| | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Mary, We went through Mayo, MD Anderson & U of C, trying to decide on where to treat. We too had doctors tell us what the other doctors would tell us, and rarely did it match. I'd advise you to hear it from the source, particularly if that source is a CCC. Time is not your friend here, especially dealing with a reoccurrence. I would start the ball rolling as quickly as possible both at Memorial S-K & Hopkins. Ana
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | aleturn....OCF does not recommend specific doctors. Its always best to be treated at a major CCC. This has been scientifically proven to have the best patient survival rates. I posted the list of CCC's in my earlier post.
Mary, I hope you are making some progress with finding a top CCC that will be able to treat your husband.
ChristineSCC 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  | | | | | Joined: May 2013 Posts: 2 Member | | Member
Joined: May 2013 Posts: 2 | Thanks for explaining that, Christine. My apologies.
aleturn
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | aleturn,
Christine is right that OCF doesn't recommend specific doctors publically, but many members will share that information with you via a "personal message" which is under the "My Stuff" tab. In fact, that is how I got the name of the doctor I see at Hopkins!
I just tried to send you a PM, but you have that option turned off.
Last edited by Susan2992; 05-20-2013 07:44 PM. Reason: add comment
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Mary,
I sought my 2nd opinion and had my treatment done at Johns Hopkins They are the absolute best I've ever experienced. I called and was able to set up an appointment and 2nd opinion in less than two weeks.
#3 Nationally for cancer, #1 for H&N cancer....nuff said!
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | OK--on the trail to Hopkins. Just spoke to scheduling nurse and sent her some basic stats and reports.
"T", you must be just starting to feel a bit better again, if your experience parallels my husband's at all. He wrapped up right before Christmas. About mid-January, he was getting some strength back. Good luck and thank you to all the people who have answered my questions.
Mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
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