain a very positive attitude through it all. I hope that on this very day you are back to a new normal which is at least equivalent to the way you were before the reoccurance and progressively moving forward successfully. I am contacting my Doctors to see if my info can be sent to Univ. of Pittsburg for a determination as to whether they can do anything for me. You have surely introduced others to a possibility for treatment which they were unaware of until reading about your experience. I, as everyone would be, am devastated by the thought of losing my tongue, voice box and soon perhaps my life to this dreadful diease that came with so little warning.

How are you doing? Are you eating, working and generally enjoying life in a confortable way? I hope so.

I grew up in Belleville Michigan which is a small lake front town near Ypsilanti Michigan.

Take care!



2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
dcferree #152814 08-03-2012 02:22 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
I'm sorry and god bless! Callie but do push for the trial if you can get your husband's files looked at - hugs!

Last edited by Cheryld; 08-03-2012 02:26 PM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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