| | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Some top cancer centers may choose who they want to treat, just like this national chain brand cancer center does, that has great marketing, but may not take a chance to lower their succes rates with risky patients, and know of a few people that were turned down, including myself, one at the "almost top" cancer cancer in the U.S, who didn't even want to consult me with, wasting my time, money, under the pretense they would. As mentioned, a doctor that may not treat one, may be treated by another, and may come down to their experience not just by their location, and I'm not brand loyal, like they aren't. Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Oh, Katie - I've been sitting here wanting to say some very strong expletives to kick cancer's butt! I'm so sorry to hear of all you have been through! I see hope in the comments above. And there IS hope.You have so much to live for - Please don't give up, keep fighting! I'm sending prayers and positive vibes for you and your family.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | I've been praying for you katie.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Oct 2012 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2012 Posts: 33 | Thanks, everyone. We saw the medical oncologist at MSKCC today and he recommends I start Erbitux next Tuesday, followed by Cisplatin and Taxotere on Friday. I meet with the radiation oncologist tomorrow and we'll see if radiation is an option yet. The idea is to shrink the tumor to a point and then start me on a promising clinical trial drug. I barely slept last night and was pretty out of it during the meeting but this is the gist of what was discussed. I have to say that we were all pleased with this information. We weren't even sure that chemo would help me at this point. Nothing is written in stone, but we have to keep trying. As a friend said, the previous battle was lost but the war is not over. I also got an Rx for the fentanyl patch which I have on now. I was told it would take up to 12 hours to kick in. I'm looking forward to waking up in a lot less pain. Fingers crossed. Thank you all so much for your suggestions. It's been so wonderful reading all of your stories and getting your support. I'm so glad I could participate in last Saturday's walk. Let's make oral cancer history!
10/2/12 Surgery Dx Stage II SCC RLT
11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa
11/22/12 Hospitalized for infection incision at neck
12/5/13 PET scan tumor at BOT
12/26/12-2/27/13 RT and Cisplatin
4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU
7/19/13 Pet Scan possible recurrence
8/23/13 2nd op at MSKCC, CT Scan
8/31/13 MRI. Both show sizeable mass
9/11/13 CT-guided needle BX + SCC
10/1/13 Erbitux, Cisplatin and Taxotere
2/14/14 Passed away
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Encouraging news. 
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Awesome.... Hugs and prayers to you - hoping very much the drugs will make you pain free and the chemo does what it's designed to do.
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
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | So pleased treatment is starting again.
Any mention of surgery once the tumour has been shrunk?
I hope by now the Fentanyl patch has kicked in and you are pain free and have had a good nights sleep.
Yes definitely. Let's make oral cancer history.
Take care Katie.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Katie, so glad you have this option for treatment, and I hope the patch brings you relief from pain. Stay positive, you are a fighter!
M
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Katie, I'm glad to hear the options. I was trying to find the right words for encouragement, when I first read your post, and I came up with nothing but platitudes, which didn't seem right. I've been thinking of you though, and I'm glad there's a plan in place.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | Katie,
Have you spoken to Drs. Harrison or Hu at Beth Israel? They are doing radioactive implants. Hoping for some good news for you. I know them very well and can run this by them if you'd like.
All the best,
Rob
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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