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

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.

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.

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.

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.

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

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.

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.

Thanks for all the responses! Will take all into consideration.
Will call doc on Mon and report progress-or lack thereof!