| Joined: Apr 2003 Posts: 122 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2003 Posts: 122 | Hi, guys! Gordon here with a not-so-good update. Saw my oncologist week before last and he said the current chemo ( Erbitux/alimpta) was not working at all and he suggested stopping treatment completely. I feel that, while the treatment wasn't completely stopping the growth of my tumor, it was slowing it down to an extent that I could "live" with. (good one, huh?) I agreed that he could "do what he needs to do" just out of shock. I'm unfamiliar with how to go about getting the all-important "second opinion" and when I called his office they basically tuned me out as someone who didn't want treatment from this doctor and "best of luck!" I HAVE actually been quite lucky for the majority of this hayride-working on my eleventh year now, and for the most part, have had no intense pain/discomfort to complain about...UNTIL NOW! I'm assuming that it's phychological, but now that I'm NOT doing ANY treatment, it has begun to hurt like the DEVIL! It has spread to my left clavicle, and I feel that it's starting to spread to the right, all the while the main neck tumor is raising its' ugly head in a MOST UNCOMFORTABLE way! I won't be able to read responses before I go back to see him this afternoon (my computer at home has DIED!), but any responses will be truly appreciated. What can I ask for from here? What other treatments are available besides Erbitux? I assume the process of getting a second opinion is no more complicated than contacting another oncologist, right? Anyway, I've really missed posting here and gotten a LOT of strength and support from you fine folks over the years! KEEP IT UP!! My best to you all! Gordon
SCC right tonsil Dx 14 Feb 03 No surg till Apr 03 Lip resection Sep 05 "frankenface" Recurr Apr 10 2/3 tongue removed Jun 10 SPEECH/SWALLOW/DROOL challenges FUN! Dec 10 Tumor @ nodes/larynx/cart artery growing Erbitux Mar 11 Hyoid bone regrows!? recur Dec 12 begin taxo chemo 10yrs-still kickin!
| | | | 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 | I'm very sorry to hear Gordon. Some doctors, hospitals willl drop you like a dime , so don't feel bad looking elsewhere. As far as a 2nd opinion, I just called who I wanted to see, and made an appointment, had most of my records anyway. I have Medicare now, but several years ago, Aetna through my employer, but I didn't need approval to go to see a specialist or get other opinions then or now. I'm not sure of your insurance, how it works, but I would think you're in a position for many opinions?
Maybe come to NYC, stay at Hope Lodge, it's free, and have consultstions with doctors here. NYC has the most top doctors, and hospitals than anywhere else in the world,and can list them, doctors too, especially for head and neck cancer or go to U.S. Buisness Reports Best Hospitals, which lists some.
I hope this is of some help.
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: 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 | Im so sorry to hear this, Gordon! Please try to go to another CCC to at least hear what options they suggest.
Keep posting! We are great at giving members support when they need it.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi Gordon,
Sorry to hear your latest news. Seek out as many opinions as you need. As evidenced by Christine and Paul, no need to ever give up! The pain may not be the cancer and you should get that checked out. Best wishes to you.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Hi Gordon I second what Paul has said... Look up the best of the best and go see them  hugs and I'm not going to say sorry because I am hoping there is still someone out there who will help you.
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Hi Gordon,
Thanks for dropping in. Sorry to hear about the treatments no longer helping.
Call your insurance folks to find out what your options are for getting approval for other options.
If a listed CCC is not an option, try to at least get an appointment with a different oncologist associated with a different hospital.
Good luck and best wishes, Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | National OC Advocate/Speaker Contributing Member (25+ posts) Joined: Jun 2004 Posts: 30 | NYC is a great option for a second opinion. A second opinion is always highly encouraged. I'd recommend Dr. Mark Urken or Dr Jacobson, Beth Israel, (Union Sq 14th st). Put yourself first and get a second opinion. | | | | 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 | I second Dr Mark Urken and Dr Adam Jacobson at Beth Israel, and Radiation Oncologist Dr. Louis B. Harrison, who is a Head and Neck Cancer expert.
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: Apr 2003 Posts: 122 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2003 Posts: 122 | Thanks for all the responses! Will take all into consideration. Will call doc on Mon and report progress-or lack thereof!
Last edited by gpk101; 11-23-2013 03:08 PM.
SCC right tonsil Dx 14 Feb 03 No surg till Apr 03 Lip resection Sep 05 "frankenface" Recurr Apr 10 2/3 tongue removed Jun 10 SPEECH/SWALLOW/DROOL challenges FUN! Dec 10 Tumor @ nodes/larynx/cart artery growing Erbitux Mar 11 Hyoid bone regrows!? recur Dec 12 begin taxo chemo 10yrs-still kickin!
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